Diagnosed yesterday, looking for answers

[AJM]

Hi!

Yesterday I was diagnosed with Interstitial Cystitis after having a year long problem with sexual pain as well as a diagnosis of vulvodynia. I was diagnosed by a potassium density test- the pain and urgency came after the test was completed. During the test, I rated my pain a 2 or 3 out of 5, but driving home was when I experienced all the pain and uncomfortable feelings in my bladder. My doctor put me on Elmuiron and gave me a diet plan which is nearly impossible to follow.

After reading a lot of these forms, it seems like most people have problems involving UTI's, but I have never had one. I only experience pain when having intercourse then followed by urgency after even though most times I don't have to really pee at all. Peeing relieves my pain despite it being minimal. I also have similar pains when crossing my legs for an extended period of time - same burning and uncomfortable feeling of the bladder. Day to day, I do not experience problems with my bladder.

Can anyone relate to these problems? Please, any clarity and advice will help. I am a little depressed about this diagnosis and really would appreciate some advice.

Thank you,
Allison

[needsrelief]

Hi! You seem like you are in the mild stages of IC. Starting elmiron now would possibly be better that starting it as IC is progressing. Mine started out mild with minimum symptoms and progressed a great deal over 4 years. I think if I took elmiron earlier I could have been much better now. however i was turned off by the side effects. (which are rare). There are links on this site for the IC diet and they sell cookbooks. i was advised by a doc to try the IC diet for 2 weeks to see if it makes a difference. Not everyone will benefit from the IC diet but some people feel great while on it. Elmiron usually takes anywhere from 3 months to a year to work. You can ask your doctor for atarax (or the generic) or elavil (or the generic) for now. They may help some of your symptoms. DMSO and rescue instillations may help also. This site has alot of info regarding treatments and other things. I hope you find some relief in your symptoms...remember u are not alone.

[cmclien]

Hi AJM,
Welcome to the board. Not everyone with IC gets UTI's though I suppose alot of us do but its not something that would make or break your diagnosis. The potassium test is a good one I was just reading about it in Dr. Moldwins book. People without IC don't respond to the test with pain. Did they give you an anesthetic rescue type instillation after the test? They should have so that you wouldn't have the severe pain afterwards. Not everyone with IC has the same symptoms but ALOT of people have pain after sex just like you describe. I'm one of them and sometimes will have alot of burning and frequency afterwards even though during I'm ok. Sometimes I'm fine, others I'm not.

The link to the diet here is pretty good. I found it overwhelming too and kept looking at it thinking "what in the heck can I eat?". Lots of people absolutely swear by it. The biggies of course are alcohol, coffee of any kind unless it is reduced acid some people can tolerate that, carbonated beverages, caffeine, black or green tea and many herbal teas - chamomile and peppermint are usually considered safe, chocolate and spicy food. You will find you might be able to tolerate certain amounts of food and add them back in, its kind of an exclusion type diet. There is also prelief tablets you can take before drinking or eating certain foods that might help you tolerate them better. You can find them at walgreens, here on this site and amazon. They reduce the acidity of food.

@Needsrelief- my understanding from everything I have read is that IC is actually not a progressive disease. Someone can correct me if I'm wrong here. I have mild IC for 20 years and it really has never changed.

[needsrelief]

To: CmClien

I not saying that IC is a progressive disease for everyone. Im sorry if I didnt clarify. I can speak for myself when I say that my IC was mild 4 years ago and now I can say Im in the moderate stage. I didnt use to have nocturia. now I do. I didnt use to have pain. i have that now also. also an increase in urgency. My IC use to be bearable with no medications. i thought i would stay that way. within the past several months Im starting to do more aggressive treatments. I was just told, that elmiron works better in the mild stages. so the sooner u start taking it the better. I read that alot of people who start elmiron in the moderate-severe stages it takes very long to find relief or some dont find relief at all. Actually this is a transcript from dr parsons he suggests that IC can be progressive:

Early phase - Patients are usually 16-20 years old when the disease first appears, usually with symptoms associated with perhaps sexual intercourse, previous bladder infections or, even, for no obvious cause. Symptoms may occur for a week or two, three or four times a year and they seem to be relatively well in between flares. These patients frequently do not get worse, though a percentage of these will go to the middle phase of the disease.

Middle Phase - This person is more likely to be anywhere from 22 to 40 years old and have frequency, which they may ignore, of perhaps 10 times or more per day. They may have intermittent or low-grade pain cycles as I've described above, again with sex or their menstrual cycle. IC tends to flare a week before the menstrual cycle, hence their confusion with gynecological symptoms. Here I think we have 15 to 20 million women who are chronically symptomatic. If they were treated at this phase, 90% will lose most if not all of their symptoms, occasionally having problems perhaps during allergy season. Unfortunately, 99% of these patients receive no appropriate diagnosis and no effective treatment.

Advanced Phase - A small percentage of patients will escalate after a number of years to the advanced phase of the disease, where they void very frequently, perhaps fifteen or more times a day. Some experience chronic disabling pelvic pain. There may be 500,000 to a million people in this category.

End Stage - Only a very few go to what we can loosely call end stage, where they experience very severe symptoms. I doubt that there are more than 20 to 40,000 people in the US who would be in this category.

[AJM]

Needsrelief - Thank you so much for the information you provided me with. I am not sure if I am in the early stages or I may possibly be in the middle stage. I am 22, and I have not had pain-free sex in over a year. My troubles began with the burning during sex associated with vulvodynia, which was absolutley awful and caused a fissure and a lack of estrogen. Once that issue was resolved with a topical cream, the IC pain came into the spotlight - my vulvodynia pains had been so awful that I had put the IC pain on the back burner. I rarely have any pain on a day to day basis, maybe some mild pain around my menstrual cycle, but I have always associated that with just the normal pains of my cycle. How did you diagnose yourself between each phase of the disease?

[AJM]

cmclien - I am just starting this diet - and it is very extreme. I've been doing it for a day, and I've already had a slip up (with a stick of gum, sugar free). I am having a hard time cutting out the yogurt and tofu, which were two items that I had been accustomed to having. Have you heard anything about organic blueberry juice? I have heard that may work for some in helping calm the bladder. I am hearing that this diet is permanent for some, and temporary for others until the problem clears up. It is very difficult to find every day items that fit into my hectic lifestyle that fit the plan - does it ever get easier? I am very rarely ever OK during sex, I really just constantly feel burning pain on the sides of my vagina and a constant urgency throughout the whole experience. Sometimes, I want to stop abruptly and use the bathroom. Thanks for the tip on prelief - I have heard a lot about them and I am going to head to Walgreens this week to pick them up.

[icgennifer]

Hi AJM,

I'm from New Jersey (I still work in NJ, but live in PA)

Like you, I experience relief when I go to the bathroom and pee a normal amount of times per day (usually less) - I really need to give the diet a shot.. but I get so overwhelmed by it.

[cmclien]

AJM - If you don't experience pain on a day to day basis I personally wouldn't say diet is a big problem for you, imho. People who have daily pain sometimes get great relief from the diet. If you are ok except during/after sex and around your period and the rest of the time ok (is that what you are saying?) then there might be some hormonal involvement and pelvic floor disorder. Have you been evaluated by a gynecologist or your uro for PFD? A ton of people here have that and have been helped greatly by physcial therapy. PFD by itself can cause the same symptoms and during/after sex when the muscles tighten up they can spasm and cause identical symptoms with the bladder....just a thought to have that checked out.

[needsrelief]

To:AJM

I realized that I was progressing cause initially I would have some remissions, when I wasnt in remission I had some some frequency, no nocturia, not really urgency, or pain. About a year and a half ago I noticed that the symptoms that I did have were more increased and I got the new ones. I figure that Im in the middle or advanced stage now cause I urinate once an hour during the day so about 15+ times (every 15minutes during flares) and about 6-7 times a night. Now I never have remissions. Its been consistent. so thats how I know its gotten worst. and maybe (hopefully) it will stop here. I just want people to know that it may make a difference getting an earlier diagnoses and starting treatment ASAP instead of delaying it. but like i said earlier everyone doesnt progress. but I was under the impression that I wouldnt either but boy was i wrong. As far as ur vulvodynia mine is mild but since u seem to have more problems I hear elavil can work for vulvodynia. some people also go to pain clinics and get help. Most of my pain is deep pain radiating during intercourse. it may be because of cysts and endometriosis. Im on birth control now and it seems to supress that and Im having alot more painfree intercourse days. good luck

[cmclien]

Now I feel depressed

Middle Phase - This person is more likely to be anywhere from 22 to 40 years old and have frequency, which they may ignore, of perhaps 10 times or more per day. They may have intermittent or low-grade pain cycles as I've described above, again with sex or their menstrual cycle. IC tends to flare a week before the menstrual cycle, hence their confusion with gynecological symptoms. Here I think we have 15 to 20 million women who are chronically symptomatic. If they were treated at this phase, 90% will lose most if not all of their symptoms, occasionally having problems perhaps during allergy season. Unfortunately, 99% of these patients receive no appropriate diagnosis and no effective treatment.

