Re: Interstitial Cystitis Anyone?
From: holly (anonymous@obgyn.net)
Sun Feb 27 18:55:44 2005
i'm sorry you haven't found anything yet to help with IC. you mentioned
the ic network. i think they're great. and the online cookbook is
really helpful. you asked about dx with cystoscopy. i've had 2
cystoscopies in the last 2 years. both showed ic. i wonder what it
would look like now that the stuff seems to be treated. :?
hope you find some relief soon. since doing the doxycycline stuff, i
feel like i have a life again. i'm not constantly looking for a
bathroom every time i leave the house. (((hugs)))
At Sat, 26 Feb 2005, anonymous@obgyn.net wrote:
>
>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
>>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)