Interstitial Cystitis?

[kerrilyn]

I know quite a few people on this forum have Interstitial Cystitis and I was wondering must you always have frequent urination to have this? I've had some different/intense pelvic pain for about 1 1/2 years now and I read about IC early on and thought that wasn't it, now I'm not so sure. I know I definitely don't want it!

I've been diagnosed with endometriosis, a recent pelvic CT scan showed a fibroid or two. The report was somewhat vague and my GP just says everything is fine. Yeah, fine! I have fibro and vulvar vestibulitis, so IC fits right in there too or generalized vulvodynia. The pain is low in the pelvis and radiates to my back and rectal/vaginal areas. It aches/burns mostly with occasional stabbing and pressure feeling in the bladder area. I took a T3 and it doesn't do anything to relieve the pain, neither did percocet except make me tired or nauseated. The pain often seems to bring on a headache or a migraine. It is driving me insane!!!!!

It's flared up the last couple days and interestingly enough I drank Poweraid both days. I've read that artificial sweetners can aggravate IC. I also read that B vitamins can aggravate IC (which I've been increasing) - what do you do if you are low in B vitamins and have IC?

There is pain and frequency when I urinate during these painful episodes but not when it's not flared up. Would that alone rule out IC?

 

[HopingSince88]

My daughter has IC and does not have frequent urination. The pain you describe does sound like what she describes. She had a scope of some kind inserted and they found lesions inside the bladder, which is how she was diagnosed. I think prior to this test she had her urine tested and a certain level of mast cells were found. This was a decade ago, so my brain is a little foggy on all the details.

 

[camas]

Sorry to hear that kerrilyn.

When my IC was bad, I didn't have any referral pain. It was clearly in my bladder and often excruciating. The feeling of urgency was also constant. If I remember correctly, the only time you don't feel pain with IC is while you are actually voiding, whereas with a bladder infection it hurts to go. I think the only way to know for sure is to have a cystoscopy unless they've developed a better test in the last 20 years.

A lot of folks with CFS also have problems with their sacrum which can cause referral pelvic pain too.

Edit to add: A book that really helped me was You Don't Have to Live with Cystitis which had a whole section on IC. Maybe there's an updated version available.

 

[lululowry]

I've been diagnosed with endometriosis, a recent pelvic CT scan showed a fibroid or two. The report was somewhat vague and my GP just says everything is fine. Yeah, fine! I have fibro and vulvar vestibulitis, so IC fits right in there too or generalized vulvodynia. The pain is low in the pelvis and radiates to my back and rectal/vaginal areas. It aches/burns mostly with occasional stabbing and pressure feeling in the bladder area. I took a T3 and it doesn't do anything to relieve the pain, neither did percocet except make me tired or nauseated. The pain often seems to bring on a headache or a migraine. It is driving me insane!!!!!

This sounds like IC to me. The only thing that helps that kind of pain for me is Tramadol.

It's flared up the last couple days and interestingly enough I drank Poweraid both days. I've read that artificial sweetners can aggravate IC. I also read that B vitamins can aggravate IC (which I've been increasing) - what do you do if you are low in B vitamins and have IC?

I cannot under any circumstances drink anything with articifial anything - sweetners, colors, additives, anything. The only things I drink are water, herbal teas (tannic acid is a killer) and low acid coffee (cold filtered). For b-vitamins, I do smoothies with lots of spirulina, Pro-greens, and green leafy veggies, plus Folapro (there are lots of good threads here on B vitamins) - Poweraid is not a good source.

There is pain and frequency when I urinate during these painful episodes but not when it's not flared up. Would that alone rule out IC?

I don't think this rules out IC. I don't have pain when I urinate but I know many folks who do. I have no pain or frequency when I don't have flares.

 

[Frankie Dene]

I have IC too - it seems it is partly related to having ME/CFS. I have found a good treatment after going to a specialist - he gives cimetidine which is H2 an antihistamine or loretadine (another antihistamine) - and I see that cimetadine is a drug that some experts use for CFS so I'm staying on that one. I also take a pill called bio-cysto which does seem to work (at great expense) it has stuff in it that is supposed to help and it certainly does me. I also looked up the IC foods to avoid on the internet and unfortunately they are all ones I love - especially chocolate, tomatoes and coffee, fruit drinks etc. I suggest you look it up and avoid them and see how it goes - it certainly has helped me - IC flares up periodically and I go back to being careful and it eases.
Good luck

 

[Karin]

I've been completely miserable with interstitial cystitis, from 5 year old to 18 year old. I've had everything done, cystoscopies, renal function scintillography, tried many medications, never had any success. I never had bacteria showing in culture. It all ended finally after a new urologist tried injecting colloidal silver solution in my bladder (through the uretra) twice a week for a month. It did not work immediately, but after a couple weeks I realized one day that the pain and discomfort were gone.