Maybe I'm just having a bad morning but after reading this I feel down, not your fault, I'm just right there other then the menstrual stuff since I'm on the pill. I tried veggie links this morning which I hadn't had in awhile and I used to eat them every day and now I have that discomfort that makes it hard to sit but my UG has me trying to do this bladder training so I'm forcing myself to hold it even though I've had to go since 45 minutes past the last time I went. I know my bladder isn't full because its not that kind of pain. I'm definitely worse in the last 10 years then I was in the first 10 years. I never had to watch my diet before, just had the frequency. My doctor is going conservatively so no new other then the oxytrol but I meet with him again in a few weeks, might try and move that up. I think he's unclear whether its OAB or IC but if there is pain he admits its not OAB. I guess I need to be more clear about what I am feeling.

Sometimes during the day I have NO pain and can go 3 to 4 hours but other times like this morning its almost immediate so maybe what I ate....
Does anyone else experience this?

AJM Sorry if I am talking about myself on your thread! Maybe I should start a new one. I will about the changing pain though.

[needsrelief]

you seem to be having a flare... I know u were saying before that u could tolerate ur veggie links. IC is so weird and unpredictable. I dont know what to tell u. I wouldnt panick. u seem to have a regimine were ur IC is mild and under control. but even people who take elmiron and have been helped greatly experience a few flares each year that seem to come out of no where. have u tried icreasing ur dosage of aloe vera pills? On desert harvest website there is a protocol for a flare. Im not sure what brand u are taking but it would probaly help since aloe is a natural anti-inflammatory.I hope that u feel better soon.

[NelleK]

AJM:

Not everyone needs to be 100 percent on the diet. For example, I can eat whatever kind of cheese I want, I can have many of the fruits on the list that they say you shouldnt have, I can have sourdough bread etc etc. I flare when I eat spicy foods (dang you sweet chili heat chips-I former favourite) Coffee, Tea, large amount of tomatoes (like a full bowl of tomatoe soup) and large amount of chocolate.

You may notice after a while that avoiding certain foods will help, that certain foods are OK in moderation but not a ton and certain foods do not bother you at all.

For me, when I do flare luckily its only a day with some mild pain and then its gone.

[AJM]

cmclien I was diagnosed by my gynocologist after telling her about the pain during sex I had experienced as well as the urgency to go during. I've had the potassium test which was positive. I've been being treated for sexual pain for a year now, and my doctor is a sexual pain specialist. She does not think I have pelvic floor disorder - I was initially diagnosed with that when I was referred to her and she believes it was a misdiagnosis.

I did not experience a lot of pain during the test but more pain and urgency after my bladder was completley empty. I really do not have day to day pains, only again when crossing my legs for an extended period of time, biking, or having sex. I am really confused about my diagnosis because all the threads and people I've spoken to have a lot of other symptoms I definatley do not have.

Does anyone else have sexual pain? If so, could they describe it for me? I have a lot of pain on the side walls of my vagina as well as a constant urgency to pee during. Can anyone relate?

[AJM]

Oh, and I also have been treated for a lack of estrogen (what has been called vulvodynia) by a topical cream specially made by my gynocologist and a pharmacist. Wanted to throw that in there. My gyno told me that vuvodynia and IC tend to go together - she called them "sister" diseases.

[cmclien]

AJMI do have day to day discomfort right now but mostly only in the morning so have decided to go cold turkey on the coffee, ugh! I'll see how I feel.
I think alot of your symptoms are actually common, its just you don't have the day to day symptoms that alot of ICers have but there is alot of variation and you would be considered a mild case right now like needsrelief said. I used to be like that too though I've always had frequency, I used to blame it on a small bladder but found out recently I really don't have a small bladder after all!
Also, I can't tell you how many times in the middle of sex I've said to my husband, "I've gotta go pee". He doesn't seem to care luckily but its super hard to enjoy it when you feel that way. I've also had mild vulvodynia for the last two years which for the last couple of months has been mostly gone, couldn't tell you why it started or why its gone now. Maybe because I gave up fruit for the most part and it was high in oxalates, I take calcium citrate every day and mucinex every day all which are supposed to help that too. I absolutely can't ride a bike anymore if causes me so much discomfort. I gave my bike away. I try and explain to people it makes me super sore and they look at me like I'me kinda odd!
So I guess I'm trying to say there is a wide variation in both severity and symptoms.
Maybe just start with cutting out the biggies and work from there by seeing if it even makes a difference for you. Coffee, tea, chocolate, tomatoes and anything they make, artificial sweeteners, carbonated drinks, fruit juice and citrus fruits, spicy food, alcohol. Try it for a couple of weeks and see what if any difference it makes.