pensive woman

What it Really Means to Have Endometriosis

Girl in endometriosis pain

Endometriosis by definition is a disease process whereby tissue somewhat like the endometrium (the lining of the uterus) exists outside the uterus. This “rogue” endometrial-like tissue most commonly involves the peritoneum, a thin layer of tissue that lines the pelvic structures, the bowel, the bladder and the ovaries. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.

In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.


In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis.
Is your pelvic pain caused by endometriosis?

Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.

Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.

A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.
Learn how to end this suffering.

The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.

As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.

Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.

Woman in hospital with endometriosis

Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.

The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.

READ MORE
Learn More About Endometriosis
Endometriosis Symptoms
Endometriosis Treatment Options

Comments 145

  1. Amanda

    Hey ladies!,
    I’ve been trying to find a support group to join but there aren’t any close to me so I’m hoping this will help. I’m 22 years old turning 23 in a month. I’ve been dealing with this disease for about 3 years. I just recently found out the cause after going from dr to dr for 2 years and deciding that I wanted an exploratory laparoscopy. During this surgery the dr diagnosed me with endometriosis. I thought that after having the surgery I would be on the road back to a normal life but 3 months after the surgery my pain returned. I’ve been in and out of the hospital for 3 years because of this pain and no one seems to understand how debilitating this disease is. I can’t go to work on a regular basis, and I love my job. I can’t plan anything in advanced because I have no idea if I will be in pain or not. My social life has turned from very active to almost non existent. I haven’t been in a serious relationship for 3 years because guys seemed turned off by the whole thing. I’ve become depressed and have a breakdown at least once a day. My dr. has come up with a plan of action but this plan is a slow process and will take months to finally see results but until then I’m suffering both physically and emotionally. I just wish there was more of a support system and that people would understand. Any advice on what I can do in the meantime to help with my emotional state? Thanks!

    1. nene

      i was diagnosed at 23 yes i would love to do a support group. nobody knows what its like its terrible its put a hold on my life for the last 4 years

    2. Jenny

      I am suffering with this disease also. I am in the same situation but im married and have three beautiful children. I started exercises in the mornings helps alot. Eating a diet. Praying to the lord and asking for help. He has got me through my hard days. I pray for every woman who has this disease to be strong your not alone it is hard. Have supporters and loved ones. Dont smoke cigarettes it makes it worse. I was a former smoker and am at my 9 weeks mark. Feels great. Depression is gone. You can get through it. God will heal! God bless you.

    3. Launa

      Amanda there are some good support groups on Facebook. Endometriosis and me is a good one:) hope to see you there. As far as help for emotional state I’m working on that myself. I’m going to try relaxing more maybe some yoga but talking to other women who also have it helps:)

  2. Snow

    I’m home from a 5 hour ER visit for endo pain. After telling the DR that I have four fibroids, and three ovarian cysts, that a laparoscopic surgery performed last month to cutout and burn some away wasn’t so successful because the endo spread to cover both ovaries, to attach itself to the bladder, the intestines and the appendix, he told me I’m simply constipated and about to start my cycle. He then prescribed anxiety medicine and sent me home! How is that right? How is endo which has twisted and tipped my uterus related to constipation and anxiety?

    I am just now learning about what my experiences over the last 3 years truly meant. I have endo pain 24/7!

    This disease is incredibly life changing and I’m struggling with how to move forward and not lose my quality of life. It saddens me that the medical community under treats, misdiagnosis this mentally and physically disease.

    I hope you all stay strong and find support.

  3. Ashley

    Hi ladies!
    Its so crazy to see how many of us are going thru the same things. I have had this pain, this endometriosis since I was 16yrs old, it has gotten worse over the years and no doctor could ever tell me what was wrong. At first when the pain started I would go to the emergency room a lot thinking I had bladder infections uti’s or something but every time they would say nothing was wrong and would tell me to take pain meds. They worked for a while (like hours) but then it would come right back. I was so scared because I had no idea what was wrong or what was going on. I am now 28 years old and have finally found a doctor that really looked into what was wrong, why I was in so much pain. We tried the surgery, he went in and cut out some scar tissue, but I was/am still suffering, it sucks. I have lost jobs because I couldn’t make it into work, I have had to miss out on things with my family and friends because I couldn’t get out of bed. Recently I was on a cycle that last two months! Everyday, it was awful. I went back to my doc and told him what was going on. He put me on these shots called Lupron, I had to take them one shot a month for 6months. He said it was kind of like temporary menopause. I didn’t have a cycle the whole time I took them. The pain was gone, didn’t feel it at all, it was so nice. But the last one was in January and now I feel the pain again. He told me after the shots I would have to get on some kind of birth control so we tried the marina but due to my body I couldn’t do that form of it so I am now scheduling an appointment to get the one that goes into your arm. I have two children so I was thinking maybe doing the hysterectomy, but I am not married so one day i want to be able to give my husband a baby if he wants one but don’t want to keep having this pain for some man that may never come…. I am glad you ladies have told your stories because its a little comforting to know its not just me. I still have so many questions about endo that are unanswered. this pain has to stop. We as women go thru a lot all ready this should not be just another thing we have to deal with. I would say we should start a support group but if your in pain all you want to do is be in bed. its just not fair….. anyway its so nice to know I am not alone.

  4. Julia

    I’m from Russia. I have endometriosis stage 4. After the laparoscopy the pain intensified and spread throughout the body. Doctors say treat hormonal drugs, but they don’t help. Is it true that no one can cure it?I can’t work with such pain and continued fever. Please, give an advice how to reduce this pain.

    1. SAMANTHA KINDRID

      Please look up ‘Nancy’s Nook Endometriosis discussion and education’ on facebook. It has literally changed my life!!! There is wonderful information and support from nurses and physicians who have dedicated their lives to researching and helping woman with endometriosis.

  5. Pingback: The Endo Profiles: Cate – memyself&endo

  6. Sumaira

    Hi,
    I am quite disappointed reading about all the women suffering from this disease. Its a pity how their physicians were not really able to offer much help to most of them. I am a 43 yrs old woman suffering from endometriosis for more than 25 yrs. Had a surgery back in 98 to remove a cyst from my left ovary which quickly came back within a couple of years. I have had cysts in my both ovaries and fibroids in my uterus. I have been managing my endo pain with Brufin. that s the only thing works for my pain.
    Now, I am when I was about to treat my fibroids which are causing very heavy bleeding, I was told by the doctor that I should first worry about my endometriosis because it could become cancer. I was quite shocked at this as in the past 25 yrs I had seen at least 20 doctors for infertility or endometriosis and not even one of them had ever said anything about it could becoming a cancer. And now after this ob/gyn telling me this when I checked the net, it seems its filled with this kind of information that endometriosis could become cancer.
    Now I am so nervous that when I am operated for it they might find malignancy there, although my c125 and other blood tests n ultra sound results are negative for that. What is your opinion about it?
    Am I really at a high risk for ovarian or other cancers?

    I live in Pakistan.

    Sumaira

    1. R

      Hi Sumaira. Im not sure if youre still following this thread. But if you are, please do get in touch. Im in Pakistan too and struggling to find someone who can help me with this.

  7. Lori

    I am a woman in her 50’s and I have had endometriosis for over 20 years. After seeing many doctors and being told to take medication, I opted to go the natural approach. In my earlier years, I saw an herbalist and was treated with acupuncture for years which helped quite a bit. I also changed my diet which included removing diary and caffeine products which also seemed to help. I was pain free for almost 10 years.

    I am no doctor but doing the above helped me and maybe it can help someone else. Recently, the pain has returned and I’m going to begin acupuncture sessions again. . Good luck to everyone as I feel your pain

  8. Tanisha

    Hi I feel all you guys pain I’ve had endo for a few years now and the pain is so bad I almost rather died. I came on this site to see if anyone was going thru what i was going thru. God bless all of you this disease is very serious and painful!

    1. RLW

      I feel your pain literally. Dying seems better than constant pain. Mine is constant and moves all over my abs around my back and pelvic. Had a lot of tests and other procedures done before getting surgery today and being told I had it. No body parts removed. Not sure how bad it was because doctor had to leave before I woke. I hope this does the trick and I’m not back to square one with undiagnosed pain.

      1. anna

        I had surgery to remove mine a couple years ago, the became crippling. The pain cam back 6 months ago and slowly but surely I’m back now in crippled pain. It came back… I pray your doc got all of yours.

    2. Kat

      I am, extreamr pain for Days its just ….has gotten worse after surgery that. Exaustedand tired causing my happiness to fade. I want to be a happy person so i just keep telling nyself it will be better one day

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  10. joha

    Can A Strong Core Reduce… Even Eliminate Your Joint Pain?
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    Why?
    If your core is weak, your joints compensate by bearing weight that your muscles can’t. Then target one muscle in particular and all the other weak muscles compensate, stressing your joints even more.
    Sooner, rather than later, that stress leads to joint pain in a vicious, downward spiral.
    What you probably haven’t heard is how a strong core can protect your joints, even end joint pain at the source.
    Because your core is a system of 29 pairs of muscles.
    But until now, this knowledge has been the exclusive professional secret of the very best sports doctors and physical therapists working for professional sports teams.
    Most of us just don’t have access to doctors and physical therapists who know how to teach you to engage, activate and above all, balance your core muscles.
    Quickly, without expensive equipment, complicated protocols, or spending several hours a day in physical therapy.
    Until now, thanks to former NBA pro and chronic joint pain relief expert Jonathan Bender. Who has a gift for making the complicated. Simple and easy.
    If you don’t want to suffer from joint pain any longer… or you want to escape it altogether, click to read “5 Ways Your Core Protects Your Joints.”
    It’s already improving my life. I think it can definetely do the same for you. It gives smile on your face.. after using this…
    It is very useful to relief from pain.. feel better… It relieves your pain with smile…definetely..
    Everyone always think about to maintain good health,, bcoz better health gives new inspiration to everyone to work…

  11. Shawnee

    I too have had at least a dozen emergency room visits because of horrible excruciating abdominal pain. Recently to be told that I have cysts on my ovaries but never was I told that I had an option to have them removed. Tomorrow is my first diagnostic laparoscopy. this article is the first that I have found to be true and explaining how much we go through on a day-to-day basis. Hopefully tomorrow goes well and they are able to finally diagnosed me 100% with endometriosis. My biggest fear is becoming infertile I am a 26 year old female who wants nothing more than to have a child. I hope this article helps other women and some of the comments give advice so that us as a whole can keep Trekking.

    1. Marina

      Good lucky in your surgery, I was diagnosed with endometrisosis when I was 16, and I had my first surgery at the age of 22. The pain was ok to deal with, but after 3 years the pain came back making crazy. The pain was all over in my legs, back, arms, pelvis and all this symptoms that I was pregnant like nauseous and more. I went for a 2 surgery and the doctor told me that they could not remove all the endometriosis, because it was too much. Now I have been trying many things like eating healthy and Organic. I started hot yoga and it helps me to manage the pain a lot. Now I am 29 and decided to that I want a baby. I hope I can get pregnant anytime soon. If you are diagnose with endo don’t way too much to try to have a baby. My prayers are with you.

