Dr. Cook’s Endometriosis & Pelvic Pain Blog
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June 17th
2010
What It Really Means to Have Endometriosis In last week’s post (“What is endometriosis?”), I said that endometriosis by definition is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. 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. 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. 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. 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. We would like to hear your thoughts, stories and experiences. Post a comment below and tell us what you think. Tags: endometriosis, pelvic pain, what is endometriosis? This entry was posted on Thursday, June 17th, 2010 at 13:00 and is filed under endometriosis, pelvic pain. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site. 236 Responses to “What It Really Means to Have Endometriosis” Leave a Reply |
I’m 27 and I’ve been suffering of very painful periods since I can remember.. I’ve always had pain during my cycle but I though it was normal.. A few yrs back I started getting pain not only during my menstrual but all the time.. Pain is so bad that i can’t walk its just too much..I was Diagnose with Endo a few months back cause before then nobody knew what was wrong, I recently had surgery on November to clean out my organs and all. My husband and I been trying to get pregnant for a while now and it just doesn’t happen.. Now after the surgery I was hoping for something to happen but nothing yet.. Its so frustrating when your trying so hard and nothing happens.. I don’t want to get treatments cause I really wanna have a baby very soon.. Its just all so confusing and I just don’t know what to do or where to turn. I’ll keep trying for a little longer to see what happens. Fingers crossed we’ll get pregnant someday.. I’m glad i found this website and now know that I’m not alone on this. my heart goes out to everybody in this situation..
i am a 25 year old, who has been dealing with IBS, since i was young and i have had to deal with the pain of my endometriosis since i was 17. i was lucky enough to be able to have a child three years ago… but since she was born the pain of the disease has taken a turn for the worse. Not only do i still deal with the IBS on a daily basis but without a period i have severe pain. It hurts me most to know that i am missing out on things with my daughter when i’m laid up in bed… And i cant speak for anyone else but standing EIGHT HOUR on my feet at a job or even a family get together just means to me that the heating pad and i will be meeting up when i get home. I don’t like that myself and may other women have to live in pain… I want nothing but help for all of us. May we get our Family life, Social life, Sex life, and CONTROL back.
Its is truly disheartening to see how many of us have to experience not only the pain but the constant neglect from our doctors who are supposed to be here to help. Instead they push us off to the side because “nothing can be done”. We spend so much time, money and efforts to find cures for other diseases, which I am in no way shape or form criticizing, but it would be nice to see someone..anyone taking a little time to find a better treatment for what we deal with. Pain meds no longer work for me and I keep putting off a hysterectomy because I cant deal with the knowledge that children are not in my future. I was diagnosed the day I turned 21 and I am now 30. I have been on Lupron and Depo neither of which really work. The Depo suppresses the menstrual cycle but not the pain. I have been on Depo since 22 and it emotional pain is a close runner up to the physical pain. Ever since I can remember I have wanted to be a mother and every 3 months when its time for more Depo I am in tears at the Doctors office. They look at me like I am exaggerating and all I want to say is “walk a day in my shoes and then look at me the same way”. I have an amazing boyfriend whom is an RN and he is extremely empathetic when I have pain but I know he really doesn’t get it. I fight through the pain of intercourse and the pain and bleeding that follows. The reality of the situation is no one but those of us which endure this disease truly understand what we go through. It would be nice to be able to have someone to talk to when the depression sets in or when a really bad pain day hits. Yeah I have friends but they don’t get it. I fight through pain at work which is difficult seeing as how I am a Police Officer and the weight of all my gear doesn’t exactly help when I’m having a pain day. I find myself fighting tears and trying to stay strong but all my strength is slowing dwindling away. I pray everyday for someone to care just a tiny bit and try and find a better treatment. I also pray that each of you are able to find peace and understanding with dealing with the day in day out BS of this disease.
My daughter who is 37 today has suffered with this all her life. after reading this article I really feel for her.
I was diagnosed with Stage 4 endo almost 2 years ago, during a surgery to remove chocolate cysts and have my right ovary removed. I always had very painful periods, but chalked it up to being a woman…now that I’m in my 40’s, the pain I feel is pretty much constant. I take pain pills daily, get tired out quickly, and yet still have to maintain a high-level career, home and family…I have been considering a full hysterectomy, but obviously, as I’ve read here and other places, that cannot guarantee eradication of this disease. Trying to explain to my husband the level of pain that I am in is nearly fruitless. He just looks at all of the pain pills I take and thinks I am an addict. The reality of it is that if I don’t take the pain pills, I can barely function. I am scared of Lupron treatments, as my GYN recommended to me right after she did my surgery. I’m sooo tired of feeling the need to prove to everyone that, although I look healthy on the outside, the pain remains on the inside…having this disease is kind of sad. Indeed.