Now I am 40 and discovered something else three years ago: going gluten-free/casein-free decreased the amount of urination a great deal. So I am running to the bathroom much less, but it's not because I hold more, it is because I just seem to be much less thirsty, as if the diet has an anti-diuretic effect on me. Before the diet, any little stresses would result in a big diuretic effect where my bladder would fill up really fast and I would be very thirsty. My autistic son has the same issue now (even though he is GFCF too), each time he is excited or nervous (even just going to ToysRUs), he needs to pee every 10 minutes, big volume. But this is another issue than interstitial issue, this is more of a bervous system issue I guess. Just thought I would mention it though.

 

[camas]

I also looked up the IC foods to avoid on the internet and unfortunately they are all ones I love - especially chocolate, tomatoes and coffee, fruit drinks etc. I suggest you look it up and avoid them and see how it goes - it certainly has helped me - IC flares up periodically and I go back to being careful and it eases.
Good luck

Avoiding that long list of food helped me too. The only thing I've found that will still cause me to flare is avacados, of all things.

 

[kerrilyn]

Thanks everyone. I guess I can't rule it out. I'm going to pay more attention to what I eat/drink and avoid the IC flaring foods (all the ones I like!!!) and see how it goes. I was good yesterday till I took some Vit C. It wasn't horrible but the familiar feeling was there, and luckily subsided again. ....ugh.... I was so hoping not to add IC to the ever growing list of issues.

 

[Karin]

Yep, vitamin C does that to me too.

 

[helsbells]

Hi the diet is the single biggest thing which helped me get my pain under control especially given i suffer with meds, i can't take vit C for other reasosn but ok on the bladder as as I got it buffered - the big thing not to get confused with is Cranberry juice that will really flare but well meaning people may tell you to take it as its supposed to help with bacterial cystitis. MSM started on on another thread recently is supposed to be good for IC - I am struggling re intolerances to take it (I have many) but some people on the IC boards think it helped. Educate yourself about the diet and then reintroduce foods one at a time you may find you can get away with one or two - there were a couple of things I wasn't supposed to tolerate but managed - others had a horrible effect and some still do. If pain gets really bad I found the klonopin which I was taking after reading about cheneys use for quite another reason quite good - If you are having an immediate flair drink bicarbonate of soda dissolved in water to alkanise the urine this will help a little bit and good luck.

 

[kerrilyn]

When I had the big flare up on the weekend, besides drinking Powerade I was drinking cranberry juice. D'oh!!

The other thing I've noticed is that I don't have this pain in the morning. When it first happened it was a primarily only at night (kept me up all night), then started in the evenings but recently even in afternoon. I don't eat until mid-day usually or later so it's possible that by then the time foods/drinks are processing, then I have pain. hmmm

Is there a hormonal component with IC? Any time in the cycle when it's worse? I've found this pain worse the week after my period until ovulation, and some towards the end of the cycle too. I don't notice it during my period, I have other pain then so maybe it's masked then. And I honestly haven't paid attention to it in relation to diet until now so the next month may give me more insights.

EDIT: May have found the answer to my own question: http://www.ic-network.com/iclifestyles/march02.html
"There is no set pattern for symptoms in IC patients. There are patients who experience an increase in swelling, pressure, pain, and frequency when estrogen levels are highest. This is believed to happen because estrogen increases mast cell secretion, therefore increasing inflammatory reactions."

"Some IC patients say they feel best and experience less symptoms during their menstrual period when hormone levels are low. "

My pain is ALWAYS worse when estrogen is highest in the cycle, that much I knew. But I didn't realize that estrogen also thickens the lining of the bladder too. I kept looking into gyn problems for this pain but really the pain is exactly where the bladder is. My excess estrogen has never been my friend.

Ok, next question: Do you notice this pain intensify with standing? I mean there just is no comfortable position but I think it's gets even a bit worse when I stand up for a short period of time.

 

[helsbells]

Not especially for me kerrilyn but from spending many hours perusing IC boards a few years ago there is no set answer, it could be a mix of many factors EG I have bladder pain and bladder burning when wrong thing eaten, urethral irritation, vulvodynia and a left pelvic pain which I have never been able to identify which can be set of by the bladder but also can have a life of its own, I think its autoimmune. Also as well as foods watch out for inhalants as these set of my bladder pain - VOCs, formaldyde etc Are you somewhere different as the day wears on for example, exposed to new paint smells, new carpets I remember someone saying they always got set off from the smell of the photocopier toner. So for me there were/are two components there are the foods a sore bladder won't tolerate generally but not only those with high acid content (there are some other factors like aged or smoked foods ie mature cheeses or tofu, smoked fish) but also the allergic response for me that was inhalent chemicals and some foods. i do remember I couldn't wear jeans for a while because of the pressure although I do now.

 

[kerrilyn]

Are you somewhere different as the day wears on for example, exposed to new paint smells, new carpets I remember someone saying they always got set off from the smell of the photocopier toner.

No I'm not, but that's interesting because I have MCS too.

i do remember I couldn't wear jeans for a while because of the pressure although I do now.

YES! Even on a 'good' day, any sort of pressure there is a problem. When it really flares up I can't tolerate anything touching my skin, even underwear. Everything has to be off and I find a ice pack sometimes helps. It numbs the area at least.

 

[camas]

"Some IC patients say they feel best and experience less symptoms during their menstrual period when hormone levels are low. "

Ok, next question: Do you notice this pain intensify with standing?

That was my experience on both counts. Although I believed my IC flared when my progesterone levels were high. I was unable to take the pill because of IC. As I've aged and gone into estrogen dominance, my bladder has continued to improve.

I would have slightly less pain if I laid in bed or tipped back in a recliner. I assume it was just taking pressure off the trigone area.

Cranberry juice. I'm having sympathy pains for you.

 

[kerrilyn]

I would have slightly less pain if I laid in bed or tipped back in a recliner. I assume it was just taking pressure off the trigone area.

I've found laying down and doing a pelvic tilt helps a tiny bit. I've had a lot of pain in various areas from various things as well as all over fibro pain but I gotta say this pain is the worst. HATE IT.

My mom has the frequency problem and I read about IC mostly in regards to her, but she doesn't have much pain. I have the pain without frequency (except certain times of the month there is urgency), put us together and we are probably the 'classic' IC patient. She has distinct food intolerances, like acidy foods cause sores in her mouth. I'm sure I have food intolerances too but they are less defined and I'm not very observant to relate X and Y easily.

I really wish I hadn't dismissed the possibility for myself so quickly. You all have taught me a lot from this thread and I'm so glad there MAY be a way of lessening some of the pain through diet. Thanks!

 

[camas]

You're welcome, kerrilyn. Hope your bladder feels better soon. :Retro smile:

 

[helsbells]

It goes without saying 100% cotton underwear washed in non scented/allergy detergent, I prefer ones without rough seam at the front of the gusset as this seems to irritate so buy slightly more expensive ones where the seam is double folded, use as little soap as possible and stick to natural unscented stuff. I have all kinds of pain but this pelvic stuff was the worst!! Are you in America? You can get the pure MSM gel over there you could try using that over areas of pain to see if it improves it.

 

[Resting]

Yep, vitamin C does that to me too

I might have misread this vitamin C comment. But if it meant it worsens your symptoms, try
buffered vitamin C it made all the difference in the world for me.

They are still doing the hydro-distention tests where you are under general anesthesia and they stretch your bladder with water. Taking pictures before and afterward can show the bleeds in the bladder that confirm the diagnosis. This is painful and not recommended if it can be avoided.

I take Elmiron and Atarax to help my symptoms. Bladder instillations didn't work for me. Way too painful and not at all practical particularly with the ME/CFS. I also added Bromelain and Quercetin (natural supplements to help keep the inflammation down). A low acid diet is key too.

My pain levels vary but my frequency at baseline is 1x per hour. Up to every 10 minutes upon a flare. Urgency is always a part for me too and of course, night time frequency.

There are GYN's that also treat for IC. So you might kill two birds with one stone, getting pain relief for all types.

 

[leela]

I've had bladder symptoms for as many years as I've been ill, though I've never gone to a specialist and gotten a diagnosis.
The problem with specific Dxs is they are averaged to what the general population presents with, don't necessarily take into account the individual, and don't always
take into account the other conditions they may have...(I personally almost never present typically, even with specific pathogens.)

What I'm trying to say here is that I have most (but not all) symptoms of IC, or Irritable Bladder, or persistent vaginitis, or vulvodynia--and I've decided I don't really need to know what the Dx is. I chalk it all up to the generalized inflammatory state that comes as part of the package with ME/CFIDS, just another area that is being aggravated by the long reach of the illness. I guess I take this stance, though, because for me the IC symptoms are mostly a background process and only occasionally become so flared that I really have to pay attention. If you are having pain or other symptoms that really interfere, it would be worth seeking a Dx and treatment for that
specific condition.

 

[kerrilyn]

FWIW I have not had another flare up since I've made a conscious effort to watch my diet and remove acidic foods. So that is good, and gives a pretty good indication that I'm having IC issues. I haven't gone through the time of my cycle when it really flares it up, but if the pain is much less or (fingers crossed) nonexistent at that point, I'll definitely be convinced. It's been so nice not having that pain :Retro smile: