Endometriosis story

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

Distressed by symptoms

by Paulette
(Chester VA)

I started having a stabbing, aching pain about 7 years ago. It would happen during my cycle and then again about two weeks later. I ended up going to the ER for it. They said I had a cyst on my ovary.

I made a follow up with my GYN. She did a sonogram and said the cyst was very small and that it would most likely shrink. I would go every 3-4 months for about two years because of the pain. So she then said I think you have IBS. Ok great she told me something was wrong, I wasn't going crazy, the pain was real.

And now I could try to do something about it. I tried, nothing worked. I went back I told her I think she was wrong. She insisted that it was IBS and she told me to see a gastro doctor.

I can admit I never went. I also never went back to her. I started to just see my primary care doctor for my pap every year, I didn't even complain about the pain any more. I thought it was part of my cycle.

I would be in so much pain I would lie down on the cold tile bathroom floor. It was the only thing to keep me from passing out from the pain. I would be sweating and nauseated.

About 2 yrs ago it stopped, I don't no how or why but all the symptoms just stopped. Then back in May I was really sick at work, for about a week my cycle was on but it was not normal. I had been bleeding for 5 days straight and the pain was back. (Although I used to have so much pain my actual bleed days was only 2).

Again I went to the ER but this time they found a cyst the size of a soft ball on my left ovary. I had already made an appointment to see a new GYN earlier that week, so they just told me to follow up with him.

Hospital Tuesday night, GYN Thursday, surgery Friday. Yes I thought everything would be fine after this. Oh boy, was I in for a rude awakening.

When I came to from the surgery the doctor explained what he had done, but he had also discovered that I had endometriosis. He said had he had my permission he would have done a hysterectomy right then.

I followed up with him a few days later and again a few weeks later. I have stage 4 endometriosis on my left side, it has taken over my ovary, my tube, my bowel, but there is nothing wrong on my right side.

I thought what I had before was painful. No way, this pain would snap me out of sleep. I could not walk at work. No amount of medication would help.

Its only been 4 months and my doctor has retired. I have a second opinion today, I don't know what to do. I still want more children but the pain that I go through now has me very conflicted. I don't want to live like this, it's affecting my quality of life I am very scared.

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