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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.

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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.

383 Responses to “What It Really Means to Have Endometriosis”

  1. Krystal says:

    I was diagnosed in 2010 after having my first lap this disease has consumed and destroyed my life! I am in constant pain my daily pain level has escalated to a 8 or 9 out of 10. I am from the Bahamas and have been unemployed for two years because of this disease. My doctors here are clueless I have been on Lupron immediately after being diagnosed with the disease after roughly 5 months on that ungodly drug I tried to kill myself. No one cared. The doctors all patronized me and continued to pump me full of useless expensive drugs! A 3 month shot of Lupron in the Bahamas costs nearly $1,000! After Lupron failed me I was put on breast cancer pulls then zoladex which is primarily a prostrate cancer pill. I have gone through numerous strong pain killers morphine, voltraen, baralgen just to name a few! Nothing helps the pain comes back with a vengeance! For the past 3 months my pain levels have gone off the charts and I was in and out of the local emergency room at least once per week for two months often times having to wait up to 14 hours before am seen by a doctor who is normally very rude and condesending to me. I’ve spent my live’s savings buying every prescription my doctors say would help me. I’ve gained almost 40 pounds and have suffered tremendous side effects from the buffet of drugs I was put on ie chest pains,light headedness, the left side of my body going numb, my hands and legs swelling up and going numb. Am no scheduled for my second lap in 2 years on July 2nd my new doctor suspects that the endo had spread to my bladder, I have no money to take care of me and my daughter and most days I can’t even get out of my bed! I know this all sounds utterly terrible but I want to at least acknowledge God for being so good to me as I continue to fight this devastating disease

  2. lilmisscheeky says:

    hey everyone, i myself do not have this horrible disease but someone very close to me has it very badly. she had had 37 operations in the last 20 years and amazingly she has still somehow managed to have 2 children before having a hysterectomy at 30 something. Just felt like I’d contribute and tell anyone suffering from this to not give up with having children, she was told she would never had children and yet she has two! I also wanted to share how proud I am of how she deals with the monotonous pain she experiences on a daily basis; she takes very strong medication every day and sometimes can barely move from the pain she experiences :/ hang in there girls and DO NOT SUFFER IN SILENCE, lots of love xx

  3. Bibi says:

    I was just recently diagnosed with endometreosis in menopause! I stopped having a period seven months ago all perfectly normal for one in her mid fifties. For the past three months Ive had severe cramping, dizziness leg, thigh and abdominal pain. I’m heart broken to think a teen is experiencing what I thought wa “old lady syndrome” Scheduled for a hysterectomy soon.

  4. Nicole says:

    I have has endo. Since I was 14 I’m now 24 my ob/gyn at the time told me there is not cure only treatments to help. He also told me that he recommend a hystarectomy. Well being 14 that was out of the question I was determined to have a family . So I started on bc. Well it worked at first then I meet my fiance and finished school had minor issues but we decided to start our family cause I was scared to wait. We got pregnant right away. Well after 6 weeks postpartum I had sever pains so bad I couldn’t breastfeed. At this point I was diagnosed with ovarian cysts. So I tried the IUD sad to say I loved it but it didn’t help my cysts any. I had a cyst that grew so large it retracted the strings to the IUD and I had to have a DNC to get it remove a year and a half after it was put in. But it didn’t explain all he pain I was having so they did my 2nd laparoscopy . Endo returned full force this scared me so bad I hid from the docs. My fiancé and I decided to try for our second child a few months later I was pregnant. After I was ok I tried a few more bc nothing helped and at the 2 yr mark on the dot I started bleeding and we tried everything to get it to stop short of Lupron shots . I had 7 days that I wouldn’t bleed so again we decided to try for the last child that we wanted. Again in a few months I was able to get pregnant. I begged for a complete hysterectomy the whole pregnancy and had to fight my insurance to approve it. I bled and was in pain the whole 2 months after having my son on valentines day his past year I had to go thru a tubal ligation before I could get my hysterectomy to show the insurance we tried everything. May 25 I had my complete hysterectomy and made sure to talk to my doc before I went under and stress again to remove everything. I am 2 weeks into my healing still in pain and scared that this doesn’t help my endo and only solved the cyst problem. I have migraines, cramps, leg pains, hot flashes and night sweats have a UTI that’s getting treated. All I’m getting from my doctor is that’s part of the hormone changes and hope he’s right. I guess only time will tell. But I totally understand about not wanting to be in pain anymore and no one really understanding and calling u a hypochondriac.

  5. Kristen says:

    Wow I am 25 years old no kids and these posts make me want to cry…. I started my period when I was 10 going on 11 and every since I can remember I have had horrible periods….periods that I wouldn’t even be able to walk but I had to…. my doc would tell me that it is normal blah blah blah…. Well even when i wasn’t on my period I would have pains in my stomach and would go to urgent care the docs made me feel as if I was crazy i remember one even telling me it was in my head…. Well as I got older the pain got worse,,,I would go every year to get my pap and I have other problems so I would go every 6months I would tell my doc how sex was painful and she said it was in my head it was probably me thinking that the nuva ring was hurting me…. well i went to my real OBGYN and he just did a pelvic exam I started crying it hurt so bad… He told me you have endo I didn’t know what it was or what to think… I just had surgery May 25h 2012 and I hope that it helps but seeing all these posts makes me see I am not alone… We just gotta keep being strong I guess

  6. Tiffany says:

    I am 32 yrs. Old and for me like most of the women I have said I’ve always had terrible periods growing up I missed school every month. I was always told I just have bad periods so that’s what I went with. I found out about 5 yrs Ago I had cyst on my ovaries I had some pain went to the Dr. She put me on birth control pills something I really didn’t want to do but because I wasn’t educated or told what I was really facing I took them and they did shrink. Almost a month ago I had to be taken from my job in an ambulance because of this unbearable pain I was having. That’s when I finally figured out what this painful thing is endometriosis I have been to work maybe four times out of a 30 day period my sick and vacation time is gone we are on a point system and let’s just say I’m very close to losing my job and the killing part about this whole situation is that my Dr. My obgyn has pretty much said I should be ok by now. Well I am not ok still in pain the 800 Morton no longer works and I have no idea what else to but pray and ask God to heal me. This is taking away my lively hood and no one seems to care or even begin to understand. It’s good to know I’m not alone!!!

  7. karen says:

    My name is Karen. I ave had Endo since I was in my early twenties. 4 lost pregnancies 2 tubal’s and 2 miscarriages (surgery 4 times) I never had a hysterectomy. Now at 47 I have this horrible pain on my left side lower abdomen, I have an apt next week. I wonder is Endo haunting me again or is it something more serious? Ovary or Bowel problems? Scary. Anyhow, I suffered with Endo pain, sometimes doubled over crying. I used to hot pack my stomach and blistered myself with the heat once. Suffer is not the word. Good luck to you all. God Bless. My heart goes out to you girls.

  8. Cristina says:

    Last night I was reading many stories from everyone. It really brought me to tears to know I’m not the only one suffering. I am 31 with two kids. I have Endometriosis. I started my period when I was almost 11. My periods have always been painful,heavy and with debilitating cramps. I guess that I felt that this was normal. When I got married and had my first child the same year,everything got worse. Finally,after years of pain,I felt like I got an answer to why things were so bad. My OB/GYN suggested I had Endo. I researched it and it sounded like it. So I had laparoscopic surgery and sure enough was officially diagnosed. I did get 2years of relief from the surgery,but soon enough the Endo made a vicious return. How it has changed my life is I am sidelined every two weeks for about a week for pain so bad,that I would prefer labor pains. The amount of blood I lose is crazy,that I am very anemic on high amount of iron. We have had 6 miscarriages. The physical and emotional pain is devastating,and that’s an understatement. However, we had a miracle baby who was born almost nine years to the day my oldest was born. I do feel blessed with my boys. But I can not participate in being their momma. That’s the hardest thing to me,watching my boys live their lives and not being able to be there the way I should be. I was recently hospitalized for the pain I was in. It took four days there to bring my pain level to a tolerable #8. I have been in my bed since. After speaking to the OB/GYN we are gonna try the Mirena. But unfortunately, she also believes I have Adenomyosis,which basically is Endometriosis inside the uterus. I try to be positive. I do think ladies who have Endo have a deep inner strength. The physical pain is an enemy that fights dirty. But after reading the stories on this site shows that we have strength beyond belief. The emotional pain may not scar us the way the physical pain does. But support from our families,friends, and women who share the same pain gives us the extra push to keep going. Stay strong ladies, thank u all who shared their stories it is greatly appreciated.

  9. Rose Bell says:

    i am 38 years old and was just diagnosed with endo. i am having a hyst. done on June 18th and cannot wait. I am in so much pain it is unbearable. Of course everyone around me doesn’t understand unless they have went through it. My legs hurt so bad can hardly walk. This is a very painful disease and to all the women that have had to deal with it I applaud you. I am also glad that this site is here so I know i’m not alone in this. Thanks much for everyone’s comments.

  10. Stacy says:

    I can remember the exact day I got my period, it was August 11, twenty four years ago. I am thirty four and without children. My family was on a bus traveling from California to Florida. I had just turned ten when I got the most excruciating pain imaginable. Having been so young and not physically bleeding, no one knew what was happening. The bus driver wanted to drive off course to take me to the hospital. Instead my mother gave me some Tylenol , which helped enough not to go to the hospital. The next month the same thing happened again. I still was not bleeding. It wasn’t until the third month that I finally got the answer to why I was in so much pain. It was my period. At the age of twelve I was on birth control . The pain never went away and I had a lap done at seventeen. The endo was everywhere. On my bowels, bladder and ovaries. The surgery lasted almost three hours. I had some relief for about four months.
    I have been to countless drs and spent many evenings at the hospital. In fact ,the first time my boyfriend met my mother was at the hospital. I can’t even have sex without going to the hospital. I feel so bad for him. He is very understanding.
    Recently, I have been getting cysts almost every three months. The only thing the doctors want to do is put me back on bc. I was on the depo shot and an oral bc at the same time in hopes of stopping my periods. However, they continued. I ended up gaining almost forty pounds and had the worst mood swings possible. I literally almost lost my job because of them.
    I am going to the dr tomorrow because I have another cyst. Hopefully they will be able to come up with something that will help with the pain. I know a hysterectomy is not always the answer for endo, but perhaps it can help with the cysts. I have no insurance and don’t know what to do.

