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
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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