Hello to all you ladies who share this HORRIBLE disorder. I call it a disorder rather than a disease, to me it makes me feel more normal.
I’ll be 33 this year and have had Endo since I was 17. I’ll be on surgery #9 (#9 coming this summer) and joke with my Dr’s that they should just add a zipper in me. Having a partial Hystro in 07 only helped a bit. Now instead of one huge (almost 12cm) endo tumor I have 4 lime sized ones on my only (right ovary). but I swear for me not being on birth control has leveled out my hormones and my cysts have slowed down on growth. Something my Dr’s didn’t think would happen.
Dr’s have had me on so many different birth control pills trying to list them they all escape my memory. Nothing helps, Lupron is from hell and depo is the Devil! Not even pain pills sometimes help, you feel like your being ripped apart & dying inside & forget about walking, sitting or trying to drive a 5 speed to the dr’s! Even on my good days I’m afraid to leave anywhere that has electricity. I live with my heating pad, I carry one in my purse. Really, seriously.. no joke! They are the best invention EVER!
I have a dirt bike and LOVE to go out and play and have fun but 80% of the time I’m unable to and it’s SO SAD. I’m missing out on life. When I think about it I cry, like now. This is a horrible disorder that has haunted me for almost 16yrs. It completely grabs me when I think about all these yrs that I have suffered. You know this is heredity (don’t think I spelled that right, sorry), both my aunts have this and my grandmother did too. But they all had kids young and had full Hystos. Plussss LUCKY me I have it the worst out of them all. So bad I had to have my appendix remove and it’s now covered my intestines, bladder, uterus…just about everything. My whole abdominal cavity I’ve had lasered as well as cauterized. It just gets worse and; worse. It’s even on my friggin liver! I mean come on!
I stopped taking birth control a year & a half ago. No babies! So I have an appt with a fertility Dr in 3 weeks to see if I’m fertile. I’m nervous, I already know the answer without going but I have to so I have no regrets. I don’t believe in IVF so it’s adoption for me. I guess that’s my path.
I feel so bad for anyone who has this disorder. It’s very misunderstood and not very accepted. Most people think you are faking the pain and even most Dr’s are leery about what’s going on inside and; can”t just cut you open to see.
I’ve been in and out of the ER so many times it’s unbelievable, but I do have to say since I’ve been off the pill I actually have LESS cramps. But I have had multiple transfusions from the bleeding.
So I wish everyone you all the best of luck and health! Happy 2012!
It’s weird, I don’t usually talk about my pain to anyone. I have been so used to having to fight daily for my health and my sanity that I think sometimes I think I truly do forget the REALITY of my situation. Recently through positive life changing events I have been stripped bare of false identities of me, (of all the things I wanted to be or others wanted me to be) with this I have joined a greater awareness between my body and my mind. My experiences tell me that there is a great healing power within. I have an appt. with my OBGYN in less than 3 weeks, I am a little nervous, this will be my 4th surgery in the past 8 1/2 years. Now there’s some perspective. Endometriosis is a root to not only physical but emotional pain for me. I’m going to ask my wife for a hysterectomy this holiday
Day to day I try to maintain moderate homeostasis by taking supplements for the pain.. Vitamin E enhances the production of B- cells, the immune cells that produce antibodies that destroy bacteria. It’s easy to get 30 to 60 milligrams every day of Vitamin E from a diet rich in seeds, vegetable oils, and grains. (flax seed is my favorite it contains both vitamin E & fiber). I also take Melaluca cranberry tablets, with the endo I am also HIGHLY prone to bladder infections, this is a great preventative,
Anyway I have blabbed on long enough, I am so glad that I found this website tonight, it’s refreshing and I going to need people to talk to about this in the months ahead!
I am only 26 years old, but I have been dealing with chronic pain my entire life. It started off as what they labeled IBS, and even though that was my label as a child the older I got in growth and puberty the pain and constant upset stomach got worse. I was in the schools nurses’ office between 3-5 times and week, and most of those times my mom had to leave work and pick me up. I went from doctor to doctor yet no one knew what to say because there was never any evidence to diagnose a real problem. My menstrual cycle was always extremely painful, and many times I was not able to focus while waiting for the Advil to kick in. As I got older, again, the pain continued to get worse and once I turned 21 I woke up one night in so much pain I was rushed to the ER. Still no one had any answers, and that same week I was again rushed back to the ER. Soon after, the doctors concluded that I “Might” have Endometriosis since my mother was diagnosed in the early-mid 1990’s, and Diagnosed with Adnomyosis in 2004. They didn’t perform surgery at the time because I had no health insurance…So, they put me on Lupron for 6months. Lupron was one of the worst drugs I’ve ever been exposed to, but it outweighed the extreme 24/7 pain I was in. My options where to either continue taking 35 Advil a day (which really wasn’t an option), or Lupron. Once Lupron was not an option they switched me to my nightmare, Depo Provera. I was on Depo for about 5 years straight and had to come off of it due to a recent discovery that I have Osteopenia in my spine, and slowly reduced bone loss everywhere else. I was seeing a Gyne pain specialist for about a year or two before I asked to have a Laparoscopy done to find out officially if I had any physical signs visible. Once the surgery was done they told me my uterus was 100% normal looking in size and shape; that I had no signs of lesions or scars. Unfortunately, I realized later that the surgeon did not perform a biopsy, and being a Surgical Technologist I know that in these types of diseases you need a biopsy to prove negative on a microscopic level, and also in my case I was treated for Endo long before I had surgery so visual signs of Endo may have cleared or be considered invisible. I feel that the surgeon helped me eliminate others concerns, but didn’t really do his job in helping me in an official diagnosis. I am very lost, angry, sad, and uncertain of which doctor or doctors can really help me find the answers I seek. I am only 26 years old so a hysterectomy is out of the question, and the “urge” to have children, if I can one day, is hard to cope with seeing hysterectomy is in my cards. I know that treatments will be the same regardless of an official diagnosis, but it would really help me to cope better with understanding and having something set in stone. I’ve suffered in pain since I was old enough to remember, and with my limitations I am now stuck on Loestrin 24 FE till I can find someone to really have empathy, compassion, and understanding that this disease has controlled every aspect of my life. I have missed so much schooling, family life, events with friends, and struggles to go forward with my goals and passions. Sadly, the only people that really understand are those who live the grind every day, and the TRUE doctors and nurses that are REALLY trying to find answers and help.
Ladies, there is hope for us we just have to be willing and able to search it out. I had a partial hysterectomy to find out that I now have endo, I have also found that it will take a body and mind make over to help with this pain, because what we are not told is there is no cure for what we have. We have to change what we eat, what think and try to control our stress levels. Hope this is inspiration to you all.
My daughter has endometriosis. It has gotten so bad that she has to be on pain pills most of the time. She sleeps a lot, and I worry, not only for her, but for her boys. I had no idea just how bad it was until I found a book at the bookstore and read up on it. Now I know, or I should say, I have a better understanding of the disease. I wish there was something I could do for her. I feel so helpless. I just want it to go away so that she can live again. So that she and her boys can have a happy life.
I’ve never been diagnosed with Endo. First time I seen a OB/GYN I told him my symptoms and pain. But because my flow wasn’t as heavy as he said it should be he did nothing but put me on the pill. I then told another Dr. that when I have my period and I use the toilet I feel like my uterus wants to fall right out of me and the flesh down there feels tight like I am going to tear open. He put me on Anaprox for the pain. I get severe rectal and vaginal pain during menstruation. It’s painful to go to the bathroom…it’s painful to sit. And I feel discouraged about making an appt with another Dr.. I am at my wits end! Afraid they will just push me aside and say, “Next!” Please pray for me as I will be making that appt soon and I hope to get some real answers and real treatment.
Hello,
I’m reading all of this & scared to accept the reality that is apparent in all of your messages. I have been to doctors who basically blame the pain on my weight. I recently went to an OB for a routine exam but also to get my questions answered about my weird/painful periods.
They haven’t always been this way, but in the last year has gotten heavier and the pain more intense. It is painful to urinate or BM during my period, Midol doesn’t really help…and i can barely bend over.
I’m 29, no children yet, and now scared I never will for two reasons, this “thing” in my body & the pain of sex…..
My last OB visit was terrible,he told me I was having problems because of my weight and that I was diabetic
( which I am not. He determined I had a Yeast infection, by just looking, and gave me meds for a YI. It may have been a YI, but that was not my only issue. He basically dismissed me as a fat/ diabetic, who he seemed disgusted by. …….
I don’t want to have surgeries, so I now put this in the power of my HP.
It’s scary, but I am hopeful. I am sorry for the pain we are all experiencing.
i have endometriosis and no one understands the pain we go through i always put on a brave face i have no pain free days i have pain all the time and it makes it very difficult to sleep because of the pain i have to take pain pills all the time
As i write this i am in tears, another visit to the doctor more pain medication, i cant remember the last day i haven’t had to scarf down a load of pills. I am 26 yrs old no kids and even though I’ve always had painful periods i thought it was normal. Then the first cyst ruptured and the pain would come and go, then the second cyst ruptured and i ended up in the hospital because nothing i took for the pain helped. I am now in constant pain, when it isnt my pelvis its , my back – my spine starts to feel it doesn’t belong in my body and should come out. When its not the back its th ehip and that depresses me the most, the pain is so unnatural. It goes right down my leg and makes it numb, then the pain goes all up the left side of my body. So i cant walk, scared to shower because the water passing over my back and hip causes horrible pain. Cant walk, cant work. Ive missed so much work, but when the pelvic pain is bad i cant sit, any bending forward of the pelvis causes the kinda pain that only those who know can understand. passing urine is horrible, a bowel movement even passing gas reduces me to tears. i have not so far taken anything that completely eradicates my pain. I’m tired so so tired. Worried about work, whats gonna become of my life. don’t want to lie but i’m tired of not having anything good to say when people ask how i’m doing. Done telling people i’m not pregnant when on bad days my tummy bloats till look like I’m 3mths pregnant. Tired of the pain truly – ive turned into a monster i dont recognise who i am when the pain is bad. I’m missing my life – days upon days pass with me stretched out on a bed in agony, i cant eve curl up in the fetal position. most of the past 4 mths is a blur. I’m scared, I’m so scared that the pain wont go away. i wake up now in pain, before id have at least 30sec before it started not now. i live on gravitate – or i wretch constantly and that only makes the tummy pain worse. how do you deal with this, the worry, the stress, the PAIN. Its all so much sometimes – doing the simplest task can take forever my brain i s so fogged from the pain. What do i do, how do i cope with this. its quite normal for me (someone who doesn’t like taking meds) to go past the limit everyday for all the classes of meds I’m using. What the endometriosis hasn’t done, I’m doing to further damage my body but i don’t know how else to deal with it. Pain truly changes who you are at an almost basic level. For all of you suffering out there whether its one day or everyday, whether its severe or mild-my heart goes out to you. Pray to Jehovah for strength of mind – beg for his holy spirit to sustain you and be sure that eventhe day when you are so ill u forget him, he will never forget you. Please don’t give up! Even if you have to live for just those few seconds when you forget – a joke a funny ad, something anything hold onto those moments for the rough ones. And I’m not saying this lightly because i know. I get depressed too, i want to sleep and not wake up for a mth sometimes but Jehovah gives me the strength. I love you all, and send you a hug that never expires because i will be depending on yours. yes our tummy’s are quite stupid but we are all beautiful and smart and strong and we will continue for all those wh0 gave up hope all those who have fallen due to this horrible disease. We survive and keep fighting and the day u cant fight I’ll fight for you just return the favor
reading this and crying feels as if someone out there understands! Not one dr I’ve been to truly understands! I also like many others feel as if I’m looked down upon! THE PAIN IS REAL!!!!!!!!!
After reading this article by Dr. Cook and experiencing my own drama, it is abundantly clear that the medical community at large, outside of OB/GYN’s need more education in regards to Endometriosis. I’ve struggled with pain for over five years and the list of diagnosis and tests are endless. Sad thing was I went to an OB/GYN first and because the pain also refers into my upper abdomen, I was sent to a surgeon rather than going through a regular internal examination. I was told that it was a possible gluten allergy, I’ve had an EGD, a Colonoscopy – which was evil at its very core – another EGD, more CT scans than I can count, multiple ultrasounds – none of which showed anything. Finally, I made the one hour trek to the OB/GYN I used to see before I was married and moved and she was floored that I’d suffered with it so long. I’m scheduled for surgery next week and I am actually excited. The one difference that I can say is that after reading a great many previous posts, I am truly a blessed woman to have a husband who not only understands but has been supportive and adamant in securing treatment during this whole process.
Best of luck to you all!
