I am very grateful for this website...it is a wealth of information and has helped put things in perspective for me. I was tentatively diagnosed with endometriosis in June of 2009. I always had long, irregular periods but my cramps seemed run-of-the-mill until my early 20s. I started to noticed extremely severe pains immediately at the onset of my period...I would be on the floor with sudden pain, go into the bathroom and find my period had started.
I also began having severe migraines and dizziness, which I didn't think was related to my cramping, but later learned I am predisposed to migraines, but they are worsened by excess estrogen. I began to have constant dull aching in my lower abdomen and lower back. This was also coupled with frequent supposed UTIs. My doctor would treat me for the UTI, but the test would later come back negative. My urinary troubles became constant, until I was feeling the need to urinate more than twenty or thirty times in a day, with constant bladder discomfort and pain.
The breaking point was a sudden onset of severe right-sided flank aches coupled with nausea and blood in my urine. This sent me to the ER, where they checked me for kidney stones (because I have a history of stones). Nothing was found except a cyst on my ovary, and I was told to follow up with my urologist. After a complete exam and a cystoscopy where my bladder and ureters were examined with a scope, my urologist said everything was fine and encouraged me to find a new gynaecologist to rule out a gynaecological problem.
The two gynos I had already been to were either completely unhelpful or outright mean. One of them made me feel crazy, telling me my pain was normal and each symptom was insignificant...the urinary problem was that I ate too many acidic foods, and the lower back ache is just a muscular issue, and as for the cramps...I just needed to take several Advil and deal with it. So I returned to a gynaecologist I had visited as a teen, who I remembered had treated me very well. She was sceptical about my story at first, saying it didn't sound like classic endometriosis. Then she did an ultrasound. It showed a very large adenomyoma in the right front wall of my uterus, pressing against my bladder.
She said she had never seen anything like it in all her years of practice. She said adenomyosis is uncommon in a 26-year-old who has never had children. She also said it is likely I have endometriosis, but there is no way to know how much or how little without a laparoscopy. I started continuous BCP back in June, and it seemed to help a lot until recently, when the stabbing pains returned, this time in my left side. The terrible nausea and cramping in my bladder has returned with a vengeance and I'm starting to think it's time for that laparoscopy. I just want to know for certain what is happening in there. I am so glad for the information here. Thank you to everyone who shared their story.
I am now 36 years old. 5 years ago my second child was born by caesarean section and from there onwards I started suffering from Endometriosis. After the operation I could not recover completely from the aches and had my routine check up after the birth. I told the doctor that I feel a lump on the caesarean stitches and I was told that it is just a blood clot. After a year I went to another doctor and told me I have nothing maybe an inflammation and gave me drugs to cure it.
The pain remained the same during menstrual periods much harder but maybe only a week every month not in any discomfort. After 3 years in agony I went to another doctor. This time when he felt the lump on the stitches he told me that he was thinking I had endometriosis. Then he made me an appointment for surgery to remove the lump. Yes it is endometriosis. I was told that during the caesarean operation a cell was trapped in the stitches and formed endometriosis.
Now after surgery I am taking the pill as still suffering. I've been taking the pill for 4 months and the problem is still there. Now I have to go to the gynae again because I was given another solution, a course of 6 months injections. I take 2 boxes of painkillers each week as my family needs me, but the symptoms are making me depressed and my life is changing.
British Virgin Islands
My problem went undiagnosed for over 5 years by doctors. I had a case of recurring urinary tract infections, which was unexplained. It was my own pushing which lead me to a retired doctor who suggested that it might be endometriosis. Finally another obgyn confirmed that it might be and referred me to another doctor who specialises in this type of surgery. My endometriosis had invaded the left side of my outer uterus and a piece of my bowel was stuck to my uterus.
Doctor removed as much as he can removed and now I have to take 3 lupron injections for the next 3 months and I should be fine. It has been a long, painful and costly journey to get where I am now and I look forward to feeling well again in the 4-6 weeks.
Pain...was my biggest issue. Every since I was young, let's say 13, I had horrible problems with periods. Sometimes I ended up throwing up or getting sick. I ignored the pain hoping as I got older, it would get better.
I started dating (my current boyfriend) by the age of 15 and things were going okay. We made love a lot..and it never really hurt until one day..the agony was so bad I started to cry. It didn't stop there, adding to the distressing periods I also got urinary tract infections quiet often.
Frustrated, I went to doctors and they would say, "you're young, nothing is wrong just a little pelvic infection." So I dealt with it, feeling alone and scared of not knowing what was wrong with me.
I finally couldn't put up with this any more I went to a Women's Center (gyno.) and they did a number of test to determine what was wrong. The next step was a procedure to find out if it was Interstistial Cytisis(spelled wrong) and I passed the test, so that was ruled out. I felt alone, frustrated and at wits end. Finally my doctor decided I should get a Laparoscopy.
Endometriosis was what they found. I am upset because there is no cure, but I'm so happy to know what is wrong. Funny how it took the doctors so long to know what it really was. I am now 18 living with HPV, Endometriosis and don't forget my other health issues. My story is not unusual but when I was young my parents doubted anything was really wrong. If you believe there is something wrong with you health wise, then take care of it, at least while your young. Endometriosis is a common problem in women (40%) but is also a serious issue. Take care of yourself and visit your Gynaecologist often. :) and life goes on.
I was just diagnosed with endometriosis two weeks ago. They found out that I had this by a laparoscopy. I have had horrible cramps and bleeding for the past six years. They couldn't ever figure out why, I have been on many birth control pills and this winter they decided to put me on the depo provera shot. That was the worst decision of my whole life, and I will NEVER take that again. It changed my whole personality for the three months. I had anxiety and depression which were horrible. The doctor that gave me it didn’t think that I had endometriosis.
We were frustrated with her so we set out to find a different doctor that would help me get better. I met my doctor one day and without even looking at my stomach but just by hearing all of my history, she told me I needed to get a laparoscopy because she was sure that I had endometriosis. Sure enough I had it. She came in after surgery and told me that she couldn’t get all of it out.
It had glued my bowels together and there were two ways of getting rid of it. The first way was to cut it out which would mean another surgery or to take depo lupron. We then later figured out that the only way to get completely rid of it was to take the shot.
I am scared of getting this shot because it will send my body into menopause. This whole experience of taking the depo provera shot made me have to go on home-bound, now that I have had the surgery I am still on home-bound because I still have endometriosis in my stomach.
I hope taking the depo lupron will help me get back to my normal life. I want to be able to hang out with friends and be a normal teenager I'm SICK of this. If anyone knows how to cope with all of this please contact me, I'm having a hard time and I'm just trying to be a normal teenager again.
My endometriosis story does not have a very happy beginning..but the ending is in the making... I'm 38 years old. When I was 16, I would collapse from the symptoms of endometriosis. Often, I would get problems throughout my cycle - mainly in the middle, during ovulation. On several occasions, I went to my doctor and, on one occasion when I passed out on the way to the hospital.
All the doctors I saw thought I had bowel problems (constipation) or just simple 'period pain'? I can't tell you the number of times I was given enemas! It was until I was seen by one of the senior doctors at the hospital that it was suspected I had endometriosis. He referred me to a gynaecologist.
So I turned up for my gyno appointment. I was petrified as I was young and inexperienced. He read the referral, laughed at me and said that there was no way someone so young could have endometriosis. He sent me away. Twelve months later, after another particularly awful episode, I went back. He did a laparoscopy and discovered that not only did I have endometriosis but I had a very serious case of it (no kidding!).
I was put on Danazol, a hormonal drug, for six months, but apart from making me fat, it did not abate the endometriosis progress. So, at barely 18 years of age, I was booked in to have surgery. I was told that it was to remove the cysts, excess endometriosis material, etc. It wasn't until three months after the operation when I went back to see the doctor that we even spoke about how the operation could affect my future fertility. He was very condescending and proceeded to tell me that I had an 'ovarectemy' and tried to intimidate me by speaking to me in medical terms.
When I persisted in questioning him, it emerged that he had removed half of one ovary and a third of the other and that I would probably have difficulty conceiving later in life. I honestly felt violated. At no time before the operation had we discussed the removal of ovary tissue - or future fertility.
After that, I went on a merry-go-round of drugs - Prima Lutin, Prima Lutin + Danazol, various Pills. Eventually, I ended up on Diane 35 that helped control my cycle. I never went back to see a gynaecologist - I felt too betrayed. At 35, my husband and I decided that we wanted children. Three years later, we're still trying. I've been off any medication for close to 6 years and my endometriosis has returned with a vengeance. I now face the choice of either not having any children, or seeing a gyno and getting some help. I don't know what I'm going to do.
