What I know about interstitial cystitis

04/11/2011 at 7:27 pm | Posted in Uncategorized | 12 Comments
Tags: , , , , , ,

Disclaimer: This post should not be taken as a comprehensive overview of interstitial cystitis, and it isn’t medical advice & isn’t meant to diagnose or treat any disease. There are a lot better resources for IC than this blog, if more information is what you’re looking for.

What I know about interstitial cystitis –

From the National Institues of Health / National Medical Library:

Interstitial cystitis (IC) is a condition that causes discomfort or pain in the bladder and abdomen. It is far more common in women than in men. The symptoms vary from case to case. Some people have an urgent or frequent need to urinate. Women’s symptoms often get worse during their periods. They may also have pain with sexual intercourse. [More @ the link.]

From the Interstitial Cystitis Association:

Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). [Click link for more.]

From the Interstitial Cystitis Network:

Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS), is a condition that results in “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.” (2009 New American IC/BPS Guidelines).The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). [Go to main site for more.]

So why am I bringing this up now?

I recently went through a life change which I remain evasive about describing. What you need to know is that this change has put me in a position where I have to face the fact that my own urinary habits are causing significant problems for me and my loved ones.
My urinary frequency and urgency is not normal. We’re talking, using the bathroom upwards of 10, 20, 30 times per day, and anywhere from 2-10 times per night. On bad days I may have to use the restroom multiple times per hour.
I do not have urinary incontinence – I just have to go, now. In fact, excuse me —
— *ah* much better… For awhile…

Now seeing as this is a health problem connected in some way with my urogenital tract, unfortunately I suppose I need to pre-empt the ubiquitous question, “Have you considered the possibility that it’s normal for you??? How would you know???” with a response of, “Yes I suppose peeing excessively is normal for me, but it’s certainly unusual enough so that I’ll clearly stand out in comparison to the majority of people. Furthermore based on what I’ve gone through already, you don’t want to be out on the town with me and I don’t want to be with you because you will lose your patience after a few rest stops.”

I don’t know anyone else in meatspace who experiences urinary urgency and frequency to the degree that I do. I think it’s time to investigate the possibility of interstitial cystitis and similar conditions on top of my other pelvic problems.

For me urinary frequency and urgency is a long-term problem. Growing up, my parents and teachers disciplined me for using the bathroom so frequently, which just made things worse and pushed me further into denial. As I grew up, it just never got any better. When I was getting physical therapy for the pelvic floor dysfunction though, the urinary symptoms improved a little.

When you have urinary frequency and urgency, it can be a red flag a couple of other chronic conditions, like diabetes. Diabetes hasn’t been ruled out or looked into. But I’m not sure it’s even worth looking into, since I don’t have most of the risk factors and symptoms of diabetes. Another possibility I should rule out is thyroid problems, which are also associated with frequent urination – though again, I don’t meet most of the risk factors or symptoms for hypo- or hyperthyroidism. (At least, I don’t meet the criteria yet – I do have a family history of thyroid disease so I need to be alert for that down the line.)

But I do have co-existing pelvic floor problems… it just seems like too much to be a coincidence. Maybe I should look at related pelvic problems instead.

According to popular IC resources, I have more of the symptoms for IC than I do symptoms for diabetes or thyroid conditions. Other chronic condition (vulvodynia (and vaginismus/PFD)) – check. Chronic urinary frequency & urgency – check. Symptoms worse before period – check. Sexual pain – check.

A complication folks with IC may face – Disruption of social life – check. When I know I’m going to be in transit for a prolonged period of time, I have to consider the availability of a rest stop. If I don’t expect to find one, I have to strictly limit my fluid intake – or else not go out. I have missed out on some social interactions because I knew that I wasn’t going to be able to control my urinary urgency – and I was afraid of the physical discomfort or being made fun of for it.

I’m at the point now where I can’t eat or drink anything for breakfast at home if I know I’m going to be out and about a little later. Because the food & drink I like will make me pee. Repeatedly. The morning commute isn’t long; however, there aren’t many rest stops along the way. Stopping to use one of the few facilities will disrupt the commute to the point where stopping isn’t worth it. The city where I live is relatively accessible for people with mobility disabilities – but significantly less accessible for people with bladder problems. (I can’t help but notice that the nearest IC support group is located in a smaller town outside the main city.) Everywhere I go there are signs posted in windows that say “No public restrooms” “No restrooms” etc. And the publicly available restrooms are spaced far apart, often with limited hours. Most shop keepers let you use the rest room if you are a customer – but even then the facilities are often kept under lock & key. And so far since the life change kicked in, I have been to one business that flat-out refused to let me use the restroom during an emergency – even though I was a customer. Since that event, I reviewed restroom tips on the IC help site, downloaded some recommended bathroom finder apps to my mobile device and watched a helpful YouTube video about travel tips for folks with IC, (no transcript) hoping to get advice on how to deal with too much pee.

The challenge is that I don’t have one of the most commonly reported symptoms of IC – pain.

The only times I’ve had pain with urination have been when I had an actual urinary tract infection. There have been only a handful of times when I’ve had bladder pain – all of these times happened when I was in transit somewhere and whoever was doing the driving could not or (or in some genuinely malicious cases, would not,) find a place to stop and go. I know what bladder spasms feel like.

I feel pressure when I have to urinate… discomfort… but it’s only crossed the line into pain a few times, usually for reasons I could pin down.

So without this important symptom, pain, I don’t have as much of a motivation to go to the doctor to seek a diagnosis in the first place. Even though I know there is not one way that all people with IC act, even though I know that symptoms vary from person to person, I still have this uneasiness about even entertaining the possibility of IC. It’s denial – how dare I consider possibility that I have a chronic health condition; it’s not really that bad, right? Then comes the internalized messages from my teachers and family, that it’s all in my head; I just think I have to pee.

Still, without the pain symptom, I don’t know if I would meet the criteria for IC. I might have something else like overactive bladder. Or I could just chalk the urinary problems up to my piece of shit pelvic floor. (Or maybe my teachers were right and it really is all in my head and I just think I have to pee and all I really need is discipline. At age almost 30 *rolls eyes* Or maybe I’m just one of those people with a “Small bladder.” You know, just like how lots of folks with vaginismus have a “Small vagina.” Not really, most of the time. It can happen, but it’s fairly rare.)

The other problem is I am absolutely terrified of some of the tests usually used to diagnose IC. The cystoscope, in particular, makes me want to crawl into a hole and never come out until the doctor goes away. (Except that I’ll eventually have to come out, because I will have to pee.) There are other, less invasive tests and procedures that can be used to diagnose or rule out IC, so I may be able to find something I’m comfortable with, eventually.

But even if I do investigate IC and get some kind of diagnosis, whether with IC or another health problem, there may not be much I can do about it. As with vulvodynia, there are treatments but no real cure for IC. It’s another long-term, chronic condition, so if I have it, realistically I’ll just manage it on my own with some non-invasive lifestyle & diet changes or with some medical tools. Likewise with diabetes, thyroid disease or overactive bladder. After almost 30 years like this, I it’s hard to imagine ever not having to pee at any given moment.

So I am not saying that I have IC. I don’t know. I have something I need help with and need to investigate further. And providing some links for reference – yours & mine. It has been going on for awhile, but I was able to ignore it until now. I can do so no longer.

Advertisements

12 Comments »

RSS feed for comments on this post. TrackBack URI

  1. Oh how I hate it too. I pee upwards 20 times a day and it’s tiring. I have vulvodynia too so I’m not surprised everything is wrong with my pelvic floor. Trying to take a dump can be a ride lol.

    I worry about the IC tests too, any injury to my urethra makes my vulvodynia 10x worse.

