ENDO Messages for July, 2005: Re: Bladder pain...anyone else?

Re: Bladder pain...anyone else?

From: Anna (anonymous@obgyn.net)
Sat Jul 9 17:12:03 2005

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Bladder pain, oh my, yes. Cindy, if you are not ready for a hysterectomy, then listen to yourself. And besides, there is no guarantee (nevermind a logical link) that removing the uterus will make endo on the bladder go away.

I had lots of endo on my bladder, and I went in for excision surgery by a highly skilled doctor. He removed lots of endo from my bladder, and it has been a lot better. The main improvement is that I don't have to go every 20 minutes anymore!! Pain has improved, although it hasn't completely gone away. It's lots better.

For any endo sufferers dealing with bladder pain: Definitely, definitely, go to a GYN or urologist WHO IS FAMILIAR with Interstitial Cystitis (IC) and its treatments. It is very common to have both endo and IC. I first went to a urologist b/c my GYN suspected IC, and it was awful-- the urologist knew next to nothing about IC (although he talked like he knew about it). The lesson here is to do your homework. The urologist I saw told me that there are NO treatments for IC. In fact, there are at least THREE. The second lesson, then, is to take the time to find a good doctor.

If it is IC, one of the best things for me has been antihistamines. With IC, mast cells in the bladder release histamines, which causes bladder spasms, which cause pain and frequent urination. Thus, allergy medicine can actually help the bladder. I also took Enablex for the bladder spasms, and it was great too. I also tried a treatment where the nurse injects your bladder with a soothing combination of medicines, which lasted about a week and felt like heaven.

Hang in there, and don't give up! There are options out there. If a doctor tells you that you don't have options, see a different doctor. The endo association has a list of endo specialists -- that's how I found my fabulous doc.

Love, Anna

At Sat, 9 Jul 2005, anonymous@obgyn.net wrote: >
>I also suffer from really bad bladder pain.. Is there anything you
>found that helps relieve the pain?
>
>At Fri, 8 Jul 2005, cindy wrote:
>>
>>It is getting worse.It wakes me up in the middle of the night,severe
>>bladder pain.Then when I try to urinate,I have to push so hard to get it
>>started.I was told that I have endo very bad on the bladder area.That
>>was at my last lap 2 yrs ago so I can only imagine it to be worse now.I
>>have been told I have probably the worse case of endo my gyno has ever
>>seen,he keeps pushing for a hysterectomy which I am not mentally ready
>>for.

--
-Anna

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