  11. Brenda says:

    I am 31 years old, when I was about 13 years old I had the most unbearable pain. My mother took me to the Dr and ER constantly and to my surprise it was always all negative results. I missed days of school every month. After about 4 years my entire family didn’t believe me because all the xrays, ultra sounds, and tests were all negative. At one point the Dr pulled my mother aside and told her I was looking for attention. When I was 19 I had an ectopic pregnancy and needed a new OBGYN. After a year with this Dr he diagnosed me with Endo. I had my first surgery in 2002 then I went on Lupron for 6 months. My husband and I wanted my body to heal so we opted out of more birth control and within a month I was pregnant and in 2003 we had a healthy little girl. I had no issues for 3 years and we got pregnant with our son and had him in 2007. By 2010 the pain was back and in full force so I had a hysterectomy, leaving the tubes and ovaries. 5 months later I became moody, exhausted to the point I couldn’t get out of bed, my legs were always throbbing, and then I started bleeding. I went to the OBGYN right away and he thought my tubes had shifted so within the week I went in for another surgery to remove them, but that wasn’t the case. I had adhesions and my intestines were stuck to them like glue in a knot like form. I had bowel in there for about 5 months. Thankfully nothing more serious happened to me. I was feeling so much better within 2 days of the surgery, unfortunately that didn’t last long and on the 3rd day I was pale, couldn’t walk, couldn’t breathe, couldn’t eat so off to the OBGYN who rushed me to the hospital. I had ileus which meant I had a temporary paralysis in my intestines. So I had another night in hospital basically trying to wake up my intestines. Here I am 2012, almost 20 years from my first painful experience with Endo and I am facing another surgery for adhesions but who knows what will be found once they get inside. I am lucky to have 2 beautiful children and a wonderful supporting husband. Looking back at my teenage years when I needed the support from family and I wanted answers from Drs I don’t know how I got through those days. I wish we could have more awareness for young girls and their families because growing up in pain and feeling alone makes you start to believe you are crazy. I am glad to see these posts as it is helpful to understand our pain and to know that we are not alone. But we get these links because we know what the name of our disease is called, what about all the young girls or women who have no idea? Good Luck to all the women out there and don’t be embarrassed of your disease. Don’t take no for an answer, only you know how you feel! Speak up about your disease because the person listening maybe the person who is experiencing the same pain.

  12. Stacy says:

    I am almost 35, mother of 3 boys. I’ve had pain for years. Long periods, short periods sometimes no periods or bleeding in between periods. I’ve ended up in the hospital hemorrhaging. Its like a roller coaster. I’ve had pains so horrible that I’m not sure how I even manage to stay standing. It hurts worse than when I was in labor. Without insurance I try not to do wasteful things (like go to the dr). The pain finally got bad enough that I found myself a dr. She wants to do tests to be positive, but she is sure its endometriosis. I started doing research and everything I was reading sounded like me except it all sounded like less of a big deal. I am glad I got to read all these comments. This is the people behind the disease and no clinical description can even describe the pain and emotions. I had thought maybe I was imagining this pain or maybe I was just whinny. I am not crazy, just in pain.

  13. Athena says:

    Thank you so much. Could not have put it any better myself. I started menses at the age of 10. I am now 22 years old. I’ve struggled with endometriosis for 12 years now. There were days in high school you would find me laying on the classroom floor in tears. A few months ago I started my period and was on a bus heading towards school. I had no pain killers on hand and had to step off the bus in mid route. I nearly fainted in a department store I basically fell into. The gentlemen in there was very helpful and called someone to help me. Needless to say this disease is EXTREMELY painful and can be VERY debilitating during menstruation. To all of the women out there fighting I applaud you.

  14. Matilda says:

    I’m 46 yrs old and I have Endo, I did not know that a lot of women had this, When I found out I had it 2 yrs ago I was lost about it, all I know is that I hurt so bad, My husband lost his job so I could not find a Dr that would take my case because I do not have any Ins, So now our county fund accepted my app for the hosp but not the Dr, I found a Dr that will do my Hysterectomy but for two thousand so I found a fund that approved my app to pay 1 thousand so now i’m trying to find other way’s to raise the money, I told my husband that I can’t handle this pain anymore, I’m so glad i’m not the only one going thru this, Nobody knows but us, I wish everyone knew about this disease. God Bless You All.

