Hi Briza,
I just read your suggestion for a new board for IC and it's wonderful companies such as Vulvodynia, etc, and I just wanted to thank you for raising this issue! I suffer from something close to Vulvodynia called DIV (Desquamative Inflammatory Vaginitis), which has been a nightmare for years and I've been unable to get much info as no one on any of these boards seems to know about it. In the course of that diagnosis, I was also told it appears I have IC (have not gone to the Urologist to find out yet as the idea of having a tube placed into my bladder is scaring the heck out of me!), and also have symptoms of IBS. They put me on Elavil right away, but it didn't help, and it made me super groggy during the day (and I gained weight, never fun), so I had to stop taking it.
I truly believe that each and every one of my current health problems are related. Oh, and lucky me, besides the DIV, IC and IBS, I have some undiagnosed illness that so far is being called Fibromyalgia and CFS, although my doctors are not certain. They just wanted to call it something so they could start treating me with certain meds that you can't just hand out to anyone off the street. We started with Adderall. I've been on it for about 6 weeks, and while I haven't seen much improvement in my severe fatigue or cognitive issues, I have noticed that the symptoms of IBS and the unbearable need to urinate but never feeling like my bladder is empty and the bladder pain, etc, has drastically reduced. I thought I might be crazy, so I did a little web research and lo and behold, other adderall users have reported this as well. What do you know!
Anyway, I wanted to share that annecdote for IC sufferers.
Sorry to hear you are a fellow IC sufferer too! I suffer from the most of the same things that you do. Only, except for Adderall, I take Provigil. It really seems to help alot. I want Briza to try it too, since she has alot of trouble with daytime drowsiness. (She and I are friends from another board for IC patients.)
Anyway, it is nice to "meet you"! I am glad that the Adderall is bringing you some relief! Goodness knows we dont get alot, huh?
Hi Briza,
I just read your suggestion for a new board for IC and it's wonderful companies such as Vulvodynia, etc, and I just wanted to thank you for raising this issue! I suffer from something close to Vulvodynia called DIV (Desquamative Inflammatory Vaginitis), which has been a nightmare for years and I've been unable to get much info as no one on any of these boards seems to know about it. In the course of that diagnosis, I was also told it appears I have IC (have not gone to the Urologist to find out yet as the idea of having a tube placed into my bladder is scaring the heck out of me!), and also have symptoms of IBS. They put me on Elavil right away, but it didn't help, and it made me super groggy during the day (and I gained weight, never fun), so I had to stop taking it.
I truly believe that each and every one of my current health problems are related. Oh, and lucky me, besides the DIV, IC and IBS, I have some undiagnosed illness that so far is being called Fibromyalgia and CFS, although my doctors are not certain. They just wanted to call it something so they could start treating me with certain meds that you can't just hand out to anyone off the street. We started with Adderall. I've been on it for about 6 weeks, and while I haven't seen much improvement in my severe fatigue or cognitive issues, I have noticed that the symptoms of IBS and the unbearable need to urinate but never feeling like my bladder is empty and the bladder pain, etc, has drastically reduced. I thought I might be crazy, so I did a little web research and lo and behold, other adderall users have reported this as well. What do you know!
Anyway, I wanted to share that annecdote for IC sufferers.
Sorry I am so late in responding...hurricane dean was headed straight for me last week and was busy stressing and getting hurricane prep and evacuation stuff ready, boards on windows, etc, wore myself out and I'm a teacher and had to start work on the 20th. Also along with the whirlwind of shopping for hurricane stuff and school clothes...I only made it as far as walmart and one surf shop that sells shoes, I have pushed myself over the edge and had to take a day off THE FIRST WEEK OF SCHOOL yesterday, my body and bladder and all it's referred pain just gave out on me.
Desquamative Inflammatory Vaginitis...have not heard of this before but will do some research and pass on anything I can find. Do you have any treatments for it it and what do your doctors say causes it or do they have anything to say? I know they ususally just shake their heads and throw up their hands.
I have a good gyn and pain clinic dr now and my IC and VV and Vulvodynia are generally well controlled...I have a good treatment plan and finally a pain med that works without side effects after much trial and error...if you would like me to tell you what meds I take and how they work for each of my lovely symptoms from all these conditions, just post and I will write you back. At this point I don't have nor want a urologist, since my gyn is able to rx all my meds and treatments except my pain med. I believe Ihurttoo also mainly uses her gyn for her IC and related conditions treatment. Not that urologists aren't necessary, but I have a good long relationship with my gyn and he is willing and able to treat my conditions. There is a shortage of urologists where I live, so it's very very hard to get an appt and the wait is long. I can usually see my gyn the day or week I call for an appt
I'm glad to hear your IC symptoms are under control, and yes, I've had the cysto/hydro and no it's not any fun and for me very painful but sometimes it is necessary but not always. Many are dxd based on symptoms, PUF survey, and how they respond to the standard protocol IC meds, no cysto/hydro necessary. There is also the Potassium Sensitivity TEst, but like the cysto/hydro...it does not always give you a for sure diagnosis, which is why the PUF survey, your symptoms and how the meds work for you can be much more accurate in determining if you have IC.
Thanks for sharing about the adderall, and I will probably need what Ihurttoo says to keep me awake since my house is all boarded up and it's dark all the time. Plan on leaving the boards up til hurricane season is over. Can't handle that stress or the paying to have them put up again if another one threatens to come this way. BUt many prayers for those in Mexico where the hurricane did hit. I have many friends who live in that area of Mexico so I'm very sad for that it hit there. Well, I get sad when a hurricane hits anywhere.
Best wishes to all, let's keep the webmaster notified of the need for some subforums within the urology forum. There are so many urological conditions it would be nice if it were organized by condition and related conditions, since it seems these things come in threes
Sorry we are so late seeing your post and getting back to you! I sure hope you come back and see this! Anyway, I did a bit of research on the DIV, since I had never heard of it either. I researched this at several web sites to try to help you. The information I am about to give you is a compliation of information from many sites. (Just to let ya know, I am a terrible "linker", but I will try to paraphrase what they said, just in case I botched the link.) They are saying that it is an acute inflammation of the vagina that causes easy bleeding vaginally during exams or sex. Also, it causes red, eroded places on and in the vagina that secrete green and yellow pus. Also when blood is drawn, infection is usually present in most, (but not all patients.) However, there is a small subset of patients for whom infection is not present. Pennicillin is generally tried first. After that, Clyndaycin cream is r/xed to be applied intravaginally, usually along with hydrocortosone suppositories.
I am a bit confused by this b/c even though some sites are saying that it is usually caused by an infection, most sites are saying that it is thought to be an autoimmune disease. (That is why they r/x the steroid suppositories.) So, I can understand your confusion. Maybe this is another disease like IC, where some think it is autoimmune, but others firmly believe it is an infection in the bladder walls. Who knows!
But, whatever the case, it sounds like you should start with the Pennicillin, if you havent already. Then, the Clyndaycin cream and hydrocortosone suppositories. After that, if you are still not experiancing relief, I would go see a Rhematologist, since from what I am reading alot patients respong to a systematic (oral) steroid when they dont respond to a local steroid.
Now, about your possible IC, Briza is right about me, I dont see a Uro either. Like Briza, I am treated by my Gyno. (We both love our Gynos and had bad experiances with Uros.) As for the cysto-hydro, I can understand your apprehensiveness. It IS an invasive procedure, and there are other ways of finding out if you have IC without having to put yourself thru that at this time. Many Gynos can do a Potassium Senstivity Test (PST) in the office to test for IC. It only takes about 5 min and is much less traumatic than a Cysto/hydro. Also, there is a PUF Questionaire that you can fill out at most Gyno's offices now, (if not, I am sure they have one on the Elmiron website). Print it off, fill it out, and take it in to your GP or Gyno, and many Drs. can d/x based on your answers to the questionaire (plus symptoms and history) alone. While others might want to also do the Postassium Sensitivity Test (PST). Still others may just do a trial of IC meds for a few months and do a "wait and see" approach.
I think that with you, the FIRST thing I would do is go see a Rhematologist. And BEG for a trial of oral Prednisone or some other steroid. I say this b/c I have Lupus, (an auto-immune disease) as well as IC, Fibro, CFS, Vulvar Vestibulitis, Vulvadynia, Endo, Pelvic Adhesions, IBS, and GERD and whenever I go on steroids (usually Prednisone), I ALWAYS go into COMPLETE and TOTAL remission from EVERYTHING for the whole time I am on it, and sometimes for several months afterwards!
Since so many researchers think that IC, Fibro, CFS, Vulvadynia and all the other diseases that you, Briza, and I all have, and the DIV you have are auto-immune, THAT's why I really, really want you to go to a Rhematologist first and BEG if you must to do a trial of Prednisone.
To find a good, Rhematologist, (one who's patients really like him/her) try going to one of those sites where patients rate their Drs. and look at the comments on all the Rhems in your area before you go to one. (This is how I found mine, who I LOVE!) I have to drive 5 hours round trip to get to mine, but she is well worth it. (We only have one Rhem in our small town, and he is a jerk. So, I drive to a metro area where there is a large selection.)
Okay, I have talked your head off! Sorry about that! (And I am not even sure if you are ever even gonna come back to this board or not, since we took so long in answering your post! But, I sure hope we see you again!)
Anyway, I hope this helps!
Kind regards,
Amy
Last edited by moderator2; 08-25-2007 at 07:51 AM.
Reason: posted commercial website
Re: Briza? Also interesting relief of IC... 
Plan on leaving the boards up til hurricane season is over. Can't handle that stress or the paying to have them put up again if another one threatens to come this way. BUt many prayers for those in Mexico where the hurricane did hit. I have many friends who live in that area of Mexico so I'm very sad for that it hit there. Well, I get sad when a hurricane hits anywhere. 
But, I sure hope we see you again!)
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