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.