  15. TORRIE says:

    FOUND OUT I HAD ENDO A FEW MONTHS AGO, MY PERIODS ARE SO HEAVY. I HAVE NEVER BLEED THIS MUCH EVER. I’M 34 AND WOULD LOVE TO HAVE ANOTHER CHILD. MY FIANCE UNDERSTANDS ME AND KNOWS ITS GOING TO BE CLOSE TO IMPOSSIBLE FOR US TO GET PREGNANT. CAN ANYONE TELL ME IF ITS POSSIBLE TO HAVE CHILDREN WITH THIS DISEASE. PRAYERS TO EVERYONE!

  16. Maggie says:

    This website almost made me start crying. I am 24 and I found out when I was 15 that I had endo. This past year it’s gotten worse. I suffer every day and I’ve been to every sort of doctor. As most as ya’ll have already experienced, the test never show anything. Doctors disregard my pain. They are taking me off of my pain meds and I am just about to have my 2nd surgery. I started balling because of this. I know without them, life is almost unbearable. Every movement hurts. My doctors don’t believe me. I have tried all the antidepressants and lupron. Any insight would be awesome. I feel so lost right now! I’ve told them many times that I would love to be off of the pain killers but AFTER my surgery to see if the pain decreases any. I have done everything they ask of me and I ask one thing and it doesn’t seem to matter. Has anyone found anything other than pain killers that has helped with this horrible pain that we suffer from??

  17. Teenage says:

    I was diagnosed with endometriosis last year (age 16), after going through a colonoscopy and other tests. My doctor gave me BC (for pain, but didn’t help much). I get very bad pain and basically live on pain pills for a good portion of the time.

  18. Jacintha says:

    I am 30years and I have had this pain since age 11 when I started my period. I was told it will go after birth. I got married and had a baby at age 24, but then the pain has increased. Am still suffering with excruciating pain and can’t seem to find a painkiller to ease the pain. I have fibroid n have even inserted mirena because the bleeding wouldn’t stop. When I have my period, it last for minimum of 2 weeks and a maximum of 1 month. I am never free, I always carry extra panties and pads everywhere I go. I can’t even get intimate with my partner. Am now diet and I hope it helps. I also believe a lot of women in Africa are having this problem and needs help.

  19. tabitha says:

    its so good to see i am not alone its so hard to talk to people that don’t know what i am going through i am 21 one and next month i have to have female parts taken out because my pain has go real bad and i cant take it anymore. i had 2 surgeries to remove and it comes right back i am so at lost i wanted more kids i have one know but looks like i will have to adopt if i want more. how do you deal with knowing you cant have kids my pain stays know and don’t every go away and i never get out unless its to doctors or to get food for house i cant wear blue jeans anymore i want to be normal again

  20. Donna says:

    It is so good to her other people stories, and to know I am not crazy. I having these exact same problems right now. I never knew this disease existed until earlier this year. I am SO TIRED of going to doctor after doctor and having all these test done that show up NOTHING. I have had ct scans, ultrasounds, pelvic exams, colonoscopy, endoscopy, tubes and tubes of blood and constantly given urine samples. Doctor’s seem clueless when it comes to endometrios. The first thing they want to do is birth control. But forgive me if I’m wrong that is just covering up the problem and not solving the problem. It is so disappointing and frustrating when all the test show nothing and the only thing you can say is , I’m in severe pain. I have even started to question myself, wondering if it was psycological, but then a pain hits me and I say to myself there is no way I can imagine this. I pray that doctor’s and women gain more knowledge of this horrible disease. I am so thankful for this website and learning that I am not alone, and I pray for anyone going through this.

  21. Nicole says:

    Its an amazing feeling to know there are others that feel the way I do and i’m not crazy i wish people who don’t have endo could understand the pain it causes and that its not being made up we shouldn’t have to have surgery to prove it’s there to others. i know what your all going through and its horrible i’m 32 and a mother of 2 I’ve had my uterus and right ovary removed but the endo is back and its so hard to live on pain pills!!

  22. Noella Christka says:

    I’m glad i am not the only one. I am 23 years old and I’m suffering from pain every other day. Every doctor that i have been to so far or not taking me serious, they say oh just take the birth control and when i do it don’t work i have my period for 3 months at a time, so i stop. Just hearing you ladies story makes me feel a lot better and because of that i am going to take some action and see an OB/GYN and ask for the surgery for a better result. I will continue to keep you ladies in my prayer please do the same.