I was diagnosed with endo when my oldest daughter was 1 and1/2yrs.old, she’s 24 now. I had to start birth control at 15 because my periods were so heavy and painful that I missed school at least 3 to4 days a month.I had my first of 4 miscarriages at age 20. To this day I swear it was by nothing short of a miracle that I have my 3 girls, all of them were difficult pregnancies and deliveries because of the endo. Three years after the birth of my last baby the endo was so out of control I had a total hysterectomy (ovaries,tubes,cervix-the works) It was definitely the best decision for me to help with my pain,or so I thought. About 6mths.ago I started having unbelievable pelvic pain again.I know it’s from the endo.,my PCP agrees with me, however my GYNO doesn’t. So I have been spending the last 2 months searching for a doctor who has experience with pelvic pain and endo. Sometimes I feel like we are a separate species because unless you have this horrible disease you can’t possibly understand the pain and discomfort. I had open heart surgery,a heart attack,breast cancer (2lumpectomies), thyroid disease, gall bladder disease (had it removed )and nothing hurts like endometriosis.I’m so sorry for all of you, but it is comforting to know I am not alone with my pain and my depression. God bless all
I was diagnosed with endometriosis a few months ago – in my case I hadn’t been seeking a diagnosis. Rather, I went for my first routine check-up with a gynecologist (something I’d been putting off). During the appointment the doctor conducted a routine internal ultrasound, revealing large bilateral endometriomas.
It came as a shock. My first thought was: will I be able to have children? I’d read about endometriosis in passing a while ago but never joined the dots to suspect the pain I experienced might warrant further investigation. The problem is that pelvic pain in women is very common – and if something is common it can easily be mistaken as being ‘normal’. And if it’s normal, then you just have to accept it and live with it, right?
The well-meaning doctor advised laparoscopic drainage of the cysts followed by GnRH-agonists and suggested I might consider trying to get pregnant after that. He offered no prognosis or long-term plan. Frankly this didn’t appeal. I started reading through the relevant scientific literature and soon came to the conclusion that excision would offer my best chance of long-term symptom relief and restored fertility. Instead of proceeding I arranged for a 2nd opinion with a leading endometriosis specialist in advanced endoscopic excisional surgery. I believe this was a cross-roads – one path leading to chronic, recurrent disease, repeated treatments and the other to effective treatment and an optimal chance of fertility further down the line. I had my operation – the cysts have been excised along with deep infiltrating recto-vaginal endometriosis. I feel great. It’s like emerging from being underwater for over a decade. The amount of pain killers I need during menstruation is less than a quarter of that prior to the surgery. The stabbing pains are all but gone. Sex is pain free – I had never realized that was how it was meant to feel! And now I do feel like a vibrant and desirable woman! All I can say is that it’s important to choose your specialist carefully. Those doctors who specialize in wide excisional techniques – who have made the personal and financial investment to develop the advanced skills needed to operate on those with severe forms of this disease are making a real difference and giving hope to women like me – and hopefully can bring about a tide of change so that women in future don’t have to needlessly undergo a long period of mismanagement and ultimately needless suffering.
I feel for all of you. I had to have a total hysterectomy at age 25 due to Stage 4 endometriosis. For 2 years prior to that I was on lupron for 6 months and on and off all types of hormone meds. I am now 34 and found out that I have osteoporosis (I never had a fighting chance) because of being postmenopausal so long and the depo-lupron also can weaken the bones. This past Sept, I was in severe pain again and once again they made me feel like I was crazy. Finally, someone listened to me when I keep telling them it felt like it did when I had endometriosis. I had a laparoscopy and the damn endometriosis was back! Some doctors (educated guessers) told me that it was impossible because I didn’t have a uterus or cervix, well they were wrong. I feel for all of you and I just wish that people would listen to us. We know OUR bodies! Best of luck to all of you.
Priscilla- I’m so very sorry about everything you’re going through.
i was told by my Dr. I had endo, and they did an ultrasound to make sure no cysts, and my us came back normal. Abnormal I found put my dr. didn’t write down endo on my chart so my nurse basically called me a liar..
I now have to go somewhere else I cant afford.. But I have to be diagnosed. I have 2 children. I cant bear not being able to play with them all the time. I’m.very lucky to have my husband though..
My only advice is try the natural baking soda and water. I have for 3 days &; already notice a difference. Always look to God in the hard times.. I hope it gets easier for you.
