Diagnosis took 3 years just had hysterectomy

by Linda Flynn
(Kingston Ma)

I had pain building for years, periods getting worse, totally felt horrible when having my periods. My symptoms of endometriosis included heaving bleeding, pelvic pain, pain during intercourse and doctors found a cyst on left ovary.

My cyst was monitored for a while, then it started to change. It got larger, then filled with a thick fluid. So I was sent into Boston to a world known ultrasound specialist.

She was great and said it was an endometrioma, so they watched for a few years. It stayed about the same.

A couple of years went by, it got larger, periods got heavier, more pain, so I was sent back to Boston for another ultrasound. There she found more endometrioma's & now attached to my bowel.

I was nervous now because I have always had GI problems but I wasn't sure how I wanted to treat it. I am 42 so hormones, birth control or hysterectomy?

Symptoms would not subside until menopause so 10 years or so to wait? So again back to Boston to Brigham & women's minimally invasive gynaecology, loved my doctor and he made me feel so at ease.

I just had my hysterectomy April 6th. Done laparoscopy and doing great. Having a few minor issues but I had stage 4 endometriosis and it was everywhere - bowel, uterus, both ovaries and tubes I was a big mess.

I also had adenomyosis. He was able to save right ovary after he removed cyst, took out everything else. Only out of work 3 weeks and on a good road to recovery. Glad I did it now before having to deal with bowel resections or worse cancer.

I can definitely relate to your story (more so than any i've read)- I have written here as well and also had adenomyosis in my uterus as my uterus was globular (8 times normal size). I had a partial hysterectomy 3 years ago at age 34, and I naively thought that would take care of the problem.

It did buy me some time, but my ovaries continued to feed the disease. Because endometriosis is an ovarian disease.

I also had an endometrioma maybe more -- the presence of them indicate very advanced endo) but the one that gave me so much pain was created when endometrosis cells transferred during a c-section with my third child into my abdominal wall at age 30.

The saving grace was I was able to have children before the horror of this disease took hold. I always had crazily heavy periods and went on BC at a young age due to that and very irregular cycles.

I went through a huge mis-diagnosis and had a huge surgery for the tumor (one of the best specialists in the country Johns Hopkins trained/sloan-kettering), because the pathologists determined it was a desmoid tumor (cancer-a sarcoma) that grows slowly for years. It was so painful though, because it had very little room to grow in my abdominal muscles.

After a painful and traumatic biopsy (where I was fully awake) and HUGE surgery (due to wide margins) with months long recovery, including plastic reconstruction (still not sure I ever will recover), I found out it was an endometrioma all along (such an emotional landslide) at my post-op appt. I guess I was relieved but also of course resentful. But I was ready to move on, and that was one year ago.

A year later, my endometriosis is back with a vengeance now :(-- it is now recto-vaginal ( fusing the area together) plus attached to everything it can grab like yours, causing bleeding even 3 yrs after the hysterectomy. I was not pleased and did not realize this could even happen!

I was told just recently by two (one gyne-oncologist and gynaecologist specialist)that having my ovaries still means the endometriosis is getting fed and is continuing to grow (and as you said a cancer risk).

So now I am facing the possibility (recommended) to have my ovaries and cervix removed. The thought of menopause at 37 and HRT freaks me out, so I am holding off for as long as I can. And the thought of more surgery (I've had 7 since 2004 all indirectly or directly related to this and female issues) is really making me step back and wait.

Plus I am reading this is not a cure either
My huge abdominal resection was last year, so I want to be at least 2 yrs out from that before having another abdominal surgery. There is so much to consider! -- And like you, I am so fearful of a bowel resection!

Healing from a hysterectomy is not easy (let others do for you and don't push too hard) -- With any luck, this will be the end of your endometriosis journey, and you will feel much better. All the best to you!-- Kentucky

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