    • I peed 15 times last night! I barely slept!

      It’s like, physically tiring!

  2. My cystoscopy was pure torture — and I have no idea why the doc didn’t quit when he saw so — but I only had Lidocaine as anesthetic, and I know they do it with partial and total anesthesia. I’m saying this to encourage you to get a cystoscopy, I guess, but then again, like you say, will it tell you anything useful?

    Your frequency sounds like a royal pain in the ass!

    • Yeah that’s pretty much what I’m afraid of. At this point, without pain, I haven’t crossed a thresh hold that would push me over the edge & make me seek out the temporary pain of an exam in order to address the long-term pain of just tryin’ to get by. Not that I want to ever feel bladder or urethral pain.

      It is a pain in the ass! I don’t mean to inconvenience myself & my friends when we go out but I haven’t in all my life been able to figure out a way to make it stop – other than making myself real uncomfortable by not eating & drinking.

  3. I know someone with this. I didn’t want to pepper her with a bunch of intrusive questions so, thanks for the information.

  4. For what it’s worth… most of the sources I trust say that mild IC is probably vastly underdiagnosed. And I’ve read a few websites by doctors suggesting that much of what gets diagnosed as “overactive bladder” is actually a form of IC, just without the pain. It definitely sounds like getting checked for it is a reasonable thing at this point.

    My symptoms have waxed and waned really strangely over the years. Sometimes urinating hurts, sometimes it doesn’t hurt at all. When I was first put on Elavil, it almost felt like my urethra went numb during urination– I hardly felt anything at all, pain or otherwise– but that effect decreased with time. One thing it has been helpful with, though, is the feeling of urgency; I can usually get away with only getting up to use the bathroom 3 or 4 times a night at my current dose, most of it before I fall asleep or after I wake up. (Benzodiazepines like Valium and Xanax can also be helpful during flare-ups, because they act as muscle relaxants. There are several camping trips I would never have gotten through without them.)

    The thing is that for the first four or so years of my IC symptoms, I didn’t have frequency, just pain. And some diagnostic criteria insist that both pain and frequency have to be present, so I wouldn’t have qualified as a teenager. Over time the frequency increased, and the pain sometimes goes away. I’ve also been through phases where I had back pain every time I needed to urinate, or nausea. And I’m convinced that all of these weird little fluctuations can be features of some people’s experience of IC– especially if someone has other existing pain conditions, because pain feedback loops can do some really weird stuff– but I wouldn’t dare tell a doctor about most of them, if I didn’t think the doctor was genuinely an experienced expert on IC and had worked with lots of cases, because I am so afraid of getting an “oh you hysterical wimmins” reaction and therefore not being taken seriously. I just stick to mentioning pain and frequency.

    This is maybe getting into TMI territory, but I had problems with my pelvic floor muscles on and off throughout high school, before I started getting what most people would see as “official” IC symptoms. Basically, when I tried to hold it in for too long, I’d get to a point where I couldn’t control my pelvic floor muscles any more and would just wet myself. I used to have to wear sanitary pads when I didn’t have my period to cover up the fact that I was still wetting my pants. Over the years, as I stopped trying to hold it in so much, I got to a point where I could feel my body giving off “you have to go pee NOW” cues, but for a while, the “warnings” would still sometimes come just a few seconds before my pelvic floor muscles just let go.

    I do remember noticing as a kid that when other girls went into the bathroom, they seemed to pee more than me and for longer than I did, even girls younger than I was. It wasn’t something I went out of my way to listen to, just something I couldn’t help noticing in public bathrooms and such. And at that age, I wasn’t having any bladder pain symptoms, and only occasional urethral pain that didn’t seem directly connected to urination.

    I have been lucky enough to find a doctor who believes me about the IC, but said doctor is also not a urologist and thinks I should be seen by a specialist for the best treatment. I’m still trying to work up the nerve to go to one, especially since my only experience with a urologist up till this point was awful. I’m also terrified of having to get a cytoscopy. There was a time when I had worked myself up to a point where I would have been willing to go through with it, if done by a doctor who seemed like they knew what they were doing, to get proper treatment, but… my horrible experience with that one urologist basically scared me off for years. I know some doctors will diagnose just on the basis of symptoms, without insisting on a cytoscopy, and I’m trying to see if I can find one like that (because after tracking my symptoms for the past 14 years and doing my own research, I’m completely certain that what I have is some form of IC).

    • I’ve overheard other women’s urine streams far outlasting mine as well when I’m using a public restroom. I don’t know how they do it!

      I’m reading the Secret Suffering book, and in the end, there’s this appendix that talks about interstitial cystitis and some ways that patients and doctors can evaluate whether or not it’s a possible diagnosis. I don’t know how reliable the information described is, since this section was written from the perspective of 1 doctor, but I found some backup for why he was selected when I googled the name. (it’s this guy. There’s a transcript of an interview with him on the IC network page.)

      According to this Dr. Persons, one of techniques described as a possible way to diagnose IC is, a potassium sensitivity test. Just from glancing around it looks like he’s big on this idea of potassium sensitivity in some folks with IC. So he’s got this short survey for patients to answer, which, I think is not necessarily the best place to start because if the survey is so quick then is it too quick, you know? But anyway, this appendix describes a way to diagnose IC as injecting potassium directly into the bladder. The problems are that the potassium sensitivity test is still fairly invasive, requiring catheterization & it could be painful, plus it can still misdiagnose people.
      The survey is designed to replace the potassium injection step, the thought being that if you scored high with the survey, you’d probably score high on the potassium test anyway. So now I’m wondering if I could likewise find a doctor who would be willing to work with me sans invasive stuff. But then again even if I do what exactly are we supposed to do about it? I’m too new at this IC stuff to figure out how to manage it, if indeed I have it at all. Which I don’t know.

      (I don’t know how this would work but now I’m thinking to myself, why not make it so that instead of a direct injection, a patient could just drink a high-potassium solution?)

  5. hello, i’ve been recently diagnosed with vulvodynia, but for a long time i thought i only had urinary/bladder problems. At first i did have some UTI, but then i was peeing every half an hour and no bacteria was found in the urine. I was desperate and frustrated, and nothing seemed to work, a couple of doctors suggested the cystoscopy, which having the pain i had (because at this point my vulva was in fire, something that I did not have at the early stages of the problem when I only had recurrent urination, no pain either), i refused vehemently. So I tried many things… to make the story short, I asked my gyn to test for bacterial and yeast infection, he had not done this because I did not have any usual symptoms of a yeast/bacterial infection, I had no discharge or itching (anyway, I recommend everyone to ask their gyns to do this tests at the pap smear, if you don’t ask, they don’t usually do it). When the results came back I had yeast and a bacterial infection (staph, which the doctor said is not bacteria usually found in the vagina). So I took a course of antibiotics along with about 25 days of boric acid inserts and probiotics… while my vulva is still on fire and achy, my urination problem is gone, I still urinate more than other ladies, and is probably because of the vulvodynia, but I do not pee at night anymore, and much less than before during the day. So maybe you can try checking if you have a bacteria or something. Also, I have noticed that when doing physical therapy for vvd I feel like peeing more, and it is not because my bladder is full, but because the physical therapy stimulates some nerves around, so I have found using castor oil packs soothing for night time. I hope you feel better soon

  6. I’ve considered myself to have mild IC for over 15 years now, since I was about 8 years old. I saw a urologist when I was young but they didn’t test specifically for IC so despite the icky test I had, I still had no diagnosis. What has saved me is natural remedies. My mother found acidopholus, which is essentially highly concentrated yoghurt bacteria. Please, please try it! It’s utterly saved me. You can buy it at most health food stores, I live in Canada and can usually find it at a variety of stores, even some higher quality grocery stores have it. You can get also suppositories (my mom uses these). The best brands that I have found for acidopholus are ‘Natural Factors’ and ‘New Roots’. There are two different types of acidophlus, enteric coated and regular – I believe this just refers to the coating on the outside of the capsule, and I prefer to take both types to balance eachother out. The only side effect anyone has ever found (I have put many many friends and family on this remedy) is looser stools – sometimes very very loose if you take too many, so be careful when you first start taking it, and when you make changes. The enteric coated type will have more of this effect on you. You should look for high dosages of the bacteria, such as 10 billion, and it’s better to have a variety of types of bacteria in it as opposed to just a few – though I don’t know what options you will have. Don’t let anyone tell you that acidopholus that is not kept in the fridge is just as good as the stuff which needs to be kept in the fridge – it MUST be kept refridgerated at all times! I take a lunch bag with freezie packs in it when I need to travel with my acidopholus.

    Several other IC types – I don’t know what you know about the diet component it, but I follow three strict rules which are very very very helpful for me. We call the the Three C’s – don’t consume any Citrus, Caffeine, or anything Carbonated. Once you this this under control you might be able to find that you can have a little chocolate or sparkling wine, but it sounds like you have a rather severe version – I’ve never had to deal with anything like your type of frequency. Alcohol and spicy foods are also triggers for me, though I was never much into either anyways.
    I would also recommend going to see a naturopathic doctor – they will not recomment painful tests until they have exhausted ALL other options. I’ve been living relatively comfortably with IC for years, and have seen naturopaths that have agreed with my self-diagnosis and we don’t see any reason to get any sort of confirmation from the standard medical world. I recently saw one (for a different issue), and upon hearing about my IC – my main complain at this point was frequency – she put me on a natural substance called “Slippery Elm”. I take three 400mg pills twice a day, and my frequency is much reduced. I can pretty much get away socially with saying I have a tiny bladder, and it’s been much less distruptive.

    I really, really would recommend that you see a naturopathic doctor. It may take a few times to find a good one, but once you do, whether or not you determine that it is IC that is plauging you, these types of doctors are MUCH better equipped to help you with these issues. None of this skeptism or badly concealed eye rolling that is really Not what we need to deal with on top of everything. If you live in a rural area or small town it might be difficult to find a naturopath, but it would be worth travelling for, I promise! Look for doctor who specializes in women’s health or immune issues, as IC at is core is an autoimmune disorder. GOOD LUCK! I so hope that you manage to get a handle on your challenges. I would love to hear back if any of this is helpful:)

    • have you used the New Root Probiotics as suppositories? I’ve been looking for probiotic suppositories, but I haven’t been able to find them, and I’d like to here the experience of someone that has used them. Please let me know Thanks sooo much

      • No I never heard of these things before. Are these suppositories or pressaries? Or does it matter.

  7. I have the exact opposite problem. I have been diagnosed with IC via cystoscopy, but my only symptom is years and years (literally as far back as I can remember) of pain with urination. I do NOT have symptoms of frequency, though on occasion urgency can be an issue. But I think I’ve also psychologically trained myself to limit my water intake severely to avoid the pain of a full bladder and/or urination. When I saw a urologist about this, the first was baffled. The words “I’ve never heard of something like that” were actually said. The second urologist told me it couldn’t be IC due to the lack of frequency/urgency. Then a third urologist did my cysto and confirmed that yes, I do have IC.

    Point is, not everyone is going to fit the profile for a disorder perfectly. That doesn’t mean you don’t have it or that your issues are not valid. They are interfering with your life. You need to see a doctor.

    As a side note, one of the treatments for IC is an antidepressant. So many people with IC become homebodies for exactly the reasons you’ve detailed here, and they suffer severe depression as a result. Thankfully, my lack of frequency prevents this from being the case with me, but you need to take care of this! Good luck!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


Entries and comments feeds.

%d bloggers like this: