Endometriosis story

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

Bladder endometriosis

by Lori
(Shorewood, IL USA)

It all started with what my urologist thought was a bladder infection (which I had never had). When it was confirmed I didn't have one, he decided to do a cystoscopy. I was so frustrated with the constant urge to have to urinate, that I didn't know where else to turn, so I did it.

He said I had cystitis. After about a month of never having relief of my bladder (even when it was empty), and visiting about 8 doctors, I realized that no one ever looked at the outside of my bladder. So I insisted that my gynaecologist perform laproscopic surgery, and they found tons of endometriosis on my bladder. In fact one piece was so embedded that they couldn't get it out without a urologist, so they left it in. (I personally think it became embedded when the urologist did the cystoscopy.)

Since my symptoms didn't subside after surgery, I went on Lupron to put me into a fake menopause. Since I still felt the urge to urinate constantly, and I wasn't getting better, I had to go on Paxil to deal with the symptoms. I couldn't take the constant feeling that my bladder was full even when it was empty.

Finally, after 2 months of being on Lupron, my symptoms began to subside. But after going off the Lupron they came back. So after the 3rd round of Lupron, I decided to have a hysterectomy to live a normal life. I couldn't be happier with the decision. If you know something is not right with your body, keep fighting, no matter what anyone tells you.

I was told by 9 doctors that I was going to have to learn to live with an irritated bladder.... nothing could have been further from the truth.

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