I need some answers! Please! I'm going crazy because I have been sick for 7 months. I think I have endometriosis and my GI doctor told me to go to my gyno and get it checked out. I have an appointment scheduled but until then I am going crazy. I am 18 years old and I started my period when I was 11. Ever since I've started I've been on birth control because I would have my period almost everyday of the month.
The birth control helped a lot but I would still go for about a week to 9 days straight. That eventually worked itself out too, now I go about 5 days. But I've always had horrible pains and everyone told me that was normal and that should fix itself later, well it didn't. I've used naproxin, I used to take 4 advil every four hours until it messed up my stomach and created erosions in my stomach. I usually miss some school, I don't want to move, and I usually get cramps a few days before, during, and a few days after my period. And I eat everything and crave everything, luckily I don't really gain any weight and work it off later.
I've tried going off birth control once within those 7 years but immediately my cycle got messed up. I usually get a lot of clots too which I always thought was weird. Then this past year I've gotten extremely sick. In October I had the flu, and then through november and part of december I had pneumonia, and then in the middle of december I got mono, and then in february ended up in the hospital for 3 days because I was vomiting every 5 minutes for 8 hours and had blood in my stool.
They performed an endoscopy and said I had erosions in my stomach probably from all the advil I took, now I can't take advil and tylenol doesn't fully help with cramps. I continuously got sick through march, had my tonsils out in april to help, started to get stomach pains in march, and only a few times in april and the pains were so bad I was sitting in class in tears, which is not me.
I joined the army in June and will now probably be discharged because my symptoms leave me bent over and unable to move for a few hours, so my GI doctor did a colonoscopy. He said that there is an odd sharp turn in my colon and my colon doesn't connect straight up to my rectum like it should, and he thinks it could be due to a possible adhesion of my intestines. He thinks I have IBS and gave me some meds for when I have the pains.
Oddly enough I haven't had any problems yet, but I'm sure they will hit soon. 2 days after my colonoscopy, just when I thought I knew what was wrong with me, I get another horrible upper respiratory infection. I'm going crazy, I want to know why my immune system is so shot, and if it is a possibility that I have endometriosis.
I can't go off birth control treatment, and I'm wondering is it IBS or is it endometriosis. I need answers.
I am going to attempt to keep this focused on the facts and details of my experiences, in hoping that they may help others...Diagnosed at 19, (but suffered since age 10), I had no idea what I was in store for. I have been prescribed every B.C pill out there, had 9 laser laparoscopy surgeries, including an appendectomy and a ovary being removed.
I opted for every and any treatment out there, with the hope of gaining even a little relief from the constant, excruciating, debilitating pain, bleeding heavily for 8 or 9 days every month, severe PMS, many, many cysts (including "chocolate" cysts rupturing), migraines, and every other possible symptom. This hope and struggle proved futile.
The treatments I tried had succeeded in giving me all the side effects, and none of the benefits- some of these effects continue to plague me long after the course of treatments were completed. I cannot stress enough, the complete degeneration a woman’s body can go through, when faced with a very severe case of Endometriosis, which doesn't respond to anything.
Life altering is not a sufficient word...11 years after diagnosis, I have learned much about this disease and the totality of destruction it has wreaked on not only my body, but my entire life. I could easily write 10 pages about the pain, the gruelling frustration, the awful side effects of drugs and treatments...
Instead, I'm opting for writing about strength, sheer determination, and the stubbornness that allows me to continue fighting with an effort no less than a dying animal. Now age 30, for the first time, we have been trying to conceive a child (so far have miscarried twice, early in the pregnancies)It has been more than a year, and while I applaud those who decide to go to great lengths to achieve pregnancy, I am not one of those elite women.
At this point in my life, my husband and I have decided that it is high time I begin to enjoy living. I am sure I will be having a hysterectomy before much longer. I truly think that one of the saddest things in my life has to be the fact that I can still remember what it was like before all of this happend; if I couldn't recall that time period, it wouldn't hurt quite as much.
When people mention to me that they don't know how I "put up" or "deal" with all of this, I simply reply, "Well, give me no choice, and I can just be a remarkable person!" To those starting out early in their struggle, the best advice I can give is to spare yourselves the "Why me's"...Why not you? Why not me? If you are blessed enough to have a remarkable family and support system, as I am - you will never be in this fight alone. And that, my friends, is just as powerful as the disease itself. God Bless, Melissa
Stories page 32