  12. RIN

    When I was highschool I had the worse menstrual pain and everyone my family and friends and even doctors told me that it was normal. I had to go to the emergency twice because of the excruciating pain that last for several hrs because normal panadol won’t work on me anymore. When my menstration came, it usually last for 3 days of continuous pain . I have to leave school then leave work because of the pain. The doctors have to inject a strong pain reliever for the pain to actually go away. Everyone says I’m over reacting and my own sister told me that I have low tolerance towards pain. My friends could not understand my pain that I stop eating sour foods that could trigger the pain.
    As I am turning 35 now, I began to have severe pms. Headaches , abdominal cramps , backpain , severe tirdness. It starts with one week of pain then it became two weeks of pain. Now I have pelvis pain everyday.

    I went to 4 different doctors. First one put me on birthcontrol but still the pain is there so I went to another one. 2nd one told me I avoid coffe and chocolates and gave me a strong pain reliever so that I don’t have to go to the emergency room if panadol stops working. Third one told me that I might have polycystic ovary and put me on metformin . Fourth one was the one who actually told me that I have endometriosis. A disease I never herd of. After ultrasound , it was confirmed that my pain is actually legit and not something everyone thinks I over-react from. I was put on Visanne but my pain is still here. The annoying thing is that the pain is here 24/7 . It is not excruciating pain but I feel the pressure on my left and right ovary and back pain.

  13. Lisa

    I’m 16 and have just been diagnosed and I didn’t really know much about it but this has helped me so much! Thank you!

  14. Alexis

    Hay I am 16 and in high school as a junior when school starts again, I live with my grandparents and my mom. I was diagnosed with endo when I was 15, I spend so much time in bed unable to do anything but cry and hold on to my heating pad. My mom and grandparents thought I was faking all the pain I was in, it took almost two years for a doctor I was sent to decided that I was in to much pain for just cysts that I was having and when he heard my mom and nana both had endo he threw his hands in the air and said “you could of mentioned that sooner” so he scheduled my for a laparoscopic surgery the Thursday after the next. And after the surgery I was diagnosed with endo, my doctor said I had about 40% -50% of my uterus was covered. It took about 2 weeks before I could go back to school as partial days and it took about a month and a half before I could ride my horse, I wanted to cry because I love riding. And I still have days where I have to stay home from school, miss riding lessons, and even not even go out and feed my horse.

  15. Liz

    Hi everyone. I’m 24 years old and have had endometriosis since I was about 11 years old, I was daigknlsed last year and had laproscopic surgery and it went away for a couple of months but not its back. the way my symptoms happen is very interesting, for example my endometriosis pain only lasts for one day and it’s only for 2 hours max and it’s always the first day of my period (I guess I’m lucky considering some people have it for days). And this pain only occurs if I get my period in the morning. If I I get it at night or mid day I have very very minimal and tolerable cramps. But if I wake up from it, it’s HELL!!! I can’t move, I get the chills and then followed by sweat, I’m nauseous and constipated. But since I’m on an empty stomach I can’t vomit, so I gag myself and that gagging feeling somehow relieves the pain but only for a couple of seconds, and I keep doing that until it completely goes away. And this is the only thing that helps me, no medication, not even surgery helped. But it’s ridiculous I’m damaging my throat by gagging myself like this and the pain is SOO awful, I’m sure you ladies understand. I also find it interesting that it has this routine of only morning periods. By the way I have always had irregular periods my whole life, never have I had my period on the same day as the month before.

  16. Amanda

    I have stage iv endo, had a laparoscopy in 2009 to remove endo, did 4 cycles of IVF to have have my twins, now in 2016 I went to have a hysterectomy, via da Vinci lap but surgery became diagnostic only because I have too many adhesions. Uterus, overies, urethra, bowels, intestines are all stuck together. Endo on my liver and diaphragm, and I have thoracic endometriosis. I was told to do Lupron, high dose once every three months for a year, then bcp or mirena, and the gyn can’t even discuss surgery yet since it’s too risky. Would need a specialist to sew up the bowels, oncological gynecologist, and regular gynecologist all present to attempt the surgery, and even then it may not be worthwhile since the scar tissue can cause further damage. Am currently seeing a cardiologist for the chest pain but i believe it is all to do with the endo and not heart disease, but given the higher risk of heart disease with endo, my gynac thought it would be a good idea. I was told I am a rare case, but seems like there’s just no winning with endo. Anyone else dealt with thoracic endo? Any advice or second opinion?

    1. Jenny

      Lupron is used once a month for 6 months. I find it strange that your doctor what suggest 1x every 3 months. It’s used to put your body into a perceived menopause. Because the endometriosis feeds from the estrogen produced by your ovaries, it shrivels up and dies. Sounds like you either need to clarify this with your doctor or find a new doctor.

  17. Jess

    Hey, I’m 16 as of now and I’m struggling with a severe pain in my pelvic area. It almost feels like it’s not in my abdominal but more like it’s deep rooted and the bones are shifting.
    I get sharp, quick, pains like I’m being shot.
    I have a strong tolerance for pain due to the fact I was diagnosed with arthritis and I thought this was normal.
    But around my menstrual cycle, anytime I use the restroom, stay sitting for too long, the pain gets so much worse, and I OCCASIONALLY feel it in class when I get out of those horrible chairs, and I have to not look so weird when I get up and I’m in severe pain..

    I’ve never left school because of it, but I thought these were normal pains, but I looked it up anyhow and I found this?

    I’m super afraid and I’m going to talk to my mother about it,
    but can anyone help me through the fact I have to see a gynecologist?

    I’m terrified of possibly having this or even not getting and answer and be turned away?
    What if it’s something really bad?
    I don’t want to be infertile?
    I found out about this and started to cry while feeling a small sharp pain.

    Somethings so wrong
    …..

  18. Sara

    Hi,
    I had an early miscarriage in March 2015. I have been in pain since. I kept going back to the doctors to be told it wasn’t gyno related and did god knows how many blood tests and about seven ultrasounds.
    The pain was 24/7 and got severely worse with any exercise (I LOVE exercise!). I would describe it to the doctors as ‘an angry tennis ball where my left ovary should be’… exercise turned it into a grapefruit.
    No, no, no. It’s your kidney’s, it’s this, it’s that. Surprise: all perfect.
    I was finally sent to a gyno after another miscarriage (we live in remote bush and only have one gyno visit every three weeks) and he said I needed a lapop. Finally someone taking me seriously!
    I was under for two hours and when I came around the gyno said ‘we found endometriosis, but it’s not enough to be causing you your problems. Next time you’re in pain, try some buscopan.’ He patted me on the knee and left.
    I went to a follow-up the next week with my GP, she asked if he had told me where the endo was. He hadn’t. It was at my left ovary.
    I gave them permission pre-surgery to remove one side of my reproductive bits if necessary; I have a spare set.
    I have a follow-up with the gyno in one-week and I am angry. I am so angry at being treated like an idiot even though it turned out I was 100% right the whole time and the doctors were wrong. I’ve been so angry but only been able to cry in my impotence to do anything.

    This article describe endometriosis perfectly. I am chronically in pain and chronically fatigued. I can no longer fully function looking after my family, our animals, and working full-time too. I want my life and my body back.

  19. Shay

    Hi everyone, I’m Shay (well that’s not my real name I don’t want to give it.) In June of 2015 I had a very painful period. It was so painful I had to rely on aspirin and a heating pad. I couldn’t wait for it to stop…but there was one problem..it didn’t. My period continued for a whole other week and I was terrified considering that my period had always been normal up until this point. It felt very nice when it finally went away after 2 weeks. But I felt devastated a week later when it came back. It was horrible and I would find myself crying and holding back tears for absolutely no reason at all. Went to the gyno and found out I had a cyst on my right ovary and they decided to watch it. My periods continued to be horrible until I got to the point where I became used to it and just put up with it because I had to. I continued checking on the cyst, and it went from 3 cm to 7-8 cm in just a couple months. That’s when they decided to do a laparoscopy to see what was wrong. It turned out to be endometriosis. Surgeon scraped it all off and luckily I got to keep my ovary. Right now, I’m on birth control. My first period after the surgery was ok, but this last one was nuts. I’m still getting used to it hopefully it will get better as time goes on. Very interesting stories, I like this page and I’m glad that I have a chance to read stories of others who have gone through something similar.

  20. Destyni

    Hello ladies.

    I was diagnosed with ovarian cysts when I was just 13. I’ve always had extremely heavy ( sometimes when I get ready to shower from the time it takes me to undress and get in, there’s blood all over the floor . Just like a murder scene. ) The pain is extreme every month. I would miss school when I was younger, and I miss work. I was put on light duty and my hours at work have been cut upon my request. I have been having allot more pain these last few months. I had a huge cyst on my left ovary that was so big they were going to operate, but it burst before they could. I went to the hospital in an ambulance when it happened. I was in so much pain I thought I was going to pass out. When I got there they gave me morphine and told me it probably burst but didn’t check to make sure. Ever since then, the pain still remains in the left and right side. It goes into my back and down into my knees. I was put on depo to stop my period. It didn’t work. I ended up bleeding for two weeks with horrible cramps. Then, I passed a huge “blood clot” it looked and felt like actual tissue. Like a small organ or something. It was the size of my palm. I went back to the hospital they ran tests on it, the test say that it was “just blood ” I have pictures of this thing, there is no way it’s just a blood clot. I also bloat so bad every day it looks like Im five months pregnant. It’s very uncomfortable. Now, after three months of waiting my gynecologist appointment is on may fourth. I can barely even have sex. The pain is almost always there. Even as we speak. My period is extremly late. Two negitive pregnancy tests, no period and still extreme pain and cramping. I’m always tired and nauseous. My boyfriend that I live with, keeps telling me to stop being a baby. It’s all just stressing me out so much. I just want this all to end. Heres to hoping for some type of diagnosis soon so I can be treated.

    Good luck to all of you strong women out there!

  21. Leslie

    Hi. I’m 27 years old. I have 2 children and ever since i had my son in 2013, on the day before my period I have lots of pressure in my cervical/pelvic area. The first day of my period I have bad pains and it lasts for about the first 2-3 days then starts to ease up. Well this time on the first day of my period I was doubled over, crying, in SEVERE pain. Tons of pressure in my cervical/pelvic area and my bottom. It hurts to sit or try to use the bathroom. I am nauseated for days. Vomiting if i move too much. The only way I can describe the pain and pressure is when I was at the end of my pregnancies and the pressure from my baby pressing down on my cervix. But the pain is so so so so much worse. I’m going to my obgyn this week and I’ve looked up all my symptoms and Endo is the number 1 diagnosis on multiple sites.
    Any ideas i could possibly have endo?

    1. Karla M iabnez-Hernandez

      Hi, was it endo?

      I have had endo stage 4 for many years, but right now it’s really bad. And also my bottom hurts alot, I mean alot.

  22. Tara

    I am going in on June 14 for a Cystoscopy, to remove polyps, and to check if i have endomitriosis. I’m pretty sure I do because of my symptoms and so does my gyno. I’m nervous a bit. I just can’t wait to NOT be tired and in pain anymore! I feel my family and friends don’t fully understand what I’ve been going threw. Thank you for this!!

  23. Kelly Page

    This is a breath of fresh air!!
    I see similar sentences.. ” am I crazy, am I nuts”? I went into A and E after battling for several months with server pain. Couldn’t get relief from sitting, Standing or walking it off. So, went to A and E…hubby couldn’t watch me struggle any more. I am some what stubborn. The A and E doctor said possible IBS and cognative. ie, in your head!! Right so I am crazy. I kept running my business, dealing with staff, being a mother and step mother, a wife, friend and all the normal roles us women play. I changed my diet, I tried to spread my workload out. Took regular hourly walks, sometimes even TRIED a slow jog. PAIN lots of PAIN. Sod it I will go and see a councillor talk about issues… not that I have many. Great kids with normal worries, Hubby who is supportive. Good circle of friends and family. Business ticking over nicely. Still I went. After 3 meetings I began to feel low…hang on aren’t I supposed to feel lighter?? Then the pain started to worsen. Hubby called GP and I was seen within the hour… Constipation. Given strong laxatives, told to change my diet and eat everything I was eating. So explained. The GP rushed a Sigmoidoscopy. Appointment arrived and I went. The sigmoidoscopy was stopped due to causing more pain. Told “we need to put you under we are refering you to a colonoscopyst/Bowel surgeon. Met the bowel surgeon who started asking about my periods and female family history. Explained painful cycles all the time, gone from flooding to vile discharge that wont go away and always constipated with a dash of diarrhoea before period was due, but pain always there, just varies in strength with cycle stage… “Endometriosis”…sorry what? I had never heard of it. So went to see the female GP at our surgery who fits coils and knows all about lady health issues. Again explained…”Endometriosis”, again this word. I’m sending you to see my husband in Winchester who specialises in Endometriosis. (Head in a spin now). So, meet with him and froze. I had it in my head that I was crazy, even my councillor said this could be pyschosomatic, (I told the councillor what was going on).
    My consultant then explained Endo to me in detail. He told me that it can affect the bowels, back, bladder and many other things. Suspected something was pushing against my bowel rather than in my bowel. Booked me in for laparoscopy… 2 weeks from consultation. The night before my operation the pain had me on my hands and knees rocking. I refused to cry as in a matter of hours I was to have the op. I arrived and met with my consultant/surgeon one of the same person. He then prepared me in case they didn’t find any Endo, but if that was the case, he had other options to get me pain free… Okay you seem a fair kind man, I will go with what he siad.
    Off I went for my op, I went down at 7.45am, I came round at 11.45am wow did I come round… ah yes Operation thats why I am in agony. I woke at around 11am, but the pain med’s needed controlling the pain wasn’t under control. It wasn’t until the recovery nurse explained that they had been trying different pain relief to get me stable, think I frightened them a little.
    I ate and drank, went to the loo and was walking pain free. I was as high as a kite, not pain free.
    My husband and I saw my surgeon and this is what he said…
    “this isn’t the worst case of Endo we have seen…It’s the most server case we’ve seen” Sorry what? Case? Server? Then my husband translated.
    “Darling they found Endo everywhere!! It was really deep, they had to work on you for a long time. Cutting, burning and some other thing I can’t remember. They are using you as a case study!! Are you happy with that”… er YES!!
    “Also, it was all over your rectum internally (ie in the abdominal cavity behind my womb) they also found 2 fibroids with stalks on the back of your womb and fibroids in your womb”. Hubby’s face said it all. Poor thing had to repeat it again 2 days later once all drugs were out of my system.
    I was let home and given constipation makers…opium!! within 3 days I was readmitted with a compacted bowel. Laxatives both ends and controlled morphine. I was let out after 2 days with good bowel movement.
    This was 4 weeks ago. I’m still in pain, but my consultant wants me in, this coming Thursday as he’s not happy. I avoid opium at all costs, sometimes I will take over the counter ibuprofen with codine as its a small amount, but I am on stool softeners 3 x a day and senna. Sleeping tablets as can not sleep, even though I’m shattered. I’m still going for walks and resting, then moving again. I take my time with everything and have sold my business. I am lucky to have the consultant I have, but I wanted to write because I have seen many uneducated medical professionals, been told I was crazy, pushed myself beyond my own limits and never given in. I know me, I know my strengths and weakness. I also know I was uneducated and I am still learning about this debilitating disease. My body has changed, my skin and hair have changed. Yet my determination is firmer than ever. Keep researching and believing in you. We are NOT machines we are biological, we are emotional and we are all worthy of living a healthy pain free life. Post on social media, spread awareness, talk to people and educate them. One Day at One time, or even One hour at one time. I wish all who read this love and light and most of all I hope you find strength to put you first. My husband put me first, now I am learning to do just that. My journey isn’t over, but I know I am finally on the right path. Look up specialist in your area. I was lucky to have a GP who’s husband is a specialist and works in a specialist unit. They are out there. This site is even specialist. best of luck to all x

  24. Mandi

    I was just diagnosed with endo about three weeks ago after years of horrid cramps and ongoing PMS. The worst part is I just experienced breakthrough bleeding and the pain makes my skin feel like I have the flu. I don’t want to be touched and just want to cry because I hate my body for doing this to me. I’m bloating in all these places and I feel like I’ll never get better. I’ve had my period since I was 11 so it’s been almost 22 years of this agony. When does the pain stop? Will my body adjust to the meds and feel better? I can’t live this way forever and I just hope there’s light at the end of the tunnel!

  25. Sanela

    Hi inwas diagnosed with endometriosis at the age of 18. I have always had severe period pain and would sometimes vomit acid. When i went to the doctors they would tell me it’s normal to have period pain. O would sleep for 3 days straight and not go to school eat or drink anything. I had no energy in me. I am now 21 and i have had 3 laparoscopic surgies in less then a year. I had pain during intercourse and my marriage is very rocky at the moment because of all the endometriosis. Im still living in pain even though im drinking contriseptive pills. We have been trying to have kids for 4 years and never worked. I wish everyone the best and i wish no one had to go through this.

  26. Emma

    I have been in excruciating pain (on and off) since I was 15 I am now 26 the pain has been gradually getting worse as I have got older. I’ve been in and out of gynecologist’s, hospitals, GP surgerys I have had a numerous amount of scans (inside and outside), pregnancy tests all negative and even a smear and all of them came back clear. Back in december 2014 I thought I finally thought that I would have a diagnosis the hospital booked me in to have a laparoscopy, after the surgery they told me that this was failed and the only thing they can advise me was to take painkillers (but none of them seem to help me cope with the pain) and continue to keep taking my pill daily to try and stop my periods (which hasn’t worked) since December 2014 after the failed surgery the pain seemed to have subsided untill the pain worsened recently this month I decided I wanted to change doctors as I thought that I would be able to get them to investigate this matter further since 07th March I have been trying to book an appointment with them to no avail. The pain has been persistantg since the 07th March so yesterday after work I decided to go into the walk in centre after taking to the doctor who could only provide me with pain medication decided to perscribe me with 50mg of tramadol which I have just started taking today they said to continue taking this untill I can arrange to see my doctor, this pain has been going on to long now and I just want the pain to stop. Any advise that you would be able to give me at all? Much appreciated.

  27. Bonnie

    Hi my name is Bonnie and i haave had endometriosis ever since i started my cycle in sixth grade. I am 32 now and have unbelievable pain with every period. I have had laparoscopic surgery and was told i have endometriosis about 8 years ago. They could not do lazer removal because the endometriosis was on my intestines. I did the hormone therapy and it worked but it also had negative side effects which caused me to stop treatment. Since then my endometriosis has come back with a vengeance and im in constant nauseating pain every time i have my cycle. Also my cycles have decided to stop showing up when they should which has happened in the past. I need to see a doctor about this but i cannot afford to and i mean really cannot afford it. Can anyone help? Thanks for your time and consideration.

  28. Jes

    Hi. I am Jes. I have been suffering with horrific pain since I was 14. When I was 24 I was rushed to the hospital for unbearable abdominal pain. Which turned into a ruptured cyst on my ovary. My doctor gladly took me into surgery to find out my entire abdomen area was engulfed in scar tissue. I say it looks like the Michelin man. But you get the point. I have had 4 surgeries since. One was a microscopic lazer surgery where they ended up nicking my bladder. Yay me. But that’s a back story. I ended up on strong hormone medication which I stopped a year ago to try and conceive. No luck. I am getting married in 12 days and I have been bed ridden in pain. Swollen and looking as if I am pregnant. Can’t hold it together to move from one room to the next. Yes I know stress can lead to inflammation which irritates the endometriosis. But what do I do from here. I don’t even know if I will make it through my own wedding. Help

  29. Jessica

    Can someone PLEASE do a study relating “evening primrose oil” and endo! I have had endo since middle school, the pain was so severe I would scream in pain and often throw up every month. I tried everything, even t3s AF naproxen didn’t stop the pain. A co-worker 6 months ago recommended evening primrose oil (after I missed a lot of work from endo).. Since I started taking the oil I have had NO SYMPTOMS, NO PAIN. All from an over the counter plant oil in pill form. Please do a study on this! It may help other women like me!! It seriously changed my life, job, and relationships. Thanks.

    1. WoodyBB

      Thanks for that info. I had a hysterectomy a year ago at 42 after painful periods all of my life. Despite textbook symptoms and telling them that my sister had been diagnosed with endo, they failed to diagnose it. During hysterectomy they found that one ovary was completely encased in endometriosis and that I had a 4cm fibroid and adenomyosis. A month after the op I had period pains. When I spoke to a nurse she told me that a hysterectomy wouldn’t cure endometriosis. I think I knew it, but couldn’t face the awful realisation that I had needlessly had a major operation. After 10 months the pain was becoming unbearable until just after Christmas, I started losing blood. This was really scary as it shouldn’t be possible and I was shocked that I still hadn’t healed properly. After the bleed I felt much better, with more energy and no pain. After 4 weeks the pain returned. Some days are awful, but the nights are unbearable even tramadol and codeine don’t touch it. I feel so upset as I feel that most of this is in my head. I wouldn’t wish this on my worst enemy, but it has helped to read your accounts and know that I am not alone and not being a wimp or going mad. This condition is very real. Thanks for sharing.

    2. Kristen

      I too suffered from the onset of my period for decades! Stage 4 , infertility, a dozen surgeries including bowel resectioning, various narcotics and multiple meds to induce menopause with no relief. FINALLY I swore off conventional medicine and their apparent glee to make me a slave to pharmaceutical companies and not cure me, but cut me open any time my insurance would pay. I went to an alternative doctor, was given 2 supplements, including Chaste and Squavine and I am nearly symptom free. I would cry over the years ruined and robbed by this disease if I wasn’t just so happy to have it finally managed. One of my daughters is showing signs of endo. She will have an entirely different experience than I did, so I’m thankful I learned the hard way so she will be spared!