I have never read such a spot on article about this. I myself have had a tough time relaying it to anyone who doesn’t have it or know about it themselves. Most importantly my husband. I can’t wait for him to read this (right after the football game! lol) I am scheduled for a hysterectomy at the end of this month and have been prolonging the inevitable for the last 3 yrs. Christmas Eve to be exact, when I was scheduled the 1st time for a hyst, but due to everyone around me having multiple concerns (You are only 30! Are you sure you should do this? you can’t ever put it back in? Etc etc…). Due to heavy flow and multiple menopausal symptoms I finally went back to the MD (as opposed to the naturopaths, and endocrinologists I had seen for the past 3 years!) I had a extreme failed ablation and laproscopy where my dr. found severe ENDO, inside and out of my uterus, my appendix attached to my uterus covered in ENDO, and spots surrounding. I was at a surgery center so hyst at the time was not an option. Follow that with horrible recovery and drug reactions. Since then I have had massive pain, even heavier flow and insane bloating! I am so excited to see how badly I was feeling when I find out how good I can feel! I wish I would have went with my gut 3 yrs ago… I am blessed to have 3 babies (in fact, according to my Dr, a MIRACLE!!!) and know that I am done with my uterus. I am thankful to have the peace of mind for the rest of my life that I will be doing the right thing. I have been suffering from ENDO since I was 13 (started menst. at 10). It’s been a long 20 years!!! I remember after my surgery this last time, asking my surgeon if it was all in my head as I had somewhat suspected and questioned myself for years, as my pain tolerance is high and I don’t know anyone who suffers from like I seem to. She hugged me and told me “No, quite the opposite… But I have a plan and you are going to feel so much better!!!” I am banking on it!!!
I just heard recently that hysts are a gift from Jesus… I am positive I will concur!!!
After reading through these it makes me feel sad but also relieved that I’m not the only one dealing with idiot doctors that pass the buck. God’s honest truth is there is little to no compassion for chronic pain sufferers. They just put it out of their minds that we are truly suffering or they don’t care. I started having symptoms at the onset of my period also at age 12. After the birth of my son I started to have severe pain from adhesion that had built up and caused my ovaries to wrap around and stick to my uterus. After 2 painful laparoscopies of which the doctors did very little. I am now completely disabled and in bed 24/7. If the doctor actually gave me an appropriate amount of pain medicine I might be able to play with my children or do my laundry but no….I have to be limited so as not to get “addicted” because God forbid I should actually FUNCTION!! Isn’t that was pain medication is for?? Now I can’t sleep, unable to eat because I have severe intrusive endo on my bowels. Losing weight, I look horrible and I feel like I’m dying. The other day I went to the ER because they were worried I had a bowel obstruction. They said from my symptoms I could have one at any time….so I’m basically a ticking time bomb. But they don’t want to treat the actual illness just the complications. And they think I’M the crazy one?!?!?!
Hi Casey,
I feel your pain and all you other ladies out there. I had endo (endometriosis) for a very long time but was not diagnosed until the age of 31. I started taking birth control for about a year, then I started taking hormones for the endo. Then 15 years later I had surgery. But a doctor said I still have endo. because I still have my ovaries. I told him the problem I was having when being intimate with partner. So now I need to have my ovaries removed to get rid of the pain that I am experiencing during intimacy and the endo. Seems weird because I thought it was just in the uterus. But I know having had heavy periods seemed endless. Seemed like the period wouldn’t go away. I had to at times use 3 pads, because of the heavy bleeding. So I was already tired and fed up with the excessive bleeding and told my doctor just do a hysterectomy. It’s not like I was going to have kids on account of another health issue that I am dealing with. So please don’t let the endo. frustrate you because you can make it worse. I’ve been through that before.
Casey, talk to your doctor to see what options are out there for you. And don’t be scared, just leave it all up to the doctors. They know what you are going thru or experiencing. Have faith that something will get done or if they have you on medicine, that it will work. You are not alone. Like the Michael Jackson song. Stay positive and don’t get frustrated o.k. As you can see a lot of ladies are going thru the same thing that you are. Don’t be afraid. Talk to your doctor. Don’t let the endo. get to you. If the your doctor does not want to help you find another doctor.
Lavita go see another doctor.
Simone go see another doctor, I had rectum pain as well.
Nikki if your doctor does not take out your ovaries ask him will still have endometriosis (that’s only if you have a hysterectomy). Because a doctor says that I still have endo. while I still have my ovaries. Don’t forget to ask. If you read my post at the beginning then you can see what I am talking about.
I have had two surgeries to get rid of the endo as well as the shot treatments and it keeps coming back, i was not as lucky as some of the other posts. i had seen doctors about my sever cramps since i was 12 and was often told it was because i was slightly overweight or that it was a gastric problem. even after the two surgeries i can feel it coming back yet again, my doctor said the only way to fully get rid of it is to remove my ovaries, which i would do in a heartbeat to relieve myself of this pain, yet she wont do it because she feels i am too young to make the decision of not having kids at this point in my life. I’m 22, i just want to go through one day without pain, has anyone found a way to do that??
I had always had really bad cramps as a teen but it wasn’t until I was in my twenties that I read an article in Women’s Day about endo and diagnosed myself. No doctor up until that point told me or even tested me for it. I had laproscopic surgery in 2005 and it worked until about 2009 and now it’s back with a vengeance. I am almost completely shut down for two-three days a month and I really don’t know what to do aside from a hysterectomy. I have a child and am 40 so I have been putting off going to the doctors our of frustration but I am going to ask for a hysterectomy just so I can live a normal life.
I must say I’m one of the lucky ones. My mother has endo and it took years for doctors to diagnose her when she was younger, so when I had my first period at 9 and similar pains to my mother, it didn’t take them long to put two and two together. What concerns me though is that because they caught it so early, I have been on birth control since I was 11 years old and on the 3 month cycle since 13, now being 23. I have no idea what the natural function on my body is and no idea how it would react to my not being on medications. A recent move to a new city made me unable to get medication and I was so scared what would happen once off it, luckily I was able to get a doctor to see me last minute. I haven’t had any tests yet to see how severe of a case I have out of fear of what I would be told. I know eventually I will have to have some surgery but I am not looking forward to that day at all.
I had my first period at 10 years old from the start it was very painful. My mom was sympathetic and tried her best to make me comfortable. At 12 yrs old I saw a dr about it for the 1st time she told my mom she would give me birth control 2 regulate my cycle but that’s all she could do because there was nothing wrong with me. I am now 21 years old my husband and I suffered through an ectopic pregnancy and a miscarriage at 8 weeks along. I miscarried naturally so during a follow up ultrasound the dr discovered that I have a uterine septum. In September 2011 I had hysterscopy and laproscopy to remove part of the septum during the surgery they found that also have severe endometriosis. The dr. treated my uterus and ovaries but couldn’t treat my bowel or bladder. I was shocked that after 11 years I finally had a reason for all the pain and most of all I wasn’t crazy or a hypochondriac! The good news is my husband and I can start trying in a week after finishing my 3rd month of because. The dr is confident that we will get pregnant within the 1st few months! I will not be able to carry to term because of the septum but I’m giving all my worries to God and praying for a miracle. Prayers for everyone suffering from endometriosis and uterine anomalies.. I wish you all the best of luck
hello, i have been dealing with this since i was 22 years old after I had my second child . I started having month long excruciating periods.Then had first laproscopic surgery they found the endo. then went on the first of many birth control pills that didn’t help. Then had endo. ablation helped with the heavy bleeding but the pain just got worse. i am so happy to have found this site i was beginning to believe maybe it was all in my head the way the doctors make you feel. Its every day i am in misery, for about 6 months now it has gotten so bad that i had to quit having sex. Sex has been painful for around 2 years but i’ve always been told if your husband isn’t getting it at home he will somewhere else, finally i just told him how bad it hurts and he just broke down crying told me i should have told him he would never want me to do something that was hurting me and i told him i was afraid he would leave me he said he loved me for me not just sex, and told me WE would get through this that meant alot now we are considering a hysterectomy. i just hope it works i don’t know how much longer i can deal with this it feels like i’m at then end of my rope. thanks so much for sharing your stories.it helps to know I’m not alone in this that there are other women with the same problem.
I’m 23 and i just had surgery on the 8th of December as a last ditch effort. I have always had very painful 2 week periods since i was 11. All my doctors told me i have a tilted uterus and it was due to that. Then when i turned 23 i started bleeding non-stop every day! I had pain bad and everyone kept telling me it was cramping or ovulation. I bleed for 4 months straight doing ultra sounds and hormone pills and having such great pain i would fall to my knees shaking and crying. Finally a doc had me take an extreme amount of birth control and it went away for about 2 months and came back with a vengeance! again i went to the docs they told me i had a dysfunctional uterus! all they could do for me was put me on birth control or deal with the pain. Needless to say I sought out another doc and i was crying telling him all the stuff i had gone through all the bleeding the pain that would come out of no where the mass fatigue the frustration! he gave me a lap and he found an extremely large spot of endometriosis on my left side speckles everywhere else and scar tissue on my intestines. I finally felt relieved and justified i wasn’t insane and now people know i wasn’t looking for pity and attention. I just really hate how this disease is so shady and very little is known about it since it is very common and disabling for many women!
I am 25 now and I am trying to get pregnant from I say I do in 2006 and until this day there is no good news. It is very frustrated and very depressing and the DR said I have PCOS and endomretriosis and you know that is very hard to have PCOS and endo. When I was a teenager I use to have severe pain very time I had my period, right now I am not seeing a period, if the DR doesn’tt put me on medication. The other thing I realize is that I am have pain in the rectum area and its very disturbing at night when I am sleeping. I really need some answer ASAP. Very time I tell a DR about the pain in the rectum area they do nothing about it. And I am crying for some help help help help help help please
I have had endo for 30 or more years. I am in tears reading all the comments from other women who suffer from this disease because I can relate to every one.I have had a total of 9 surgeries, pain medications,depo,and a host of non related procedures I let medical professional do just to say I tried that. I am mentally and physically exhausted and want to go on disability from my job, but I have a medical doctor who treats me like it is all in my head. I have 2 children that I was told by doctors would never happen. I am looking for a doctor to help.
I was just told that I may have endometriosis. I’ve had a lot of issues for a long time. I’m pretty scared. I can’t take the pain any longer I was thinking I was going through menopause. The pain is so intense sometimes that I can’t go on with everyday life. I’m crying right now thinking about the things I have missed out on because of the pain….any advice? or just someone to talk to about this would help
I was ‘diagnosed’ with endo when I was around 14 years old (29 now). I was put on Depo long term… never knowing what it could cause… now I fight infertility. The endo pain has come back… but after having a lap they said that the endo is not severe enough to be causing the pain I am having and are trying to push me off on other specialists… even though those specialist say there is nothing wrong with be besides the endo!! It boils down to no doctor wants a chronic pain patient. I do have another chronic pain disease called Ehlers Danlos which causes severe joint pain. So while I am receiving treatment for that… the endo pain surpassed the Ehlers Danlos pain for the 5 days of my period. The only options I have been offered is continuous birth control or “deal with the pain”. I really don’t think that is fair. Missing college and work for 5 days every month is not an option either. So what do you do? I have seen 5 doctors in the area for the endo… it always ends the same way… being told they can’t help me or being shoved off on other doctors.
I always had painful periods my first when I was 10! As I got older I couldn’t function I would cramp pass large clots and run a fever throw up it was horrible very 23 days a period. I went to a doctor when I couldn’t stand the pain and of course birth control! I have three sons and when I turned 34 my doctor said end she did a procedure and it was true I had it! A year later I had a hysterectomy my doctor said just take out the uterus and it would go away!! Well it didn’t he botched the surgery my bladder,bowels and vagina were left hanging! A year later after the same doctor told me now its in my head I had another surgery different doctor and he told me the first surgeon messed up. now I can’t stand or lift I was fired from my job and now I have a secondary appendicitis but I have no appendix. My husband won’t touch me he wants a divorce I’m now 40 years old and alone no money and the procedures I need are constantly more money that I don’t have!!! Menopause sucks and I can’t have estrogen now what should I just accept my fate I’m doomed.
After years of pain i just found out that i have endo. I have pain every day it never goes away. I lost my job lost most of my friend and most of my family think I’m lying about the pain. I am 21 years old and it real feeling good to see that i m not the only one going throw this. I have a 2 year old son and i can’t even get out of bed to take him to the park. I have tried to go shopping “cant do it” having endo has put a toll on my life.
I have had endometriosis since I was 14 years old, I am now 25. I have had three surgeries, been on countless hormone remedies and even went through “fake” menopause when I was 16. Sometimes the pain is sooo intense I literally feel like I am going to die. I wish there was something that could be done other than surgeries and hormones. When I go to the doctors I feel like they think I am exaggerating the pain I experience and that makes me feel like I’m crazy or something and that this kind of pain is normal, now I am suffering untreated. Where did the compassion go? I am thankful for finding this website and knowing that I am not alone. These symptoms effect me emotionally physically. The fact that I cannot have children breaks my heart…