  23. nakia says:

    I’ve been having pain for the last 2 years and just found out i had endometriosis last month… i knew something was wrong when i started bleeding a lot and had pain every time me n my boyfriend had sex… i went to the doc and they said he was just hitting my cervix and i would b fine… so as time went by the pain has got worst my menstrual has to.. i have never had a something that hurts so bad.. i have mood swings all the time.. if we ride over bumps it makes it hurt, i have pain when i sit down, days when i have morning sickness like today.. we been trying to have a baby but i guess because of this endometriosis i’m not gonna have one and that hurts so bad.. my new doc said if i want one i need to do it now for me not to wait any longer cause i may need to go ahead and have a hysterectomy done… i been trying for years now never been on birth control my life still no pregnancy my son 9 and ask why he don’t had a brother or sister… i wouldn’t wish this pain on anyone

  24. Melissa says:

    this story is sooo true I’ve suffered with endo for years now and sometimes don’t know what to do…. sometimes people think I’m telling a lie about my pain.. nice to read this makes me feel better …

  25. sharlene says:

    I am glad to know this pain is not just in my mind. One. ? I have it, is it passed from mother to daughter? I wish I knew about this when my daughter complained when she was younger. Now she is pregnant with her second child and the cyst is inside the womb not sure cancer is there as of yet.

  26. Caren says:

    I have been reading posts and realize us ladies need to continue the fight. I have had the disease since I was 18, now I’m 44. I have 2 miracle babies (now 12 & 14), at least 8 surgeries for endo, ovarian cysts and adhesions, with a total Hyst. That was supposed to cure it, but not so for me. I don’t miss passing out due to severe pain during my cycle, that is for sure. The disease is relentless!! I hated the Lupron, Hormone shots ect., but they did help decrease the pain. I am currently on large doses of Megace and awaiting surgery again if no improvement. I have a great Dr. who totally understands and is very proactive. Feeling crazy and having a hard time with life has been problematic for & 20yrs. I don’t like the antidepressant, anti-anxiety and pain medications as well as the hormone therapy, but the meds do allow me to function with most daily activities, work and enjoy my kids. My family is great but I sure miss feeling intimate with my husband due to the Megace. We all need to keep fighting for a better life with endo for those who come behind us. I’m worried about my daughter having the disease of PCOS and ENDO, Dr. said it is a 50/50 chance, will have to wait and see. Will pray for us all.

  27. patricia says:

    I am 30 yrs old and was told I had endo when I was 19. There are several women in my family that have it. I have two kid and it was not easy trying get pregnant. I only have one ovary left and the doc said it should go away now. I will have to have surgery again so they can remove the endo that has came back. I have been on lupron, and birth control to try to help get rid of it and nothing works. I have a little girl and I hope she never has to go through it.

  28. tanyagreek says:

    I’m lucky, blessed to have 2 sons. i have endo since i was 22. im 34 now every year becomes more painful and streesful i quit going to doctors im just tired of not getting an answer. to help i did laparoscopy and had lupron injection, Is felt at time=es i was having multiple breakdowns im always tired i go thru mood swings about 20 days out of the month. the worst time is about 7 days before my cycle starts. i easily get upset at my children put on a pretend smile in front of my husband act as if every thing is fine don’t even complain about the pain im going thru be cause no one really understands i don’t really understand. ive been on birth control for over 6 years now it got to the point that if i don’t have it in my system for 3 to 5 days because im on nuva ring and my insurance will not cover the med every 21 days like needed its every 28 i go through menstrual attacks feels worse than labor did because you no there will be an end to labor pain i get stressed and paranoid when i don’t have the birth control at my finger tips. Vicoden helps a little but im not interested in becoming dependent on that type of drug. my doctor i had also put me on zanax for the irritability i am going through than they wanted to try depression pills. give me a break. im not trying to become a drug addict i just want some help to what can really be done ive read a lot of your stories and im in tears because i know how true your symptoms and pain really is i wanned a little girl so badly endo caused me to have a miscarriage after 7 weeks it was devastating to me i hope and pray we will get the proper help we all need your in my prayers ladies

  29. Danielle says:

    I am 23 years old. I was having horrible pelvic and right side pain for a good 7-9 months. When I was younger I NEVER had period cramps and I never had pain in my pelvic…nor during sex. So when I started getting cramps every month, gaining over 40lbs (not changing my diet and working out), and then having horrible pain during sex, I knew something was wrong. I went to my Dr’s right off. They tested me for Appendicitis. Of course it was negative. Then they told me it was just a flu. I was in and out of the ER monthly puking and having horrible pelvic pain. Finally I said enough was enough and told them to send me to an OBGYN. They did, the OBGYN wanted me to be treated for the disease before knowing for sure if I had it. However I did not feel comfortable with that…so I asked to do surgery first instead. So yesterday I had my surgery done. I’m in horrible pain but only from the air bubbles in my body. The incisions spots rarely hurt. All the air they pumped in my stomach to look around is very painful. They did find the disease, so they diagnosed me with endometriosis. I am hoping once the 6 months treatment is over with I will be as good as new. :) HOPING! I pray for anyone else out there going through this debilitating disease that you find a good treatment and get help. Good luck peoples!

  30. mom of 2 says:

    This disease is debilitating and painful. I suffered for years- and just found out in December (while having a cyst removed) I was stage 4!! I had a complete hysterectomy in April- and hoping to get my life back- especially with my girls!!! There needs to be more awareness about this disease- I never heard of it, til I got diagnosed…. Too many women out there with have it and don`t even know- I was one of them….I wish these doctors would get more into the study of endometriosis…..

  31. connie says:

    I too had a hysterectomy leaving a right ovary five years ago. I just had surgery to remove it. I had endometriosis when he went in, I had a cyst also laying on the right ovary. So, he removed it as I had been living with it for so long and was not knowing, also ladies, what was going on.

    I am 48 but this happened 5 years ago and the Dr. brushed it off and the pain is terrible. My heart goes out to each and everyone of you. I am still healing and tired of being lied to for years. And yes, Dr’s think you are crazy. I really feel for all of us.

  32. leatrice says:

    I was diagnosed with endo in 2001, I am now 34, I’ve had 2 ectopic pregnancies, 1 hysterectomy , and I have a 4 year old and I’m still suffering, I’m in the process of getting a second opinion ,because it does effect your life…

  33. Taylor says:

    i am 20 years old i was diagnosed six years ago after countless ER visits- every test under the sun blood test mri cat scans no answers for two years. One day a woman called my mom and told her to bring me in- she has an answer. A nosy OBGYN was waiting at a nurse station the morning after i was admitted and scanned though my chart- violating HIPPA laws and risking her medical license. i am so thankful she was interested- but the comfort of KNOWING what is wrong was short lived. about two minutes to be exact. until she told me there is no cure and the longer i wait to have kids- the more likely it is i will not conceive.
    many people did no believe i was experiencing real pain- no one understand unless you have it. i look normal all month long until i have my period then i look pregnant and can feel my uterus shredding layer by layer inside and out.
    i am finally being proactive- i want REAL answers i want REAL results, im tired of ‘take birth control’ or ‘exercise’ or take some motrin you’ll be fine. that’s not an answer.
    i live in So Cal now- 4 hours from the OB who diagnosed me.

  34. Aimee says:

    I was diagnosed with endo 3 weeks ago, I was in hospital for 5 days before I was sent for my operatiom when they discovered I had endo, I was treated there and then, and had the patches removed, however I am still in a lot of pain with my stomach and pelvis. I am already on the pill and have been since I was 15, I’m now 20! When I was in hospital they told me it was endo and left it at that, I had to idea what it was or how it was caused. I have now been informed in runs in blood lines and discovered my nan suffered with it. Due to the pain I saw my gp who gave me more info and discussed that I may have to plan having a family earlier then I wanted. So now I’m faced with the decision of starting a family now! I’m only 20 and stuffing in metal ways as well, it’s more then just physical pain in mentally challenging too. I’d never heard of endo till I was diagnosed. I hope I will get more answers and more info as I am now an outpatient at the hospital. I feel for any woman who has this.

  35. Amanda says:

    My name is Amanda, I am barely 20 years old and have been suffering with chronic pelvic pain for the 2-3 years. I have been to different Doctors, hospitals, E.R.s etc. For the all the times of going I was getting frustrated and hopeless, I was being told I don’t know, find a new doctor, here’s antibiotics and pain relievers, that’s all we can do. Finally, I went to a personal OBGYN and was told I might have Endo. This was the first time I heard of the disease. I recently this week returned to the ER and told them of this experience. They confirmed from my past records and my obgyns exp. and thoughts, I have endometriosis. The pain is awful, and during menstrual cycles its excruciating. I have just started a new job and have already missed three days. My boyfriend was looking for home remedies and came across a website that caught his attention, its an all natural pill I like the knowledge on this page. we are going to give it a shot, its cheaper than the surgery and I’m without insurance. I am very eager to get rid of the pain. Its well worth a shot. Or am I just desperate

  36. michelle says:

    There are three great articles on the website that discuss endometriosis after a hysterectomy:

    Here is a quick link to see the articles:
    http://www.vitalhealth.com/patient-physician-resources/dr-cook/recurrent-endometriosis-after-hysterectomy.php
    http://www.vitalhealth.com/patient-physician-resources/ask-dr-cook-archives.php

  37. deisi says:

    I have had endo since i was 12 yrs old. I would get really bad menstrual cramps that i would have to miss 3 days of school… now I’m 23 yrs old and thank god that let me have a wonderful baby girl 2yrs ago….. but I’m afraid that i wont be able to get pregnant again. I’m tired of the pain its become an every day thing and i cant take it…. now i have to miss going to work and i hate that… i don’t want to be taking birth control anymore i want real answers, not let’s see what other test I could run on you. Some test are really painful. And i also want my sex life back…… i don’t know what to do any more.

  38. Glorida says:

    I am 34 years old and had a hysto 6 years ago because of large extremely painful cysts that I was told may have been ovarian cancer and endo. Now I have been having constant abdominal pain, back pain, frequent urination, severe headaches and always tired for 2 years. They say I can’t have endo cause I had a total hysto but I read that I can still have it. Very confused and upset. Can anyone help?

  39. Jessica says:

    I am 24 years old and I found out last year that I have endometriosis. I had such bad “cramps” in middle school and high school but just thought that was what they were suppose to be like. After having surgery last year to take out scar tissue I felt so much better for a couple months then it all started again. When I go to the doctor and explain what I am feeling they always jump to the answer of birth control. Yeah birth control helps a little bit but I am hoping that one day I can have children and start the family me and my husband have always wanted. I’m so fed up with not knowing what day is going to be a good day and which is going to be a bad one. Not to mention that I am so worried that children will not be in my future. I only have about 3 periods a year which I thought was awesome when I was younger but now I’m just hoping that we can get preg. when we want. Any one else have problems with thier doctors only wanting to do a quick fix and put them on birth control? And if so what did you do to get a different answer or what do you think I should do?

  40. katrice says:

    I know how u feel lost an 8 yr relationship and had to undergo several yrs of its this its that from so many doctors I’m a cmt so I know crap when I hear it had hysterectomy Aug 31 11 took every thing so y am I feeling those same aches and pains on top of that menopause doctor just wanna feel me up with meds that don’t help so I am doing research and getting better quality insurance then I’m going to an endometriosis specialist doc. from what I hear they can get it done so I will try it.

  41. tanya says:

    I was diagnosed with endometriosis and ovarian cysts when i was 19. I am 29 now. I’m just wondering as i sit here in pain when is it going to end. I’m tired of feeling tired and moody all the time. mainly its just during my cycle. but it seems like i only have one good week out of a month. It would be nice to actually talk with someone that has been diagnosed with the same problem i have. feel free to email me. thanks for listening

  42. Crystal says:

    Back in middle and high school I missed 2-3 days of school every month from the painful periods. My family and I never thought anything about it because we new the horrific periods ran in the family and no one was ever diagnosed because theirs was almost 30 years ago. Once I was put on birth control the pain and heaviness eased so a normal life was manageable. I am now in my late 20’s facing this pain again and do not know what to do. I am having all kinds of test run. I am having a second ultra sound and an x-ray done to see what the doctor can find out. Did anyone else have this painful in the early teenage life? Is this what I could possibly have? I do not know how much longer I can handle this pain in my pelvic and abdominal area. It is ruining my sex life with my husband.

  43. Amy says:

    I think that it is so sad to hear of so many women, like myself, who have suffered with endo and who never seem to be taken seriously. It makes me so angry! I know that I was also treated with the condescending comments… from gynecologists! When it seems to be a fairly common condition that plague women, why is it so out-of-the-question to consider it? I had 2 surgeries last year and hoped to get pregnant before having to deal with the endo again. I am 44 years young and childless. I have been so sad dealing with the reality that I may never have a child of my own. I watch my friends with their children and hear of others who seem to just sit next to their partners and get pregnant! I didn’t want to do the lupron injections at my age. I was fearful of the bone loss and not being able to rebuild it before “true” menopause would happen. I am in so much pain at times, but since my surgery, the pain isn’t as often. The endo is slowly coming back so I know it is just a matter of time before I am incapacitated again.

  44. Lazina says:

    My 16 year daughter has severe menstrual cramps and pain during her cycle time. She misses the 1st & 2nd day of school if it occurs during the school week. She gets premenstrual symptom before her period such as bloating, fatigue, and moodiness. During her period she is in severe pain and takes Motrin &; Naproxen to ease pain symptoms. During her cycle she recently began vomiting with no ability to stand or sit straight up. She currently was prescribed birth control pills to stop her periods from flowing monthly. She has not been diagnosed with endometriosis, but after reading the information provided on what is endometriosis? The symptoms described matches what she experiences every month. Her pain began in middle school and gets worse each year. I think I should have her properly diagnosed through an ultrasound. She’s still a virgin and the ultrasound procedure is very invasive. So I’m not sure if I should pursue diagnosis at this time. If there’s no cure for the condition at this time other than prescribing birth control to stop her periods.

  45. Pat says:

    I am 38 years old. I got married October 23, 2010 and discovered that I have a cyst the size of an orange on my left ovary in April 2011. I have been dumbfounded at the lack of effective care for endo…I had surgery, in an attempt to remove the cyst in August 2011, and the doctor discovered that he could not remove the cyst because my left ovary and my intestine that pushes my bowels through my system have meshed together. This is called an adhesion and cannot be removed. My husband and I want children and we were so happy and excited to get married and start our family. Now, our worlds have been shaken to the core. I fell into a deep depression because I never anticipated having my fertility being threatened, this caused my husband to get depressed because he takes it so personally that his wife is so sad. I didn’t what was happening to me, depression, consistent UTI’s, Yeast infections, fungal infections on my nails and skin….I have been to so many doctor’s and the ER rooms that after a year in a half of chasing answers, I finally understand. I understand that there is no real answer, only guesses. It makes me so sad and mad that every resolution pertaining to the female body has something to do with “taking something out, cutting something off” injecting, implanting us with so much plastic that we don’t even look like ourselves. I didn’t recognize this violence toward our bodies until I was looked at by doctor’s like a crazy woman…..hell ya, I am crazy and you would be too if you had to deal with that much pain with no relief. It drove me mad. My poor husband is a deer in headlights and has no idea what to do to support me. He is in shock……I want to treat and control my dis-ease, I want to get pregnant and I want to create the family my husband and I want to have……
    I am glad to realize that I am not crazy….well, maybe a little, and I am okay with that. I feel like I have earned the privilege of being a little mad….. I don’t have any more energy to be, do and have anything else…….

  46. Ashley says:

    I’m 23 years old and couldn’t figure out why I was having so much pain constantly. it seemed as if I was a complete mystery to every one. After E.R. visits and enough of the pain I went to my gynecologist. Even then I was left empty handed. I had a cyst removed years before and I had mentioned the endometriosis. Although I may not have a degree in medical but I know when something is wrong. but yet he says it sounds like it but he would of seen it started during my first operation. I still believe it’s the problem. Having the pain with ever day living isn’t me. I still have not been diagnosed or know what is going on. The fact that me n my fiance want to start a family and I cant seem to get pregnant has me worried. answers is all women want and yet people think its all in our minds and sent on our way. if only some people could experience what we go through.

  47. Bethany says:

    I am truly amazed to read all of these stories. I was diagnosed with endometriosis 3 years ago. However, the hell that I had to endure to get to that diagnosis was another matter entirely. I have always had painful periods. But 4 years ago, the pain became so intense that it scared me. Needless to say, countless visits to the gynecologist, gastroenterologist and the emergency room left me with no answers. They put me through every test and scan under the sun and each time told me that there was nothing wrong with me. I became severely depressed and frustrated due to the lack of concern from doctors. It became next to impossible to get pain meds. The doctors acted as if I was a drug addict just looking to get high. After begging and pleading with my gynecologist, she decided to perform Laparoscopic Surgery and discovered the endometriosis had wrapped itself over my ovaries and bowels. She could not believe how I had even been functioning for all these months after seeing the severity of the endometriosis. The pain did subside a bit for a few years but I am currently experiencing extreme pain once again. Thankfully, I know what is causing it and I have asked my gynecologist to perform laparoscopic surgery again. I tried to get a hysterectomy but they refused due to my young age. I hope that some day doctors will understand this disease so that all of us that are suffering from it can get proper care.

  48. ashley says:

    I’ve been in tears all day I’m so scarred. I’ve been diagnosed with endo for almost ten years now. I’m now 23 I have no kids and at least want one before they pull it out.it been every hard for me i have no family no parents a boyfriend that doesn’t care what I’M going through. I’ve been on my own since 17 I have my own place and have been trying to finish college but the bleeding and the pain has stopped that. In middle and high school I missed so many days because of the pain and bleeding and every one thought i was faking it including my doctor back then all the blood test and ultrasounds they need on me and every thing turned out normal and i started to think i was bleeding to death. When I was 18 I got diagnosed with endo and they put in surgery right away. but the endo came back not even 2 years later and its 10x as bad. I’ve had two laporoscopy surgeries the second one back in Dec. a month later I’m having worse bleeding and in pain every day and seems like its getting worse each day!. I have severe back pain, I vomit 3 to 4 times a week some times more some times less, most days cant move out of bed because it hurts so bad, severe headaches, severe bleeding, severe pain, dizzy when standing or walking, mood swings, ect.. I’ve been on the depo shot, pills, patch and nothing is working and i cant find a good doctor to help me. it scares me even more reading every ones stories and knowing there is no cure. if any one can give me advice or a good doctor to go to it would be wonderful .

  49. Claire in CA, USA says:

    I am the mom of a 17yo with endo. She was diagnosed 2-1/2 years ago. She suffers 24/7, and we have tried lots of different things, but so far, nothing has helped. We go to a pain management clinic, and she is on Vicodin everyday. She was homeschooled, but between the pain and the Vicodin, she can no longer study. This would be the year she graduates from high school.

    For those of you who asked for help, I would direct you to The Endometriosis Association http://www.endometriosisassn.org/, and Endo Resolved http://www.endo-resolved.com/index.html. Both of these organizations have helped me to help my daughter.

    We also pray a lot, and I think that helps my beautiful girl’s state of mind. She has lovely friends who understand her pain (and fatigue, etc.), so she is very blessed.

    My heart breaks reading all your stories. I am so sorry that this stupid disease exists and effects so many of you.

  50. Cindy says:

    This all brings back so many memories, I am 31 years old with 3 kids. Had a hysto about 4 years ago, after countless procedures and pain meds given to me.. (who can take those with three kids) finally had the hysto, found endometriosis under my uterus. Felt awesome till last year about this same time.. In the past month I have felt like its back.. So tired, my legs have so much pressure they hurt so bad. I am a runner and here lately I can not run, I am so tired. When its my time of the month, stomach is upset, can sleep for days, and can’t even explain how bad I feel.. Makes me mad because I don’t have my periods anymore..All this was suppose to be cured..Can it be back?? I know how it feels to keep going to dr and feel like you are crazy.

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