Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Endometriosis has stolen my 30's

by Anonymous

Endometriosis and how it has affected my life.
I always had a strange cycle. I did not start my period until I was 17. My mom took me in, because she was so worried! Finally I started with a vengeance. I would bleed 15 days in a row so heavy!! I had to wear the heavy duty pads, and I could not even wear a tampon if I tried.

I had to have a hymenectomy in my 20's before marriage too. But around 20, I got on the birth control pill, and things seemed to be okay. Periods were lighter etc. Then shortly after marriage I became pregnant very easily, and the same with my next two children. I never had one issue with fertility, and the minute I got off the pill I was pregnant it seemed. That's the good news and the saving grace in this story.

After my third child was born at only age 30, I began experiencing a decline with my cycles. And my abdomen was swollen. For years prior to this I had urinary issues that no one understood either. My female urologist/gynecologist recommended after a laparoscopy scar tissue surgery that I have a partial hysterectomy, as things had really worsened with pain and general health.

My uterus was 8 times normal size, and I did indeed have extensive endometriosis (adenomyosis). I felt an immediate relief, and I do believe this bought me a few years.

Until I began having a terrible pain in my lower right side every month. I could not button pants or anything as it just felt terrible. I also felt like jelly, and super tired certain days of the month. I mentioned this to my doctor who said 'oh yes, you had a small hernia show up on a cat scan.'

So I was referred to a general surgeon thinking this was the pain that was also going down my leg. And the surgeon said no, this is not a hernia, it is a lump. And thus a bizarre journey started

I went through a very uncomfortable and long biopsy on the tumor, and I was awake for the whole thing. It seemed to be difficult for them to get a sample as the tumor was in my adominal wall muscles. The radiologist thought it would be tough muscle, but I had diagnosed myself online with an endometrioma. A few days later I get a call.

The general surgeon seemed concerned and said that the pathologists (a team) had determined that this was a desmoid tumor. We were in total shock to be told I had a abdominal sarcoma after all this. I immediately contacted friends who connected me with a specialist for these tumors. Given the biopsy result at the same medical institution, this surgeon recommended removal of the tumor.

It was a grueling surgery to say the least lasting hours and requiring extensive plastic surgery to reconstruct my stomach after the abdominal resection. Due to the nature of those tumors, very wide margins had to be taken. The recovery was very tough, and I had five jackson pratt drains for over a month! I looked like an octopus alien my kids said!-- It was a very hard time.

Then a couple of weeks after my surgery, the pathology results reveal it was an endometrioma all along! I likely did not need that extensive amount of surgery, although the margins still showed "close but clear" It was bizarre! Again I think some time was bought, and I felt better for a short period.

Now in a new city and state a year later, I am plagued with new symptoms. Rectal and vaginal bleeding and faecal matter in both areas as well as severe lower back pain. My GP thought I might have a fistula which I had been tested for before (because I had to have my sphincter muscle repaired a few yrs ago) due to a 4th degree episiotomy. And no fistula was found then.

But I went to both a gyno specialist and a colorectal doctor. Both of these doctors seemed to know instantly that I was suffering from rectal endometriosis, and that is where the bleeding and pain was coming from, not a fistula.

Once again, I am flummoxed with the whole bizarre endometriosis road. I went to two very good gynos, and they both recommend the eventual removal of ovaries and cervix. I just do not know what to do -- I feel Endometriosis has stolen my 30's as now I feel it is everywhere. It has just pulled me down and slowed me down for years:(- I wish I had some guarantee that it could be removed from my body and life, but I do not believe that.

I am fearful of going into full menopause and taking HRT too and would love to talk to people that have, especially in their 30's like me. I am fearful that with the bowel and rectum already affected that likely there is not a lot they can do, so is more abdominal surgery the answer after everything?

Thank you for listening. My heart truly goes out to anyone suffering from this disease especially those with infertility. I am so thankful I was able to conceive and have children as this is just such a mystery - it is so vague and strange and horrible. I am so "over" it but just want to know what to do next. As I just see this getting worse before better.

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