    3. Ronan McCall

      How much did you take? My girlfriend has been crippled 24.7 for almost a year now, cant work and is bleeding a huge amount. So worried about her, thank you

    4. Gill nelson

      Hi ya Iam suffer too I have had enough of been in totally pain 24/7 it feels like it taking over my life at the min it’s cause problems in my relentionship I have had it for three years too long feel like Iam losing the plot at times just wish they could find a cure for it

  30. Melissa

    I am a Nurse that is 40 years old. Diagnosed with Endo 10 years ago, had a TBA that took away my periods. In last 2 years life has changed and in last 6 months Drastically changed. Can’t have alcohol, caffeine, or sexual intercourse. My nagging everyday lower back pain is immense!! I am scheduled for a Hyster on 3/18, teriffied my pain will still be there! Thanks for this article & may responses, I now know I am not NUTS!!

    1. Jackie

      Did the surgery help? Im in the same boat. I have stage 4 endo & need hyst & likely bowel recision. I’m 37, but I’ve needed this since I was in my mid 20’s. Obviously I’m terrified & afraid the pain will still be there.

    2. Lesley Trott

      Hi. I’d love to hear how the hysto went. I’m going for a ultrasound tomorrow and I have a feeling I’m only at the beginning of tests. I’m finished birthing children, other health concerns. If it’s what it takes I’m seriously considering it.

  31. Kyra

    I’m 17, I haven’t officially been diagnosed with endomitriosis but I’m pretty sure I have it. I constantly have pelvic pain almost like menstral cramps but worse, it doesn’t go away and is very painful. I often feel bloated, I’m so weak and tired all the time. I had to drop out of public school because i took so many days off and am now home schooled. My periods are aweful, and the pain is even worse on my period. No one really seems to understand what I mean when i say I’m in pain, its not like having a cold where you could take a sick day off and be better soon because it’s constant, some days are better then others but I’m always in pain sometimes it hurts too much just to move. I feel like I’m complaining too much. It hurts to do basic things that I used to be able to do which makes me feel lazy or useless even though I’m trying the best I can. My family’s beginning to get frustrated with me, my boyfriend gets upset because sex is often painful and I’m just not up for it. I’ve been to a couple of doctors who all say they cant find anything wrong with me. This so so frustrating I feel like I’m going crazy because the doctors haven’t found anything wrong with me but I know this isn’t normal. i just want it to stop or at least know whats happening to me. I’m sorry this was so long I’m just wondering if anyone else is experiencing what I’m going through.
    -Kyra

    1. Tiffany

      I am sorry that you have to go through this seemingly alone, just know that you are not alone in this. Do not give up hope that the right doctor will listen and help to get you answers to your questions and validate what you have been feeling and know to be true. I know this is frustrating for a young person to deal with and often leads you to feel isolated. Try to remain positive and proactive in your approach. If you feel like you are complaining too much, you probably aren’t. It took many years to finally have my doctor properly hear me and order additional diagnostic testing and ultimately schedule my laparoscopy which confirmed my endometriosis. I blame myself for not speaking up for and not insisting that more be done sooner. I suffered in silence alot. My family was aware that I had difficult amd heavy periods. My dad is an OB/Gyn yet he did not realize the extent of my suffering until he looked over the reports and saw how invasive the disease had become. The doctor on my case referred to my endo as a ,”peek and shriek,” meaning it was so severe and difficult to work on. He did his best to remove most of the lesions, but had to excise a portion of my right ovary and I was told that my fallopian tubes were obstructed. I was placed on a year long course of lupron. I felt devastated at the time. So many things ran through my mind. The happy outcome for me was the birth of my now 18 month old son, who I was not sure I would ever have. Through the anguish I have experienced happiness and hope realized in the birth of my little boy. I experienced a relatively long period of relief with the lupron treatments. I will say that as more time passes by, I do experience more pain associated with periods and extreme fatigue from time to time. There are side effects that come with the treatment like potential bone density loss, hot flashes & irritability, but it is worthwhile knowing about another option. Other people swear by changes in diet, being diabetic I already have a heavily restricted diet. I don’t if it is an option for you or if you are even open to the idea, but I found massage therapy and acupuncture to be helpful in managing the pain in addition to breathing exercises. I know physical activity can be hard to negotiate depending on the extent and location of your pain, but consider exercises that encourage streching like pilates or yoga. I have also done ballet workouts that were less intense in addition to walking and biking. I have found that spending time in the sauna and steam room to help with relaxation for both mind and body. I hope this is helpful and that you find a good doctor who will care for you and assign the proper treatment.

    2. Sierra

      Hey kyra. I’m sixteen, and I’m kind of going through the same thing. Minus the boyfriend part and sexual intercourse I’m also experiencing pain just like this. It’s all of a sudden and most of the time I try and sleep it off. I’ve cried so many times over it, thinking I have gone crazy. My stomach gets so bloated. I’ve been in the ER for the pain, and I looked like a fool when they didn’t find anything. The only thing they told me was that my stomach was inflamed- they told me not to even worry about it though, that is was normal for peridods. There’s been times when I’ve walked down my highschool hallways and just stopped and leaned against the wall, out of breath with how intense it is. The pain just comes and goes for me. I’ll go from balling my eyes out, wanting to kill my uterus, to wondering what we’ll have for dinner. My mother is starting to get annoyed- she says I have missed to many days, and I’m beginning to think she doesn’t believe me. She tells me that I have to ‘ suck it up ‘ and that she has had worse pain then me. I try to explain to her that it’s different. That it’s a monthly thing, that it ruins my sports activities, that I can’t have a solid conversation with someone without wanting to leave and curl up in a ball. (But I can’t even do that, because its fucking painful) She just doesn’t get it and it’s starting to ruin our relationship. I’m pretty sure my female friends think I’m crazy aswell. I usually get this pain in my anus- just a stabbing type of feeling. They have no clue what i mean and i look like an idiot. I’m happy I found this page though, because just like you I haven’t been diagnosed with it but I’m pretty sure I have it. I just want help. If i need to get my ovaries removed I would, or if I need to jump out of a plane to stop experiencing this pain- I would. I’m pretty sure everyone on this page would.

    3. Becky R

      Kyra,
      Please make an appointment with an OBGYN, when you call to make a new patient appointment, ask to see a doctor that is experienced in unknown severe pelvic pain. It is possible for you to have Endo at a young age, it is also possible to have treatment without a hysterectomy. There are many options, but to be officially diagnosed, you need surgery. I highly recommend it, as they can possibly remove some/most of it, to help with the pain. GL!

    4. Christine

      Hi kyra i experienced the same thing as you except my periods stopped in 7th grade n my doc said i may have endo. Then when i turned 20 they started again sometimes i miss a few but always in constant pain some days better than others. If i was to share my story its EXACTLY as you wrote. Im 28 now and 2 weeks before my 25 bday i went completely bald within days docs had no idea why thankfully it all grew back but it was a hormone issue due to the endo. And i lost alot of weight woth all the same daily pain some days better than others until two years ago right before i started my period i woke up feeling cramps that just kept getting worse and worse to the point i thought there was something seriously wrong not just cramps. Was literally SCREAMING IN PAIN grabbing ky stomach thorwing up uncontrollably nothing stopped it unless i went to the er. The docs had no idea ran every test imagined i dont know how many months that this happened. Now then it only lasted until my period had started. It was like that up until this february. And honestly for a few months it didnt happen but was VERY VERY rare. I tried acupuncture didnt help nothing did trust me tried everything!!! Well its may now and i havent had a period since feb. And in march it happened for 2 days and didnt even get a period just a little spot bleeding which i never have gotten. And then no excrusiating pain until this month. I thought the pain i had before was dying pain no joke literally until last wednesday it happened again and the pain the vomiting the screaming the fevers the whole 9 did not stop for 7 days. I never got a period or spot bleeding and was in the er 2 times thinking tjat there was no waaay it could be the endo being this long….but it was. I don’t mean to alarm you but if you think its what you have gp to a gyno and tell them to test you. I just got diagnosed and i am still waitong to see what my daily and mo thly options are. And praying that i wont have another bad time for awhile. Good luck

    5. Erin

      You poor thing. You are far too young to be this miserable. My pain started with my first period. I too felt crazy and had to skip many functions because I was in pain, bloated, etc. I just had my second surgery to remove lesions. However, I’m 34 and doctors really were no help until I couldn’t conceive. My best advice is to continue to advocate for yourself. There are hormone therapies that will work for most people. Keeping up with taking ibuprofen and heat packs help too. Hang in there, you’re bound to find someone who will listen. Once you are diagnosed, your family can be educated. From experience, once they do a little reading, they will have some more compassion for you. Hang in there.

    6. Yvonne Rice

      I to have the exact problem. I’m 56 years old and was diagnosis with this painful disease. I’m do to have an biopsy soon. I have a strong family history of cancer and two years ago I had a double lumpectomy which came out find but have pre-cancer cells. My doctor wants to see if this disease is pre-cancer cells also. If so she said that I should have a hysterectomy.

    7. Ashley

      I know exactly how you feel. I’ve had endometriosis symptoms since I was 16 years old. ( I am now 23) I took birth control pills for the first 2-3 years but had to stop because there was too high of a risk of blood clots. I am unable to keep a job because of the number of days I miss due to pain. My doctor is not willing to preform a laparascopy on me because she feels it’s too great a risk and there really is no cure. I am stuck to suffer, and occasionally Naproxen (an anti-inflammatory) helps, but it only disrupts my stomach ulcer. So I can’t even take that as often as I’d like. Heating pads (on high heat) help with the menstrual cramps, but not the bouts of inflammation or excrutiating ovulation pain. I wish I could say that things will get better, but I honestly don’t know that they will. At this point in my life, the symptoms seem to be getting worse. I can only be here as someone who knows what you’re going through. Stay strong. xx

    8. D

      22 and you took the words right out my mind. Found out today that I may need another laporoscopy (my second in the past 6 months) so they can take a biopsy they hadn’t done on the first one. Or a shot to stop my ovarian and uterine functions basically temporary premature menopause to see if my body reacts. If it does then I have it and also if the biopsies show microscopic endometrium lining them I have it. Or I did take Naproxen twice a day til menopause in like 30 years.. Crazy huh. Good luck to you.

      -Darlena

    9. Debbie

      Hi, I’ve only just read your blog and can totally relate to it. Sorry you’re having such a lousy time but there is hope. My daughter who is 16 is now under a consultant gynaecologist after suffering severe back pain, cramps and heavy bleeding which had caused her to miss a week plus off of school each month, she would literally end up on the floor in the school office due to pain. My daughter is now on the combined pill which she takes for 3 months at a time and also takes tamoxefenac (to reduce the blood flow) when it’s her period. My daughter has just managed to have her first ever period without missing school – she did have some pain but was over the moon to feel normal again. I also have deep infiltrating endometriosis and I’m due to have a hysterectomy in 3 weeks as I suffer terribly with fatigue and severe back pain. Please don’t give up and ask to see a consultant that specialises in endometriosis. Good luck xx

    10. Christina

      Show your parents this site and insist on seeing a doctor who specializes in endometriosis. If your symptoms are caused by endometriosis and are already so severe, it can very quickly affect your fertility and ability to have children in the future. So sorry to hear that you’re going through this and I pray you get the help and attention you need. XO

    11. Crystal L Mcgregor

      I’ve had it since I was 15 they diagnose through laperoscopy.. at 21 I had my left ovary removed in a week I go in to be scraped in hopes of removing some of the disease that is there and avoid a full hyst.. I am 26 now and my previous doc wanted to do the full hyst. But I refuse! I want one more baby before my body is 100% ruined!! I am one of the lucky few who have conceived but I’d give anything for 1 more child! Please get to a gyno who is willing to look so you can get treatment right away!!

