These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
Diverticulitis / Possible Ovarian Cancer lead to Endometriosis Diagnosis
I had pain in my left side all afternoon at work that felt like bad gas pain. I went to bed early and felt fine the next day. Two days later I awoke from a deep sleep in pain.
I had a bowel movement that was painful (who has a b.m. at 2:30 in the morning? I do) and felt achy afterwards but mostly relieved. I remembered that I ate some watermelon with some really tiny seeds and thought that I had diverticulitis.
My PCP ordered a CT and I had an adnexal lesion on the left side. It's a simple cyst they said. An ultrasound a week later actually showed two cysts. One cyst ruptured during my next cycle. The other one continued to grow over the course of the next four months.
I had constant pain - radiating pain into my rectum, painful bowel movements, pain even radiating into my ribcage. A subsequent ultrasound was done and showed the cyst measuring almost four inches in diameter. The Dr. ordered a CA 125 lab which was not elevated.
The reading radiologist of the last Ultrasound compared it to the CT done months prior and felt that it was a complex cyst suspicious for a low grade tumor so I was referred to a gynaecological Oncologist.
The cyst ruptured two weeks before my scheduled hysterectomy. I debated about not getting the hysterectomy but the last two menstrual cycles that I'd had were extremely painful so I went ahead with the surgery.
I went in expecting robotic laparoscopic surgery with small incisions. I awoke with small incisions AND a large incision. My cul-de-sac was obliterated. I had adenomyosis, I had an enlarged lymph node in the right pelvis that was removed to be tested for cancer. My uterus was attached to my sigmoid colon with adhesions.
The surgeon told me I was stage iv endo with frozen pelvis which is why he had to do large incision to get to all the adhesions. I am now 4 weeks post modified radical hysterectomy.
I cannot speak to long term endo problems since I am early post hysterectomy. I never knew I had endometriosis. No one ever suggested that I might have endo. I've always had painful periods - but who doesn't? I do not have ovarian cancer. I was high risk for ovarian cancer because of family history and I never had children.
I was unable to take birth control pills because it elevated my blood pressure. I am 47 years old. I still have pain in my colon and constipation makes it so much worse. I'm sure some of the pain is from the surgery but I suspect that the endo penetrated my sigmoid colon to some extent.
If I had been referred to a gastroenterologist I don't think I would have been diagnosed as soon as I had been, even if the hysterectomy seemed extreme. I think women need to investigate bowel pain as endo - I personally think endo is more common than irritable bowel.
My advice to other women is to insist on an MRI for suspected endometriosis and don't trust your gastroenterologist for all the answers.
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