Interstitial Cystitis Advice

Hi Michelle,

A warm welcome to ICadvice! I am so very sorry to hear about the horrendous experience that you have been having when it comes to getting help with your IC (or let getting alone an IC diagnosis). I'm afraid that I don't have any Australian medical experience (North American and European, but not other parts of the globe), but I can offer you some thoughts which may help you and answer some of your queries. (I'm not a doctor or medical professional though dear, just an ICer with lots of experience.)

It's hard to judge - even if all of your symptoms point towards it - if you have IC without more accurate testing (a urine test doesn't show IC, it shows bacteria and IC has not been found to be of bacterial origin) being done. There is always the chance (until proper examination and testing is carried out) that your bladder symptoms are not IC, and so it's very hard to say if Elmiron would have any affect on you (plus, it's a good idea to remember that Elmiron only helps about 30-40% of those who try it).

I can't rightfully begin to tell you whether or not to get the prescription filled, but I can assure you that while a small percentage of ICers experience temporary hair loss (it usually stops when the med is continued or after a few weeks), liver problems are even less common. Personally I've been on Elmiron for over 3 years. It took about 3-4 months before it started to have any affect on my bladder, and while it doesn't make a huge difference in my symptoms, it does help enough so that I feel it warrants its high monthly cost. I know (I've been in similar shoes) that you're likely feeling "desperate" for help, but I think that what is a greater risk than potential side effects, is taking a medication for a condition that you do not necessarily (again, you very well may have IC, but just for the sake of argument) have.

I don't know what part of the country you live in, or all the details of your situation, but I can assure you that there are definitely some doctors in Australia who know about and treat IC. Is it possible to get a referral from your GP to see a urologist or gyno-urologist? It that doesn't seem all too likely, consider if finding a new doctor would be worth your while (chance are that it would be). If that fails, try printing off IC medical literature from very credible sources (I can give you some links, if you need them) - including medical studies - and brining them to your doctor. It is inexcusable and extremely outdated for any physician in this day and age to not be aware of IC and it's severity. Sometimes though, I've found, doctors need you to guide them towards better understanding.

Without even talking about IC prescription drugs, there are some things which you can begin to do on your own which (if you have IC) may bring you some relief. For starters, a lot of ICers are helped by following a diet which excludes certain foods that are well known amongst those with IC as provoking/worsening our symptoms. While each ICer has his or her own list of "bladder offenders" common problem foods include tomatoes, citrus fruit, caffeine, coffee, tea, soda pop, hot spices, chillies, MSG, artificial sweeteners, chocolate, cranberries, alcohol, aged cheeses, smoked products, most tropical fruits (ie, pineapple, kiwi, star fruit, etc), soy products, raw onions (some people are okay with cooked onions), and foods which are heavily laden with artificial ingredients. By eliminating or greatly reducing their intake of certain problem foods, many ICers notice that their symptoms not only do better on a day-to-day basis, but that they also experience less symptom flare-ups (times when you're symptoms become worse than their daily levels). Here is our step-by-step guide to the IC diet: Interstitial Cystitis diet information guide

As well you may want to try wearing clothing which does not put pressure on your abdomen/bladder area (like tight waistbands, heavy belts, pantyhose, tight nickers, etc) as this can be a source of added bladder discomfort. Trying to get enough sleep (I promise you, I know that is infinitely easier said than none, especially when you're waking to void all the time), avoiding overly strenuous physical activity, drinking good quality water (tempting as it is to not drink much when you're already voiding so often, you can potentially do more harm than good by not drinking enough water) can help to "dilute" your urine and also help prevent dehydration, taking small rests/sit down breaks through out the day, doing soothing activities (meditating, getting a gentle massage, listening to tranquil music, talking a short walk outside), using a heating pad or using an ice compress (wrapped in a cloth or towel) on your bladder area (or wherever it hurts most), and talking or writing about your experiences all have the potential to offer some relief (or the sort which doesn't come from a chemist's shop).

In terms of the pain which can accompany and/or follow love making, I am extremely familiar with that, as are many ICers - but the good news is that there are things which you can try that may help with the problem, because of course, as adults, we all want to have be able to make love with our partners. This article goes into depth about things that can help when it comes to sex: Sex and IC, the real deal

I really and truly do encourage you to read through the articles on this site and elsewhere on the web, but also to persistently seek to find a doctor (or team of doctors) that can provide you with the crucial help that you need to get to the bottom of what is causing your IC symptoms and then to provide you with a slew of treatment options. There is only one national IC support group in Australia that I am aware of. Their contact info is:

Interstitial Cystitis Support Group of Australia
Chairman: Alice Terry
P.O. Box 767, Kingswood
2747 New South Wales
Australia

(Web site) ICSG

As well, these doctors have also been globally recognized within the IC community as having a reputation of treating IC patients:

Peter L. Dwyer, MD
13 Brunswick St.
Fitzroy Victoria 3065
Phone: 613-9416- 02469

Helen O'Connell, Urologist
Department of Surgery Royal Melbourne Hospital University of Melbourne
Suite 12, Private Medical Centre
Parkville, 3050 Victoria
Phone: +011-61-3-9347-991

Anna Rosamilia, MD
13 Brunswick St., Fitzroy Victoria 3065
Phone: 61-3-9885-6642

You are certainly not alone Michelle, and moreover, you are definitely experiencing bladder symptoms which are very real and very valid. Please know that you can ask anything on these boards and that this site exists to help provide you with information and support so that you never have to feel alone with IC again.

Healing hugs and support,
Jessica

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Jessica Cangiano: ICadvice.com creator and administrator

I have IC, but IC doesn't have me!