    12. Julia

      Kyra, I didn’t notice any responses to you… and I know this is kind of an old post but I wanted to reach out to you anyway. I have been dealing with Endometriosis since since I was 13-14, basically shortly after my period started. My periods were heavy and lasted longer than they should. I always had lower back pain too.

      I went on BC pills at 15 and that helped regulate but the pain remained.

      The only way a doctor can for sure diagnose endo is with a laparascopy. It’s an outpatient surgery where they go in with a scope to look around, and they remove endo tissue if they find any.

      I have found the only med that helps during my period is Pamprin Max, seriously.. the only one. Make sure you are getting your vitamins in, that will help with energy a bit.

      Keep up with the doctors. It took until I was 27 to get a doctor to take me seriously and do a laparascopy.

    13. Amanda Buller

      I went through almost the exact same thing, have you mentioned to you dr that that is what you think you have, when i was 17 i went through a few drs. Because they didnt understand one told me that “sometimes women just get pain” it made me feel horrible and i started to question if it was all in my head. Finally i found the right dr whos taking it serious and at 21 now i have tried a few different medications with no sucess, the next step is surgery.

    14. Breanne

      Don’t give up girl! I know exactly how frustrating it can be – and when you are young it is hard to get people to pay attention to you. But you are exactly right – what you are going through IS NOT normal. I had pretty much the exact thing happen to me, and when I was diagnosed, it was hard for me to get proper treatment. Don’t accept what the doctors say, keep pushing! And be rude, and be persistant, and remember that there is another lady who has gone through the same thing. I have been through two surgeries, gone through 10+ birth control/hormone treatments, taken every pill in the book – and I am just turning 25 next month. I finally have found a wonderful doctor who is listening to me, we are finally making progress. So don’t give up and don’t be silent. It’s a common problem for women, and yet I had never heard of it until I was diagnosed. I’m rooting for you, stay positive! It does get better!

    15. Maggie

      Im going thru the same thing now.nobody understands,not my family and not my boyfriend.my boyfriend does not even try to.the fatigue is terrible..im now anemic from bleeding so much that is making the fatigue so much worse…its a neverending battle

    16. Charlotte

      Kya,
      Im 20 years old and had been suffering exactly as you described up until this year. I was getting letters due to my lack of school attendance, was constantly in the doctors from severe back and stomach pain and suffered from weight loss due to the frequent vomiting from being in so much pain. Often i would show symptoms of water infections but no infection was prevent and sex would occassionally be excruciating for me. The doctors told me i was perfectly healthy and according to tests I was, however after years (since 13) of going back to the hospital and doctors repeatedly. Having a cystoscopy, numerous blood tests,being misdiagnosed (IBS and interstitial cystitis) and medications i was referred to the hospital once more for a laproscopy which showed endometrial blisters where there shouldnt be.
      It is incredibly tiring and saddening to have to go through so much effort to get your diagnosis as I did mine, but I promise you if you push hard enough with your GP surgery they will follow it up until they find what is wrong. If you are almost certain it is endo I would ask for a laproscopy as they found my endo straight away from that after years of deliberating between doctors, nurses and surgeons.
      much love,
      charlotte

    17. June

      Get a laparoscopy done ASAP! Then the doctors will find what is going on inside you. Don’t take no for an answer. If one doc won’t help, find another. See a Gynocologist too…that a must. At least they will know what to do look for. Good luck, be strong and be persistent cuz it’s your body and you are in a prison because of it.

    18. Keri

      They really can’t diagnose endometreosis without doing a laparascopy. Ask your ob/gynecologist for a laparascopy to investigate possible endometriosis.

    19. Amanda

      Hang in there!!! Don’t give up on finding a diagnosis. I have been having similar problems, not constant pain but pretty close to it. Heavy bleeding during my cycle, clots and pain so bad it hurts to sit down. I was just referred to a gynecologist and was given pills that I just started taking. The only way to confirm endometriosis is through a small surgery. I also feel tired and weak and its very hard to take care of my two year old at certain times. It seemed to have started after I had him and my abdomen seems swollen on one side and its really painful to touch. Ive been for 2 pelvic and abdominal ultrasounds in the past year and they haven’t seen anything. I am convinced its endometriosis also, and yes i know what you mean about the sex issue, my husband is also growing impatient as i never feel like I can and it hurts more then feels good. I will be 30 in a month or so 🙁

    20. Mallary

      The only way they will know if u have it is to go in u’r lower abdominal with cam and look around! Hope u get the help u need god bless! I have endo and it sucks so I fill u

  32. Heather

    I was trying to get pregnant and finally did then miscarried. It’s been 3 months and I have had excruciating pain since usually when I get my period. Tried to get pregnant again in Jan and nothing. Went to the hospital a few weeks ago since the pain was so bad and doc told me uti. It’s usually only when I have my period and it’s so bad in my abdomen and my bottom :/ found out tonight it might be endometriosis and I’m heart broken. Will I ever get my baby???

    1. Erib

      My 3 year old daughter is proof it’s possible. I’m so sorry for your loss.
      I have severe endometriosis confirmed by two surgeries. We are lucky that medicine has come very far over the last two decades in regards to fertility. I conceived through ivf. There are many other methods as well. They can give you additional hormones to stave off miscarriage. You’ve probably figured some things out since Feb, just thought I’d respond. Good luck!

    2. MiraclesHappen

      I have sever symptoms of endomtriosis. Have had it for years. Had many miscarriages and a still birth with twins. I was very jealous of women that got pregnant. I tried to tell myself it will never happen for me, that I will never have a baby. Years later I met my husband and we have a healthy 19 month old now. She is my everything. My endomitriosis symptoms are 24/7. Im fatigue all the time, constipated for weeks, feels like when I d go its knives coming out, I have urinate constantly, headaches, moodiness so bad that I get frustrated bc it makes me mad at myself that I cant control it, sex has always hurt, my periods r horrible when I have them..they like to not come every month. I also have cysts burst. I feel sick to my stomach alot bc I am constipated all the time. I have allergies bc of endo. I dont think my family understands why Im always tired but if you dont have endo then you dont get it. For the ones that think they will never have a baby. I was told I could not get pregnant that I was all dried up. I have a beautiful girl sitting n my lap saying momma and hugging me right now. Miracles happen and my husband and I are huge believers in that bc the doctor still doesnt understand how I got pregnant. There was no drugs used to help me conceive either. Try to relax and believe one day it may happen…… 2016

    3. Sally

      Hi I don’t know if anyone has answered you yet and hopefully you have been told by now by a medical professional atleast. If endometriosis is the cause then yes you can still get pregnant. You will need a laproscopy to confirm its endometriosis and during this procedure depending on the severity of it they can remove it or burn it off. Once healed you should be able to get pregnant. I had endometriosis removed 2 years ago and have been told I can still get pregnant 🙂 hope this helps and hope the same goes for you. Best of luck !! Xx

    4. Heather

      My aunt was told she wouldn’t be able to have babies, and she kept going to different doctors until one finally helped her. She had gone through 3 miscarriages and almost gave up. But the doctor told her to keep trying and with medications and other treatments she finally got her 2 beautiful children. Even after the pregnancies she still had endo pains and finally decided to get a hysterectomy. But just keep looking for a good doctor who is dedicated to your cause, one that wants to help you, and it will happen.

    5. Zibusiso Mazibuko

      Hello Heather
      I was diagnosed with endometriosis when I was 20. I went through the operations and hormone treatments to try reduce the endo- no luck. But I never lost hope. At age 38 I got pregnant naturally.
      My advice is don’t focus on the baby. You may have one, you may not. But the baby does not define you as a person. Enjoy your relationship with your partner.
      Just as an add-on I have found that cutting sugar and eating very little meat and dairy products really reduces the pain significantly.

      Never lose hope.

    6. Angie

      I feel your pain. I was diagnosed with endo. Had surgery. Doc said my chances of having more kids was slim to none…that was 16 years ago. I had 2 kids before my diagnosis and now have a 14 and 10 year old.. I am going to send you an enormous amount of Love and good thoughts..may you be blessed with a precious one ♡♡♡♡

  33. vinolia

    Hi every one 2012 I got pregnant an but I had micarriage. Ever since then I don’t remember saying I’m perfectly fine some days a better than others . Some are worse to an extend that I don’t wanna wake up. I thought i practicaly tried every thing until i has your stories ladies. I hav seen a couple of doctors an all I get is it just a pelvic pain an all they give me pain killers ibuprofen an hyospasmol but still de pain won’t go away instead it gets worseech month especailly around my periods , I hav cried to a point that I would tell God I want to die

    1. ee

      So sorry to hear how much pain you are in vinolia.I also was at a point where I felt the pain was just so intence that I didn’t want to live anymore.But thankfull I cried out to Jesus and he lead me to being healed and healed me completely.It’s been over 2 years and I have 0 symptoms of endo as well as other incurable life threatning illnesses.Don’t give up there is hope I know other ladies with endo and adenomosis who have been healed and have been able to go on and have kids even though their chances of getting pregnant were considered laughable by doctors.

    2. Reina rosario

      So sorry sweetie I started having pains at 15 nd no Dr couldn’t tell me what it was I found a specialist whom suspected endo…problem was I needed surgery to confirm I did have four operations but notion lessens the pain it’s come to down to very strong painkillers nd now wit the dea laws what they’ve I can’t seem to get the script nd this tookbover NY life my marriage is gone I lost my only cold my home nd my job yet still no help it’s frustrating and no matter me except those who suffer from it understand I’m looking for another way to manage pain since the meds r not available any more.

  34. Kiara R

    Hi all, I am 43 was diagnosed with endometriosis last year in the US as had severe pain in the abdomen and lower back. The doctor then suggested that I shud be on birth control pills and skip periods for every 3 months and see after the 6th month how I feel. As there is no other medicine or surgery that can rule out endometriosis completely even if I do a surgery to get it out it will come back with a revenge.
    I did try the BCP for sometime and my pain had reduced considerably had severe bleeding but no pain.
    But once I stopped the pills my pain returned. Ialso had 2 cysts in my left ovary. Which keept disappearing and comeing back aft some time.
    I have done all test and the doctors are seriously not concerned when you tell them that you have a lot of pain that you cannot even get up and walk properly due to the pain.
    It took me almost a month to get my MRI appointment and the gyn would just not bother if you ask her what can be done. They just give a cold nod and say yes you will have to bear some pain.
    It is like living in hell with the constant pain and discomfort and no one can understand you my husband keeps telling me to go to the doctor but I meet with the same frustration when the gyn does not come to any conclusion and just keeps asking me to do test after test.

