Endometriosis story

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

Completely mislead by my OBGYN

by Angela
(Poplar Bluff MO, USA)

This is my personal hysterectomy experience because of endometriosis.

I had one child at age 20. When he was 2, my husband and I tried to conceive again, why not? It was so easy the first time. After 6 years of trying, and excruciating heartbreak of no conception I was emotionally drained.

One day while at work I had severe pain in my lower pelvic area. By severe I mean more than I normally had, as I had always had pain before, during and after my monthly cycle. I saw my doctor and described the pain, and let her know it was more than normal. She immediately thought it could be my colon as it was too low for my ovaries.

She scheduled a scope to take a small look through my abdomen. When I awoke from the procedure, she informed me I had severe endometriosis. It was the worst case she had ever seen, growing all over my bladder, colon, abdominal walls, several other organs, and completely covering my uterus and ovaries.

She immediately told me I needed to have an emergency Hysterectomy. Within 2 months, I was having my surgery at age 29. I had no idea what I was getting myself into and was just following my doctor's orders. After all she is the one with the Medical degree not me.

After the surgery I began to question why it wasn't found sooner, like perhaps when I delivered my son by c-section. She told me I had not complained enough about the pain each month, that I must have built up a tolerance to the pain, so she couldn't properly diagnose me. I believed every word she said.

Right away after the surgery I felt so much better, I was more active, I began losing weight, I had no pain, and I had regular stools again. When I went for my check-up she told me all looked great, but started me on hormone therapy, stating I wouldn't want to go the next 30 years without it.

I did take hormone therapy about a year, until I noticed the same symptoms. Here are my symptoms. I have very loose stools, I have weight gain (regardless of diet or exercises) I have pain in my lower pelvic area, I still have hair loss. I continued on the hormone therapy for a year. Thinking the whole time, my doctor must know what is best.

After a year of the same, I finally went to my general doctor. I told her of my symptoms thinking surely I'm not crazy. She immediately told me to stop Hormone therapy, as in most cases of endometriosis it can cause it to return. I am mortified. I feel like, what good did anything do?

I am still right where I was when I was 25 and so upset I couldn't conceive. I can't have a baby now, just like then, I'm in pain now just like then, and all my symptoms are still here. But in the end can I really blame my doctor?

Yes, she may have been the one with the degree but I'm the idiot who didn't get a second or third opinion. I trusted her, that is my mistake, one I won't soon make again. What can I do to help myself? Any suggestions?


Name: Hannah

Title: I am sorry you are hurting again!!

I just wanted to let you know I know what you are going through. I had a LSH-BSO (I had everything but my cervix removed.) After 6 weeks the doctor put me on Oestrogen which ended up letting the Endometriosis to come back. Just so you know, Endometriosis produces its own oestrogen and nerve supply. And unfortunately, doctors don't know anything about endometriosis.

I had to do all my research to find out about it and I had to educate my OB/GYN. Unfortunately, there isn't alot known about the disease and there aren't very many specialists. I suggest you do an internet search on DR. REDWINE, he is an Endometriosis Specialist from Oregon.

I would have loved to go see him but he doesn't accept Medicare. I hope you find some relief soon!! I will be praying for you!!


Title: C section and endometriosis

I'm sorry to hear that you're in pain again with this disease. I too wondered the same thing. I had 3 C-sections, 2 before I had Mirena.

After 2 years of the Mirena coil I couldn't handle
the pain anymore and had it removed. I got pregnant with my 3rd baby, had a couple of complications. Finally gave birth in July 2011, and the pain slowly came back.

At my yearly check-up we discussed my pain. The doctor did my exam and he said, 'well I think its endometriosis.

On 12/7/2012 I had my laparoscopy, doctor told my husband my uterus is covered and needed it removed. He now understands why I've been in so much pain this whole time. I go the 13th for my post op and were going to discuss the hysterectomy.

I just don't understand how it can spread and cover so much in a year. But I guess it happens.

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