My own story

[ICNDonna]

I first had irritable bladder symptoms following a hysterectomy in early 1974. Diagnosis was made more difficult because, in addition to IC, I also had adhesions. The gyn who did my surgery felt that my problem was 100% psychological. That was the ony time any doctor has even suggested this. Needless to say, I left his office never to return. I took two steps at that time --- (1) a urologist appointment and (2) an appointment with an internal medicine physician. The internist referred me to a different gyn at my request and a pelvic lap was done, during which the adhesions were discovered. I had already had a cysto and waited to see if the lysis of adhesions would eliminate the pain. It did not so did a return trip to the urologist. He suggested a hydrodistention, which not only diagnosed the IC, but significantly alleviated the pain for many months.

I have now had my IC diagnosis for 25 years, still use hydrodistention as a primary treatment, am on maintenance DMSO instillations monthly. The medications I have on hand and take, as needed, for IC are hyoscyamine, ultram (phenergan to take with the ultram), and pyridium.

My other heath problems are hypertension, TMJ, sciatica, and some allergies. I had TMJ surgery in June and am well on the way to recovery from that.

I feel good most of the time and am able to live an active life. I do have to watch what I eat and drink, as do most of us.

Donna

[Ken]

Hi Donna,

I think it was a great idea for you to post a quick summary of your long experience with IC. You may or may not have noticed that I often submit a reply shortly after yours and seem to be on the same track. I, too, am helped most by hydrodistension and secondarily by DMSO instillations.

I have been diagnosed for just over 2 years and, unlike your experience, immediately connected with an IC-familiar and very sympathetic urologist.

I noticed your IC showed up after a major operation. Mine showed up after a laser blast to open a new urethra through my prostate. Do you suppose there is any connection between IC and other operations?

Ken

[ICNDonna]

Ken, that's very interesting. Some years ago I participated in a study --- the results showed that there was a significant number of participants with IC who had some sort of abdominal surgery or injury within two years prior to onset of IC.

Makes me wonder.....
Hugs,
Donna

[Leda]

Hi Donna--Just going through the message boards, I took the rest of that day off from work today, I just could not handle the pressure I've been experiencing. I feel like I am ready to lose my mind. I am currently trying ditropan xl, but it does not seem to be helping, in fact I think I feel worse (been on 1 week now) I've been through all the instillations, none helped. I just don't know what to do anymore. I have a trip to take at the end of the month, I'm constantly uncomfortable with pressure and frequency. I'm starting to go through all the meds and things I went through 3 years ago. Any suggestions? thanks, Leda

Originally posted by ICNDonna:
I first had irritable bladder symptoms following a hysterectomy in early 1974. Diagnosis was made more difficult because, in addition to IC, I also had adhesions. The gyn who did my surgery felt that my problem was 100% psychological. That was the ony time any doctor has even suggested this. Needless to say, I left his office never to return. I took two steps at that time --- (1) a urologist appointment and (2) an appointment with an internal medicine physician. The internist referred me to a different gyn at my request and a pelvic lap was done, during which the adhesions were discovered. I had already had a cysto and waited to see if the lysis of adhesions would eliminate the pain. It did not so did a return trip to the urologist. He suggested a hydrodistention, which not only diagnosed the IC, but significantly alleviated the pain for many months.

I have now had my IC diagnosis for 25 years, still use hydrodistention as a primary treatment, am on maintenance DMSO instillations monthly. The medications I have on hand and take, as needed, for IC are hyoscyamine, ultram (phenergan to take with the ultram), and pyridium.

My other heath problems are hypertension, TMJ, sciatica, and some allergies. I had TMJ surgery in June and am well on the way to recovery from that.

I feel good most of the time and am able to live an active life. I do have to watch what I eat and drink, as do most of us.

Donna

[ICNDonna]

Leda, have you ever tried any of the antispasmodics? I take hyoscyamine as needed and it really helps me. It does take several days to "kick in" but it really helps the frequency/urgency.

Hope this helps.

Hugs,
Donna