    I pray all you ladies get the strength to fight this disease and get your life back xxx

  35. Rebecca Levenseller

    Thank you. I am going through all of this right now. I am 20 and I am getting my right ovary removed because of endometriosis. It is so painful and all my doctors can do is give me painkillers and those don’t work and they are not healthy. I had to drop out of school because the pain was so much and I couldn’t sit in a classroom. If anyone has any tips to deal with pain please let me know.

  36. Amy

    I was officially diagnosed last in 2014 with deep infiltrating endometriosis, but I knew since my early 20s I knew that was it. I had such a hard time having doctors believe me and was even misdiagnosed saying I was just tensing my back and she was a endometriosis specialist!! Due to the severity of the pain I ended up becoming an addict to opiates for over 3 years. I finally had a doctor do a laparoscopy even though she said well I guess we can try it, but I’m sure you don’t have it and boy was she wrong. She said it was nothing like she’s ever seen. After that I was kept on pill anything and everything you can think of, but it was to the point even what they were giving me wasn’t enough. I had to go on the streets due to the excessive amounts of opiates I was taking. Finally November of 2014 I went into rehab and have been sober ever since. I still deal with horrible pain every month, but I do take toradol for it which helps extremely. I do take a lot of medication for other issues, but I’m taking each day one day at a time and keep on sticking to my sobriety. Girls we are strong and we can fight this and just know your not alone.

    1. Jen

      Hi Amy, I have severe endometrosis. I was having several abdominal pain in multiple areas. I was also experiencing constant uti like symptoms, with no actual uti. After lapo surgery it was discovered severe endometrosis had fused my left ovary and colon together and my bladder and uterus together.

      During surgery the fused organs were separated and endometrosis lesions removed. The uti like symptoms improved significantly. I no longer have the constant urge to urinate, bloatinglad or lower abdominal pain. The rest of abdominal pain has only increased.

      I have learned it takes a very skilled and knowledgeable dr. To remove and treat endometrosis. If you are not getting the treatment/care you need. Please find a new dr. This ishould a difficult disease and needs the best possible care.

    2. Colleen

      Hi, my story is very similar to yours…. I too turned to oppiates which that road is sooo tireing! Not too mention what it does to your health. Anyway sence I’m on month 11 of being sober… My good days should out wiegh my bad….recently I’ve had to switch primates cuz one told me it was in my now the next days it’s from the opiate use…and now I’m just sensitive too pain!!! Thankfully I have an amazing thyroid Dr and he found high rbc high wbc and high hemoglobin and hemocrit…. So I’m back to the ob gyn hopefully now I’ll have some answers!! I was diagnosed in Jr high with endo but between pregnancy and horomones must be I kept it in ✔…..now my hips and my back they just cripple me with pain!!

    3. ashton

      Ashton 25

      I have endo for past 6 years usually the pain has been mild i have done many treatments i had a miscarriage due to endo also had a daughter she is now 1 year and 6 months ever since i had c section the endo has been severe painful at times am not sure if possibly get up hopefully have a hysterectomy soon end the this pain here to those done this with smile everyday i salute used

  37. Hannah

    I have been poorly since last October with what started out as water infections leading to a kidney infection. Soon then I developed severe pelvic pain to the point I am crippling over in pain and couldn’t get out of bed. An ultra sound scan revealed I had a 5cm dermoid cyst on my ovary. I was then referred to a gynaecologist to go over my symptoms. While waiting for my appointment I had been in and out of a&e and became even worse with sever vomiting and fever.

    I eventually had an emergency laproscopy which to my surprise revealed no cyst at all on my ovary!? But a lot of fluid present – I was then told the cyst had burst and was also diagnosed with endometriosis & polycystic ovarys.

    I have also been struggling with urology problems and have had a cystoscopy which everything seemed to look normal. I am now awaiting results from a CT scan & an ultra sound on my bladder & kidneys.

    Could the endometriosis be linked to my kidney pain and bladder problems? I constantly feel like my bladder is full & have constant pressure. I am also feeling so exhausted with no energy at all.

    Is this all linked? Just wonder if anyone has suffered with the same symptoms? Sorry for the essay!

    1. Cmc

      You should really look into interstitial cystitis. Ic and Endometriosis occur so commonly together that they are referred to as the evil twins. Its certainly worth a mention, and if you can find a Urogynecologist, I would highly recommend.

    2. Jeanne

      Yes, I think it may be linked. I was diagnosed with endimetriois in my 29’s and am now 43. It wasnot as severe aafte surgery, being in constant birth control pills and having 4 children. Now, I am in a lot of pain. They are doing a laproscopic surgery on June 2 to see if it is the problem. I pray you find some answers and pain decreases. I also have bladder and bowel issues that I think are linked to endometriosis infiltration. I think the only way to find out is laproscopicallt. Best to you!

    3. Lisa

      I have suffered from the same symptoms I have endo, pcos and just found out I had a prolapse plus I have a cyst on my ovary which I found out today. I’m constantly exhausted and I hate it, I wake up feeling like I haven’t slept and that lasts all day.

  38. Kaitlin

    I’ve been sick a little over a year now and it seems like through the various tests over this period of time (Colonoscopy, Upper Endoscopy, Gastric Emptying Study Test, various X-Rays, and an exceedingly normal amount of CT Scans, along with routine urine and blood work) the more I complete, the more answers I have! I vaguely remember when it first began, over 2 years ago, it was all very mild and, from what I think I remember, it focused more on my back than my stomach. But for the past year, i’ve had, I assume, 20 if not more ER trips due to excruciating abdominal pain and an inability to stop myself from vomiting. I’ve been admitted a few times, but the routine is that they give me pain & nausea medication and stabilize me with liquids and other medications through an IV. The pain is so severe I can’t do anything besides sit in a (what my family calls it) “boiling hot” bath water, soaking in it, getting out into a robe so breathe from the heat for a few minutes, and getting back in. Its the only thing that can bring me just a pinch of comfort, but the heat makes me sweat so much that my body can’t help itself to chugging half a bottle of water or Gatorade knowing its going to come back up in a matter of minutes.
    Ive had two separate woman, one of which has a medical background and both of which have been treated for endometriosis, tell me that they are certain this is what I have! I have to get abdominal surgery for Internal Prolapse, but my doctors are saying this isn’t related to “whatever it is” I am experiencing that has gotten progressively worse in the past 6-9 months. They want to test me for Chrons disease with a pill endoscopy, but how can I convince them that its important enough they check for this? Of course there is much more to what I have written above, but as a 21 year old mother, I don’t have even know where to begin. I never expected to feel so ill, for so long, with so many unanswered questions and no diagnosis regardless of the multiple tests they’ve ran on me. Where do I start if this is what I could potentially have?

    1. Jeanne

      I am having surgery for prolaps as well and they are checking for endometriosis at same time. They may be able for you as well. I am sorry you are in so much pain. Me too, hit water helps, so does heating pads. Try constant birth control pills so you do not have a period for awhile. This will help tell you if it us endimetriisus, as the lining will not grow more when you do not cycle. You may still have pain due to the nature of the disease and extent. I was pain free for years after surgery and on birth control pills. Best of luck for you.I have had 4 children aafter diagnosed in my 20’s. Pain is back now at 43 and people don’t understand how bad it hurts, as bad as childbirth sometimes.

  39. Rina

    I just found out a couple months ago I had endometisisos. They put me back on the depo shot . well I can say it don’t help with the pain. It sucks. The Dr wants to talk about more options. I told her I will not do the lupon depo I really don’t know what to do. I don’t like being in pain. But am scared to ask the Dr for pain meds cause they think everyone one here is on drugs. I was seeing a pain Dr and he didn’t help me so I fired him.

  40. Cinthya

    THANK YOU, for REALLY understanding and putting it so clear in to words. But most of all for the respect of woman experiences and for honoring that.

  41. Brodie

    This article seriously sums up my life
    I’m 19 and have had endo for about 7 years but after being misdiagnosed several times it was only confirmed that I had it at the start of this year
    Every day is a constant struggle and no one seems to understand
    The fatigue is getting worse and worse to the point I can’t go to work because I physically can’t move
    It’s nice to see an article that actually understands
    Iv shared it with my friends and family and hopefully they will start to understand what it’s really like for me

  42. Katie

    I was diagnosed with endometriosis at age 18. I have had 2 laporoscopys removing the lesions by laser and went on to have 2 children. The pain returned and became more aggressive. My gynaecologist advised me to try the Mirena coil which I did – this didn’t work for me, I started getting pains over a 3 week period and severe back pains (was taken into hospital as they thought it may be my kidneys-I knew it wasn’t because the pain was cyclic with my period).
    As a process of elimination to find out what the back pains were I was advised again by my gynaecologist to have the Zoledex injection to induce menopause. Yes the pain subsided but I became so ill with severe migraines from the side effects, I only lasted 2 injections. The plan was to have another laparoscopy – the plan fell through as the surgeons advised there would be complications with the surgery (due to 2 previous laparoscopies I developed an umbilical hernia and now have mesh over my umbilicus).
    I was offered pain management and left to suffer. The pain is becoming worse, periods getting heavier, migraines returning and I have cyclic hip and back pain including sciatica.
    My children and partner are suffering too, I have days where I can’t put on a brave face and carry on and end up crying in agony. I feel as if no one understands what I have to deal with.
    My partner tells me I need to go to hospital but I know they won’t do anything. If I didn’t want another child I would opt for a full hysterectomy.
    It is such a debilitating disease that’s not acknowledged as much as it should.

    1. Sarah Smith

      Hi Katie,

      Your symptoms sound very similar to mine. I also seem to get cyclical back pain in the left side that travels up into my hip and down my leg. The pain builds before my period (I too was crying with it last week) and then as soon as I come on that pain dies down and is replaced with my “usual” cramping and burning womb/ovary pain. Once my period is over my back feels better but then the pain starts building and the cycle starts again. Sometimes this coincides with urine infections, random bleeding, weird electric shock feelings across my stomach, constipation, migraines…

      I’ve recently had a consultation and I’ve been booked in for a lap on 8th March. My consultant wants to rule out endo as he doesn’t think I have it (his main reason is that I don’t have pain during sex, but I’ve met a few endo sufferers who haven’t got this symptom either!), so I guess they won’t know until they go in.

      I got an initial diagnosis of endo when I was 19 but my doctor at the time didn’t want to operate on me so he put me on the pill, which I came off after 10 years because I hated it. I’m 33 now and perhaps I’ve put the lap off for too long! Very, very nervous about it but I suppose it’s the only way to know what’s going on.

      Hope things have improved for you over the last few months xxx

      1. Jenn

        Hi, could you email me. I seem to have a lot of left side ache too before and after my period. I’d love to talk to you. Sounds like our stories match pretty well.

      2. E. Mac

        That’s me each and every month… I was diagnosed after i had 2 cat scans and a biopsy of what the cat scan showed mystery lump/cyst type shape. My Dr’s have been fabulous so I guess I’m really lucky that way but there is no 100% treatment that works and pain relief only takes the edge off it… I have had 3 children so it hadn’t effected my fertility in fact I have been told that the c section I had with my last child was the start of it all but that’s not 100% certain but I hadn’t any problems at all until after my 3rd child born.

  43. Christy M

    Hi all! I was 15 when I was diagnosed with ovarian cysts. I had a laparoscopy done and the Dr told my mom it happened because I was fat. His exact words. Flash forward to 16, I had a grapefruit size cyst on my left ovary. I was in the hospital getting prepped for surgery when it burst. I was cut hip to hip. Now this Dr told my mom that if I had any more pain, it was all in my head. At 19 I had another laparoscopy. Still no relief from the pain. I got married at 22, for 7 years we tried to get pregnant. At 29 I had to have a total hysterectomy. Endometriosis had taken over everything. That was 14 years ago. I’m on hrt. The hot flashes are the worst. I still have cramping. I was in a deep depression until I reached 40. No mini me running around the house. I gained 75 lbs in those 14 years. This year is my year. I’m taking back my life. I’ve lost 45 lbs. Still a long way to go but I’ll get there. I’m seeing a gi Dr soon to see if that’s where the pain is coming from.
    Just thought I’d share a bit of my story.
    -Christy

  44. Liz G

    Hi there, During surgery, do doctors remove all or only some of the endometriosis. I hear that only a few doctors in the U.S. remove all of it (which is most effective).

    Thank you,
    Liz

    1. Margaret Sterner

      Hi Liz,
      Thank you for your question …
      Effective treatment is complete removal of all endometriosis implants via excision surgery.
      Removal of all of the disease is important, but method of removal is critical. Fulguration,
      Cauterization, or burning techniques do not result in complete removal of the disease.

  45. Sinenhlanhla

    Im 26 years from South Africa and have had painful and heavy periods ever since i started. 2 yearz ago i had so much pain that sometimes i cudnt move. Went to a Gynae who said i had ovarian cysts and would inject me everytym i went to him. What i noticed is that the pain would be back every month. I changed the doctor and this one first gave me Fermodene and it helped 4 abt 3 months. Ryt nw im on Visanne and stil feel the pain. Help plz!

  46. Suzette

    Hi I just want to thank you for the info , I was diagnosed with endo last year August and recently got some sad news that it is back again , and we are struggling to get pregnant. I hade all the procedures to remove it I also had a cyst removed. I’ve been on all kinds of treatments for the endo and for fertility and its very hard , almost like one just want to give up , but when I read all the stories I sometimes get so encourage to go on again, im only 30 this year and really want a baby before I have to go the route if having a hysterectomy cause that might be my last option. im going in soon again to remove some more endo ,unless we fall pregnant this month, we going under again . just wanted to share . Good luck to all the ladies going trough this its not easy.

  47. Jessica

    Thank you so much for this article. It really means the world to me right now. I’m 24 and ever since I was about 13 I’ve always struggled with heavy and very painful periods. When I was 17 I went to three different Gynos all who said I had no signs of endometriosis and sent me on my way saying here’s 800 mg ibprophen, it’s just cramps. From that day on I felt stupid like maybe I made up how bad and extreme my period was. And that I was being a baby and this was just a part of life. Every month it was painful and I would count the days till the next and just dread what was coming.

    Then back in December 6 months ago I was doubled over on my floor for 3 days extreme pain in my stomach, diarrhea first two days and throwing up that I stopped eating and drinking. The pain settled down and tried to go to the gym drank some water threw it back up and was doubled over again in so much pain. Went into er and 7 hours later after 5 doctors an obgyn discovered my ovary was covered in 5 endometrial cyst and swelled to the size of a coconut twisted in my intestine and blocked off my intestine. Had emergency surgery removed my right ovary. And Fallopian tube and scrapped off what they could of the scar tissue and endometriosis. The next day doctor said I was good to go and see me in a year. I was nervous but trusted him

    5 months after this surgery I was still a mess and periods were just as bad as always so I made another appointment with him to find out further things to help my pain . He suggested an iud I got a Pap smear before I could get the iud it came back abnormal so did a biopsy came back high squamous cells cin2, set up an appointment to get LEEP procedure and one week before that apointment same thing happened I was doubled over 2 am on the verge of passing out extreme pain and diarrhea and was taken into er. 5 hours later find out another emergency surgery is needed. In surgery he found and removed 6 in of my bowel that was closed off twisted and was completely covered in scar tissue and mass amount of endometriosis.

    This is my story so far I’m now finding a new Gyno who will hopefully listen and stop taking endometriosis so lightly. If there is anything I can tell whoever is reading this please don’t take your health lightly if your in pain , keep pushing and make it known and if your doctor brushes it off like it’s not a big deal please find a new doctor. Endometriosis is serious and not many people will ever understand what it’s really like. Just like this article says

    1. Margaret Sterner

      Thank you, Jessica, for sharing your story. The burden this disease places on women is heartbreaking.

    2. Angela

      Hello Jessica. Your symptoms sound a lot like mine. A couple years ago I had all the same stomach problems and had no clue I had endometriosis. I was rushed to the emergency room 3 different times and had every test possible performed and everything was normal. After my third colonoscopy, they removed what they thought was a polyp and ended up being endo inside my colon. I thought my period cramps were painful but all women experience them so I never complained. After being diagnosed, I started birth control pills but they didn’t help and I was still experiencing cramping and diarrhea all the time. About 9 months after, I had a fourth colonoscopy and laparoscopy. The colonoscopy came back normal with no endo this time. The laparoscopy came back with a small amount of endo they removed. After surgery, I went on the Lupron shots for a year. The lupron wasn’t bad for me. I had minimal pain, no periods and hardly any diarrhea flare ups. I did get some of the side effects; hot flashes, vaginal dryness and lower sex drive but it was worth it to have very little pain. After the year of lupron shots, I had the Mirena iud inserted. It was great for about 9 months and then I started to get excruciating pelvic and lower back pain, gained about 20lbs and have terrible mood swings. I can’t even exercise or have intercourse because it causes the pain to get worse. I’m thinking the iud might be the problem even though the doctor doesn’t think so. I have an appointment to get it removed so I’m keeping my fingers crossed. If that doesn’t help, my doctor wants to perform another laparoscopy which I’m trying to avoid. If you haven’t done so already, I’d think twice about the iud. Several people have said they’ve had the same side effects I did. Unfortunately, I do believe we have to stay on some kind of hormone therapy to keep this disease in check. I totally understand your pain and wish other people would also.

  48. Donna

    Hi i am 40 years of age and my periods are getting worse every month my legs ache i am such an nightmare to live with.. i know this myself, i feel sorry for my partner and kids that they have to put up with me like this, i suffer great pain every month and cry a lot i have been to the doctors and she said my progesterone levels were down and i was taking progesterne tablets but they made me violently sick and gave ne dioreah i just dont know what i can do now

  49. Lakkie

    Hi Everyone,
    Thanks for the article confirming that my tiredness isn’t just a mental thing. I am from South Africa. Reading all your comments makes me feel blessed to have the gynae I do. At 19, my GP referred me to my current gynae, who immediately recognised the symptoms. I had my first scrape and removal of cysts then. After 2 healthy babies(surprisingly!) I had a hysterectomy at 30, leaving my ovaries in place. I had 5 great, almost pain-free years. Then pain started creeping back. I was getting more and more fatigued. I blamed it on being overworked, getting divorced, having moved. Then recently, during intercourse, it felt like someone had punched me in the stomach, HARD. I consulted a new GP, but it was brushed off. So I went to my old (almost retired) GP. He sent me for a sonar, and the doc there referred me for a CT scan. All this proved the endo and cysts are back with a vengeance. I am 37. It feels like I cannot sleep enough, have constant back pain and pain in my side. Sex is painful. Thankfully, I have visited my same gynae of 18 years. I’ll be having laporoscopic removal of the cysts, the scarring, the endo, and an oopherectomy in 10 days. I am not too happy about losing my ovaries, but if the pain and tiredness will leave my body, I will be in a much better place. Thanks again for the to-the-point article- i’ll be sharing it with my partner so he can understand better what i’m going through xx

  50. D

    Hello.
    I really enjoy how this article is written. It feels as though while reading it, we’re connecting – as though it was a verbal conversation, rather than a website talking towards you.

    I’ve had every test done “under the moon” to figure out what my abdominal pain, which seems to be worse with dysmenorrhea, may be – excluding a laparoscopy which I’m on a waiting list for.

    I was told it could be IBS but I was never going to accept that & I know it’s more than that.

    SO, my questions are:
    – Can ovarian cysts disappear and come back as they wish with NO signs of them being there “in between” and what is the best way to find them?

    – Can endometriosis come and leave and leave no signs of it ever being there?

    Thank you so much and my apologies for the long message.
    Please email back as soon as possible.

  51. Moraima Montenegro

    I had my right ovary removed 4 years ago and a hysterectomy 3 years ago. At the beginning I felt great! I had energy! I was actually able to function all day without being tired and the pain went away. Today I get minimal pain, I believe its when I should be on my period but I have a few months feeling very tired and sluggish. I am unsure if I should blame it on the hormones or the endometriosis. Would you have any advice for me? I feel it is slowly taking over again. 🙁

  52. Kimberley

    For four years ive been suffering with tummy cramp and had lots of test and scans, the doctor told me it was actually IBS. Each period the pain would get worse but I just kept putting it off. Christmas 2014 I had pain in my back, tummy, groin and down my leg, I went to a walk in centre and they referred me for an ultrasound, they found I had 3 cyst 2 measuring 4cm and one measuring 7.5cm, since then k have been in and out of hospital several times and been for several tests, ive now been told I also have endomtriosis, it’s taking over my everyday life, im in hospital every other week in absolute agony, im in constant pain 24/7 and I feel as tho the hospital isn’t doing anything to rush the procedure up. I’m now waiting on an MRI to see how bad the endomtriosis is and what it’s effecting. Im taking lots of pain killers, tramadol, morphine patches, codeine etc.. Nothing helps ease the pain and I just don’t know what to do anymore, ive looked at going private but it’s going to cost thousands of pounds. any advice will be so grateful.

    1. Gemma lyte

      Im in the same boat i currently have pain in my tummy and im bloated and feel unwell… its awful.im.waitung surgery also:(

  53. Misty

    Hello, I have been sick for two years now and finally had surgery in March of this year for Endometriosis diagnosis and and ovarian cyst removal from my left ovary. The ob/gyn found and excised 3 spots of endo and lasered 3 that were in hard to reach places. He removed a large cyst from my left ovary and said I had 2 stalks growing on my fallopian tube which had cyst on them as well and he also removed them. I have such problems with my bladder and bowels and I still don’t know if the places he burned off were on my organs because he never would tell me. He performed a Cystoscopy which leads me to believe it was taken off my bladder. I have never recovered from the surgery to date! I was admitted to the hospital upon my post op check up because of all my pain. I had a catscan with contrast while in the hospital and before being discharged he told me that I had just let the pain get away from me? That’s all! Then the same restrictions as when I had the surgery, light activity and no heavy lifting! The pain has never left. I’m the same as before surgery but 10 times worse because now I think I have a pelvic prolaspe which landed me in the emergency room There I found out that I not only more than likely had a prolapse but I now have Colitis and my Pancreatic enzymes are extremely elevated. They did a Catscan and a Transvaginal Ultrasound , the ER dr said that the TV wand can push the prolapse back up but it can come back down. Is that true? I am now due to see a different gyno and I have to go to the gastroenterenologist . Could my Endo be back already? Plus my Uterus was enlarged. I know it’s alot, sorry I’m just so sick. I’ve lost 18 more pounds since surgery and I didn’t have a period in March, then a 2 day one in April then 3 days of breakthrough spotting the next week.

    1. Chaya Miri

      Oh can I so relate to you, Kimberley. The surgeon I saw eventually dismissed me and was disrespectful to me, because she didn’t know what to do. She performed surgery but didn’t remove anything, because she “couldn’t see anything.” That means she had no idea what to look for. After my last surgery in January, 2005, I lost twenty pounds possibly more. No doctor could figure out why. The pathology from this surgery finally revealed endometriosis on my appendiceal fat and a carcinoid cancer as well.

      I know I need another laparoscopy and excision but am terrified to go under the knife again. Also the majority of the endo surgeons where I live don’t accept insurance, and I cannot afford to pay out of pocket.

      Yes, your endo could definitely be back. It is a horrific disease. I only pray for a cure.

  54. Kim Scharfenberg

    I am just wondering. I had a hysterectomy about 15 years ago due to endometriosis. The Dr. left one of my ovaries. I had my gall bladder removed 2 years ago. I have been having severe pain under my sternum in the middle of my abdomen for months that has spread to the left side of my abdomen. I have had every test there is for the stomach, heart, and all other organs in my body but all have come back negative. I was wondering. Can endomotrios still be in my body? Where I hurt? Do you have any advice?

    1. Margaret Sterner

      Hi Kim, I am sorry you are having pelvic pain … many surgical techniques vary, so it is possible that endo was missed or perhaps burned instead of being excised. Perhaps you should see a specialist or consult with our office, as we do complimentary phone or internet consults for those interested. Margaret

      1. Stephanie Markland

        I’m 23 and was never fully diagnosed with endometriosis, was just told i have ovarian cysts. I’ve noticed more lately that I’m spending more time curled up in fetal position crying due to pain. How would you recommend going about getting it fully checked? I mean it’s getting so painful that it hurts my pelvis, groin and even the upper part of my legs. I’ve been dealing with this since I was about 13 and the doctor has never done any thing more than just an ultrasound and said oh you just have cysts, it’s no big deal. I know endometriosis and pcos run in my family along with ovarian and uterine cancers. I’m just looking for advise on what I should do.

    2. Katie

      Hi Kim

      These symptoms are exactly what I had prior to my first endo excision surgery! See a gynaecologist – it most certainly could still be endometriosis

    3. Tracy

      Yes. It is endometriosis again. I am in the same boat as you… I had my partial hysterectomy 11 years ago and guess what I am going thru again… I went to a gyno and she told me that I would now have to have my ovaries taken out or be put on BC to control it… BC really?!?!? Just take them out.

    4. melody muller

      Yes, it can come back. They need to do a full hysterectomy to get rid of the endometrosis. That’s what my doctor told me. So I’m scheduled for a full hysterectomy this next month.

    5. Hallie

      Yes. EndoMEtriosUS can be in both of your ovaries, in one single ovary, or be in one and transition to the other ovary after it is removed from the overy. I am not a professional but I would suggest a laposcopy. EndoMEtriosUS is serious and I know the struggle. PS: be aware that getting your last ovary removed will stop you from ever having children again.

      Hallie ❤️❤️ A 16 year old survivor of endoMEtriosUS.

  55. Kate

    Hi,

    I have had many issues with pelvic pain since I was in highschool. I was diagnosed with ovarian cysts, but the doctor assured me they would resolve on their own and there was no need to worry. Fast foward a few years later and I still had almost constant pain, which worsened around my period. My doctor suggested I see a specialist as he thought it may be endometriosis. After about a year waiting for the specialist appointment I was more than eager to find out forsure what was going on. To my dissappointment the doctor immediately gave me progesterone pills and that was that. I was so deflated at that point I didn’t ask all the questions I wanted answered. Sorry for the novel, I suppose my real question for you is, is it wrong of me to want a laproscopy? I was afraid to mention this to the specialiat becuase he seemed very dismissive, but I want to know forsure if I have a time limit on having kids, or if I even have a chance…

    Thanks for your time, I hope to hear from you.

    Kate

    1. Margaret Sterner

      Hi Kate,
      You are welcome to call our office at 408-358-2511 if you would like to chat about your case or have a complimentary record review. Certainly with pelvic pain a laparoscopy is in order, to find or rule out endometriosis or possible other causes of your pain. A good case review would also help. Please feel free to call if we can help you. Thank you for your post. Margaret

      1. Angel

        Hello I am 15 and have been dealing with end since i was 13 and i was wondering of there is an effective way to help deal with the excruciating pain?

    2. Mario

      As the husband of a young woman who has been through 6 or 7 or 8 laparoscopies, including one to remove her uterus at age 25, I can tell you that this person is not a specialist if he is being dismissive to you. I would find someone different if they are not meeting your physical and emotional needs. Good luck and God bless you. I may not have to feel the pain myself, but I have to witness my wife’s daily struggle, including intense endo pain less than a week after having another successful laparoscopy to remove endometriosis growths. The strength of the women who suffer from this is amazing. God bless you all.

    3. Cassandra

      I just wanted to say that reading over this brought tears to my eyes. I was only properly diagnosed with endometriosis this year, at the age of 23. I have been dealing with debilitating pain since I was 15, and had to leave school on the first day because I was in so much pain, I couldn’t see straight.

      It’s terrible that this isn’t a better known and talked about issue. Many women deal with it, without even knowing what is happening to them. Even now, I’m sitting at my desk and work, and working through the pain because I have to.

      This issue has caused my to lose jobs in the past, because I didn’t know what was wrong with me, and would call in when it flared up. For me, personally, it has caused irregular periods (sometimes I have them every two weeks), nausea, vomiting, dizziness, exhaustion, and weight loss from the inability to eat properly when these symptoms effect me.

      My job thinks I call in because I don’t want to be at work, and because physically I look fine, they think I’m lying if I ask to go home when it becomes too much. Ibuprofen generally does NOT help, but they say things like, “Well if you’re just going to sit at home doing nothing, why don’t you just sit at work, making money?”

      That’s only because they don’t understand how hard it is to stay awake and sitting upright, when all you want to do is curl up under warm blankets and sleep until I can’t feel it anymore.

      If there’s anything we can do, maybe work seminars or even bringing it up in schools, it would be amazing. I had no idea about this disease until I was diagnosed with it, and had been living with all my friends and family thinking I was a liar for years. That can be even more painful than the disease itself.

      1. Autumn

        Yes! I absolutely agree more light needs to be focused on Endometriosis. It’s a horrible, painful experience that can come at any time of day- clear out of the blue! You are exactly right how you just want to be at home under a warm blanket with warm compresses sleeping until no
        More pain! General public needs to be more aware of this problem and enlightened on how endometriosis patients are feeling!

      2. Martha

        Mario, your wife is lucky to have you. Thank you for caring! Cassandra, your post in December was just right on target. This invisible disease causes us to even doubt ourselves & believe we must be doing something wrong & that, therefore, we can fix it. But nothing seems to work; others invalidate us, & life feels more like a prison. One week we can feel normal, the next we’re lying in a bed, having quite suddenly become ‘inexplicably’ exhausted. At the same time our appetites have disappeared! Eating becomes a huge chore & we wonder how we suddenly became an invalid drinking Ensure (until we realize the soy might make things worse — “what the heck am I going to eat now?!”) When will we feel normal again, is the question on our minds. It’s infuriating to be lectured by others (such as some men who should be cursed with cramps every time they are arrogant – ha ha) who have never known such a lack of control in a cultural that values control over most everything.

      3. Ciara

        What you said is exactly what I’ve been dealing with since I was 14 and I’m 21 almost 22 now. Nobody understand and I’ve been through the same things as you. Loosing jobs, leaving school, people think ” it’s regualr period pain ” when really it’s not. People really do need to be aware of this disease and specialist need to help you in whatever way they can to your standards. I’ve recently just gotten off of Lutera ( Birth Control ) because the GYNO suggested it since I want to get pregnant but I would have rather went through the surgery knowing that there’s more of a chance of me conceiving. Now I feel like I’m just going to be waiting for nothing. Honestly breaks my heart how bad this disease effects women.

      4. Hallie

        Thank you Cassandra ❤️❤️ I think you have spoken for all who have endoMEtriosUS. Let’s spread the word about we who suffer. You who read this: go to the headmaster/principle of your school. Go to your boss. Tell them!! Any human with a BEATING heart in their chest will most certainly understand. Let’s spread awareness. For those of you who have this horrible but common and excruciating disease and social media, spread this hashtag, and someone start and account and then spread the word about both of these: #endoMEtriosUS @endoMEtriosUSawareness

        Love,
        Hallie❤️ 16 who has endoMEtriosUS

        PS: please read my last comment❤️

    4. Rachel Farrow

      So not wrong of you. I have the exact same history and I’m in the same boat. I’ve tried all the bc pills and even the progesterone shot … which induced a 7month- long active period (led to anemia), infeculitis, chronic yeast infections, UTIs, kidney infections, and 2 kidney stones.
      That was in TX

      FF»» now I live in Boulder Colorado and am meeting with my 3rd doctor here (7th total) Tuesday to schedule a laproscopy . I’m convinced it’ll be worth knowing for sure.

      Rachel, 20

    5. Hallie

      Hi Kate! My name is Hallie. I would just like to tell you of the old saying. “It is better to be safe than to be sorry.” You should DEFINITELY get a laposcopy. It is illegal for the doctor to deny you of this test, as it is a disease that is not visible outside of the body. This test is the only way to tell whether or not you have endometriosis. Btw, I am not just an observer of this disease. My aunt Ashley (had 3 miscarraiges) and aunt Mindy, also my mother (had a hysterectomy removing both ovaries ít was so bad, the doctor said it was the worst he had ever seen–at 23) and grandmother (1 ovary removed at 19), and my 2 cousins (who are sisters– had hysterectomies) Erica and Melissa, and great grandmother who had a hysterectomy when she was 17 and she had one ovary removed. Me and my sister have this disease as well. It is horrible- I feel all of your pain. Btw if you counted that makes at least 8 other ladies in my family (instant family I didn’t count 2nd cousins great aunts and such but I have a lot of them that have it. It runs horribly in our family).

      Love you all who suffer. #endoMEtriosis #fightingtogether #sendinglove #peopleneedto #stopthinkingwere #exaggerating

      Love you guys.
      Hallie, 16 and has endoMEtriosis

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