Questions

[ginaaa22]

I have a couple of questions...

Is every different persons disease process different? (I mean in relation to what works, remission, flares, meds) Why I ask is because I see some of you say I'm having a "flare" but myself personally there is not one day where I don't have any symptoms, whether they are frequency, urgency, pain, stinging and rawness. Some days are manageable but others are horrible.

If something has worked in the past should someone retry that? Has anyone not responded to something like instillations then had it done a couple years later and it helped? Like the instillations, past meds and surgery.

Today I am feeling absolutely horrible I keep telling my dr's that things get worse everytime my hormones shift. My pelvic area is on fire right now.
For other patients who get worse around the time of your period what can you do? The only thing my dr's have tried is using birth control, which I have an IUD. I do not bleed anymore... but my vulvodynia, IBS, and IC are all acting up.

Is there anyone on here who is in the medical field? Like a nurse? I graduate next year as an RN and I'm so scared I'm not going to be able to practice because my body wont be able to handle it.

Are there any patients on here who dont take elmiron or cystoprotek? I am not taking either right now because they havent worked in the past but I might try them again.

I feel like every time I make a step in the right direction something else gets worse. For instance my nocturia is getting better but my vulvodynia and IBS isn't. It is extremely hard to work full time, go to nursing school, find time for me, my husband and have IC, vulvodynia, IBS, fibromyalgia and food allergies For years I have been searching for answers as to why I don't feel normal and now that I have been diagnosed I feel like there is so much more that I don't know.

[VickiB]

I'm not a doctor or anything so all of this is just my opinion

Is every different persons disease process different? (I mean in relation to what works, remission, flares, meds)

It seems that way to me. There appears to be a variety of IC symptoms possible, -quite often in combinations, yet we all don't necessarily share all of the same symptoms. One person will find dramatic success with a treatment (or med) but the next person will find no improvement at all from it. Some have short flares while others have flares that drag on for days, weeks, or more.

I see some of you say I'm having a "flare" but myself personally there is not one day where I don't have any symptoms, whether they are frequency, urgency, pain, stinging and rawness. Some days are manageable but others are horrible.

I'd describe a flare as any increase from what your baseline normal is. I think it is possible to be in one long, extended flare, perhaps never getting it calmed down enough to even reach that baseline though. I used to be miserable, with slight fluctuations, for six weeks at a time. Looking back I'd say those episodes were just one big long flare for me. Now my flares only happen on rare occasions and usually run their course in 6 to 24 hours. (they're still as miserable as ever during that 6 - 24 hrs though!) My symptoms don't totally go away in between flares but they are so minor that with the slightest distraction I don't really notice them.

If something has worked in the past should someone retry that?

I probably would!

Your other questions either don't apply to me or I have no experience with. Hopefully others will post answers. I do believe that hormones can influence IC symptoms, but I never found any good solution to that one for myself.

I feel like every time I make a step in the right direction something else gets worse.

Managing IC ought to be enough of a trial for any one person! I imagine when one has multiple issues it's a real balancing act!

Vicki

[bob04951]

Truly don't think there is a single person who does not have symptoms on any given day. But that being said, there are good days, and you just hope that today may be one of them. One never knows, it is such an odd thing, and sure you will get a lot of responses from gals who go through symptoms every month. Try keeping a diary for a few months and maybe you can figure out what triggers your flares. This is also helpful when you see your doc, because he/she may be scratching their heads as well. It is very mysterious and the cause of flares is sometimes, well, a mystery. Hope you feel better soon, try to get more rest when that time of the month is coming and stay as stress free as possible. Take care of yourself, the rest of the stuff can wait until tomorrow (the Scarlett O'Hara theory). Jill, wife of Bob

[ICNDonna]

Actually there are many ICers who have symptom free days. There are days when the only thing that tells me I have IC is that I urinate more frequently than most of my family and friends.

I think you will make a wonderful nurse! We do have some members in the health care field who are able to work.

Elmiron can take six months or more to become effective --- I know of at least one person for whom it took a full year --- and she thinks it was well worth the wait. If you don't have unpleasant side effects from it, I think trying again might help. How long did you take Cystoprotek? It can take a while, but not as long as the elmiron.

Sending warm healing thoughts,
Donna

[cmclien]

[QUOTE=ginaaa22;570478]I have a couple of questions...

Is every different persons disease process different? (I mean in relation to what works, remission, flares, meds) Why I ask is because I see some of you say I'm having a "flare" but myself personally there is not one day where I don't have any symptoms, whether they are frequency, urgency, pain, stinging and rawness. Some days are manageable but others are horrible.

Are there any patients on here who dont take elmiron or cystoprotek? I am not taking either right now because they havent worked in the past but I might try them again.[ENDQUOTE]

Hi,
Sorry you are suffering so much!
I pretty much always have symptoms though they are mild on most days. I used to think, what is a flare? I always have some symptoms. I suppose now that I follow the diet I think a flare is when drinks or food make my bladder hurt more so I guess I have mini flares and the rest of the time I just have frequency.

I think cystoprotek is worth taking. I haven't started elmiron yet but am going to ask my doc about it Monday. I feel like even if they only help a little its worth it.
I also take the freeze dried aloe vera and sometimes I used to wonder if it did much but I've decided it does (its hard to figure what is helping and what isn't). I think it helps with inflammation and I think my mild VV is much better then it used to be maybe becuz of the aloe vera and definitely becuz of the citrates I take with every meal.
I'm certainly no doctor but has anyone suggested calcium citrate to you for VV? It helps alot of people. Also mucinex taken twice daily is supposed to help ( I take that too). Google it when you have a minute.
I really feel for you. When my VV has acted up it is an awful tender rawness that makes it uncomfortable to sit.

[ginaaa22]

cmclien: No i have not tried calcium citrate, although I have read some info on it. Is it like taking tums? Where do you buy freeze dried aloe vera. At this point im willing to try ANYTHING!!! My vulvodynia is out of control and quite possibly worse than my IC!!! When my vulvodynia acts up it hurts to even wipe with toilet paper.. it gets so raw and inflammed. I get flares of that when I start my period, when I'm ovulating, after sex, if I go to the bathroom too much in one day (my IC acting up) or just from sitting too much.

Donna: I took cystoprotek for 5 months, no help. Elmiron for a year, no help. I'm probably going to go back on cystoprotek. I pray that there is a day when I am symptom free I will be a new woman!!!!!!

When I was in a horrible flare I saw my dr in the vulvar clinic who see only patients with vulvar diseases. They said i had a "itch scratch cycle" and gave me antibiotics, prednisone, and cream to use down there. I got better and had no symptoms for about 2 weeks and when I stopped the prednisone it got bad again. I recently just saw this dr again, like two weeks ago and she said to keep taking my elavil, atarax and creams and it will get better. some help she was. I will be so excited and feel so relieved when I graduat as a NP so I can really know what will be best for me and I can get my problems under control.

[cmclien]

cmclien: No i have not tried calcium citrate, although I have read some info on it. Is it like taking tums? Where do you buy freeze dried aloe vera. At this point im willing to try ANYTHING!!! My vulvodynia is out of control and quite possibly worse than my IC!!! When my vulvodynia acts up it hurts to even wipe with toilet paper.. it gets so raw and inflammed. I get flares of that when I start my period, when I'm ovulating, after sex, if I go to the bathroom too much in one day (my IC acting up) or just from sitting too much.

No, its not like taking tums because its specifically the citrates that are supposed to bind to the oxalates and get rid of the excess. You seem so miserable right now, you should be able to buy calcium citrate at any drug store, no other kind will do, it has to be the citrate. Do a little research on line to see how much you should take each day with every meal. It won't be instantaneous but should help over several weeks?
Put a post out there about VV and citrates, I know I've seen people post here who have had success with it.

The freeze dried aloe vera is supposed to help with inflammation. I don't know if it will help your VV but they sell it on this website or you can research it by going to the Desert Harvest website, they have information specifically regarding IC and a study that has been done.

[ginaaa22]

Thanks, I will defiantly try it. I know I have read somewhere that calcium citrate raises the ph of your urine and makes it not burn as much when you vulva is irritated.

And yes thanks for noticing that I am miserable. It is so hard for people to understand because I have "invisible illness" and I work in customer service so I have to put on my game face and pretend that I am okay. I also go to a private catholic college where there isn't many students (like 600) and it is very competitive.

When I first got diagnosed I put a lot of time and effort into treatment (going to dr apt's, taking my meds, getting instillations, surgery, PT) and I didn't get better. It never sunk in that IC, as well as my other conditions, are chronic diseases with no cure. I plan on becoming a NP in uro-gyn specializing in people with IC and its related conditions.

[cmclien]

Thanks, I will defiantly try it. I know I have read somewhere that calcium citrate raises the ph of your urine and makes it not burn as much when you vulva is irritated.

And yes thanks for noticing that I am miserable. It is so hard for people to understand because I have "invisible illness" and I work in customer service so I have to put on my game face and pretend that I am okay. I also go to a private catholic college where there isn't many students (like 600) and it is very competitive.

When I first got diagnosed I put a lot of time and effort into treatment (going to dr apt's, taking my meds, getting instillations, surgery, PT) and I didn't get better. It never sunk in that IC, as well as my other conditions, are chronic diseases with no cure. I plan on becoming a NP in uro-gyn specializing in people with IC and its related conditions.

You will make a GREAT nurse as you will have first hand knowledge. It has to be super hard going to college with the stress of this chronic illness causing you daily pain and discomfort.

Besides raising your ph the citrates will get rid of excess oxalates (have you heard of the low oxalate diet?) it crosses over with the IC diet but a little more restrictive.

I wish I could tell you why mine went away after two years of on and off again symptoms, maybe it just took awhile for the calcium citrate to kick in but I have noticed if I don't take any my symptoms start coming back and I'll think "what has changed?" because sometimes I will not take it. I don't know if this will work for you but worth a try seeing where you are at.

I ran across this website when I was having moderate VV symptoms, (tender to wipe, sit etc) and its super informative and really just covers every conceivable question, theory etc about VV. http://www.vulvodynia.com/faq.htm#**7. WHAT SHOULD I TRY?**

Here is what is said about citrates though:

Some women use calcium citrate -- 500 mg, three times a day -- to
help bind the oxalates and prevent crystal formation. This doesn't
necessarily LOWER oxalate levels, but it may reduce the pain. If you can't
tolerate (or can't find) calcium citrate, calcium carbonate (such as is
found in TUMS) seems to also work, albeit for fewer people. Usually,
magnesium is taken as well (up to 1500 mg/day), to avoid constipation and
to help with calcium absorption. Some controversy exists as to when the
calcium should be taken. Clive Solomons argues that the calcium should be
timed to one's oxalate peaks; others argue it should be taken 20 minutes
before eating (for maximum absorption); still others feel it makes no
difference. Please note that many women have achieved success with the
diet regardless of whether they have had urinary oxalate levels tested and
without taking the citrate at specific times. The importance of *some
kind* of citrate supplementation to the low-oxalate diet is not disputed
by any of the different groups supporting the oxalate theory. Length of
time until pain reduction on the diet varies greatly, with some women
reporting improvement after a week or two, and others requiring six months
or more to see progress.

The info on magnesium citrate here is a good point as you don't want to get constipated taking all that calcium and the citrates in the magnesium will help as well.

Post if you have success.