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Re: Interstitial Cystitis Anyone?
From: anonymous@obgyn.net
Sat Feb 26 21:21:11 2005
Sadly I have yet to find anything to help my IC. But I guess I should
feel lucky cause my Urologist immediately figured it was IC, even though
I already knew it was before I went to see him. And I had to find out
about IC myself, which I learned about on this site, even after telling
tons and tons and tons of doctors like my whole life about my bladder
problems (had since I was a little kid). But that is really weird that
your urologists didn't think you had it! My urologist keeps up to date
on the IC treatment and knows a lot. My first appointment with him I
got wayyyy confused cause he just was telling me about all these
different treatments and soooo much about IC! I've also learned quite a
bit from the IC network, do you guys go there? Have you guys even been
officially diagnosed with IC, like had a cystoscope? Well nice to see
other who have both endo and IC like me! ~Rachel
At Fri, 18 Feb 2005, holly wrote:
>
>anna,
>my gyn is the one who finally treated me for IC. it is weird. 3
>urologists couldn't find a good treatment, but the ob/gyn found one to
>put it into remission. well, his wife if a uro, so she did help too.
>what worked for me was huge amounts of doxycycline for me and my dh
>(treated it as if it were something being ping-ponged back and forth
>between us). it's been in remission since october.
>
>i did try the antihistamines, and they gave me a little relief. but it
>didn't last long. it worked better for stress flares for me. when i
>felt one coming on during times of bad stress, i'd take them and notice
>some difference. but so far, the doxycycline has worked. i'm having
>bladder pain now, but it's different from the IC flares, so i don't know
>what it is. heck, it might be a real live uti for all i know. lol.
>
>At Fri, 18 Feb 2005, Anna wrote:
>>
>>I have endo and my endo specialist said that according to that IC
>>questionnaire (which I've done 3 times now), I have a 91% chance of
>>having IC. He gave me a week's worth of "Enablex" (darifenacin), which
>>really seemed to help.
>>
>>Here's an experience I'm sure you people can appreciate: my urologist
>>said, and I quote, "It would be verrrry unlikely that you would have
>>both endo and IC at the same time." How do you like that? What a joke.
>>How could he be so ignorant to the "evil twins"? He was a real putz
>>though, sorry if that's rude. He said that even with my frequent
>>urination and pain, he didn't see a reason to suspect IC. Every GYN
>>I've ever seen has suspected IC. But the urologist comes through with
>>the "you seem fine to me" conclusion that I've been getting sort of
>>frustrated with! He also said, "There is no treatment for IC, so you
>>better hope it's the endo." And my endo specialist told me about three
>>treatments for IC, and went to the trouble of starting me on one. How
>>is it that my endo specialist knows a whole lot more about IC than my
>>urologist? I swear...
>>
>>Anyway.
>>
>>Did you know that with IC, the mast cells produce lots of histamines, so
>>OTC allergy medicine can sometimes help IC?? I had no idea! So much to
>>learn.
>>
>>Thanks for sharing your stories. I am just learning about IC now.
>>
>>-Anna
>>
>>At Fri, 18 Feb 2005, anonymous@obgyn.net wrote:
>>>
>>>I have IC and endo. I was diagnosed with endo Jan. 2004, but had for 5
>>>ywars before that, and was diagnosed with IC Aug. 2004, but believe I
>>>have had this since was a little kid. Always had to go to the bathroom
>>>more than everyone else! Now my symptoms of IC is constant lower back
>>>and pelvic pain, and go to the bathroom 30-40 times a day, even though
>>>when flared can be up to 50-60 times a day. There are several
>>>treatments that can help, but I have yet to find anything to help me,
>>>but have'nt tried very many things yet. I have been on the diet for it
>>>since before I was diagnosed, and it somewhat helps. After being
>>>diagnosed with endo, I found this site, and actually found out about IC
>>>through this site, and made an appointment to see the Urologist, than
>>>had the Cystoscopy. I have told doctors for years that I had frequent
>>>urination problems and they never did anything about it! The website
>>>that the girl posted for IC is a great one, I have learned a lot through
>>>that, and the messege board they have is great! I don't know everything
>>>about IC, but quite a bit, so if anyone wants to email me about it my
>>>email is smily_rachel86@hotmail.com
>>> ~Rachel
>>>
>>>At Thu, 17 Feb 2005, anonymous@obgyn.net wrote:
>>>>
>>>>At Wed, 16 Feb 2005, Tish wrote:
>>>>>
>>>>>I had my first lap for endo in January 2005 which revealed stage 3 endo.
>>>>>I lost 60% of one ovary, had a pear sized cyst, had adhesions on my
>>>>>bowel, bladder, appendix (was encapsulated with endo and removed),
>>>>>abdominal wall, ...blah blah blah...EVERYWHERE.
>>>>>
>>>>>My doc also diagnosed me with Interstitial Cystitis (IC) during the
>>>>>surgery.
>>>>>
>>>>>I have learned a lot about IC and it's prevalence among Endo sufferers.
>>>>>The two diseases co-exist so frequently that they have been named the
>>>>>"Evil Twins". Because both diseases are incurable and no one knows why
>>>>>or how either disease starts, it is hard to say why so many women with
>>>>>endo develop IC. IC gets misdiagnosed frequently, and because it's
>>>>>symptoms are similar to endo (abdominal pain), once a woman is diagnosed
>>>>>with endo they assume all of the pain is endo pain. The only way to
>>>>>diagnose IC for certain is through a procedure called a cystoscopy where
>>>>>they put a scope in your bladder to "see" the evidence of it.
>>>>>
>>>>>During my surgery for endo, my doc did a cystoscopy when he saw that my
>>>>>bladder was inflammed. He also did a treatment (part of the diagnosis
>>>>>too)for IC which requires the patient to be anesthetized, and since I
>>>>>was already under, he did a bladder distension (stretching of the
>>>>>bladder which is too painful to endure if awake).
>>>>>
>>>>>I am interested in finding out how many women (percentage/statistic) who
>>>>>have endo have IC. If you know, or if you have both, please post here.
>>>>>I am also interested in anything anyone who has been diagnosed with both
>>>>>has to say. This is still new to me.
>>>>>
>>>>>Or if you think you may have IC, I may be able (even with my limited
>>>>>experience) to answer some of your questions or guide you to finding
>>>>>answers.
>>>>>
>>>>>--
>>>>>Tish
>>>>>
>>>>Hi, Just wanted you to knnow, that I was diagnosed with IC a year after
>>>>diagnosis of endo. My RE noticed this with an ultrasound and
>>>>recommended a urolgist to see. After year of assuming I had other
>>>>conditions, and treating me with drugs and biofeedback to strengthen my
>>>>pelvic floor muscles, she performed the cyto with the distention and
>>>>said I was very inflamed. I was told the Elmiron the drugs used to
>>>>treat IC may take over a year to become effective for pain. So while
>>>>waiting for this drug to work, I have to wonder if my pain is due to the
>>>>IC or endo. Hope this helps! Liza
>
>--
>holly
>mild endo and IC
>
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