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"Positive Outcomes After My Three Year Struggle with IC"

By Jo (Submitted April, 2004)

I am 40 years old and was diagnosed with Interstitial Cystitis and Fibromyalgia over three years ago. Previous to that, I recall chronic UTIs from about the age of 18 but for the last few years, my life has been like a roller coaster ride, not knowing how severe the pain and symptoms of urgency and frequency may be from day to day and from moment to moment, and unable to make any plans for fear that I would never see them through.

The crunch came mid 2003 when, after consulting with six general practitioners in Australia (and in Europe) and four urologists, I was advised to take a medical retirement from my teaching career and to consider bladder removal. At that point, unable to work, I took leave to actively research this condition that has perplexed both the medical experts and myself. For the first time, four months on, my symptoms have been in remission and I thought it poignant to share why I think this is so.

Medication:
These have included all the usual treatments; antibiotics, anticholinergics, antispasmodics, analgesics, antidepressants, numerous Chinese herbal supplements … and Elmiron too. None have had any beneficial effect other than strong analgesics to temporarily relieve pain … combined with a long hot bath!

Some positive outcomes with dietary triggers!
After first discovering the IC websites I immediately went on an elimination diet in order to ascertain specific triggers. Although I’m sure this differs from one person to the next, the greatest aggravator for me has been high acid foods such as citrus fruits. Another line of my research has been to explore the relationship between histamine releasing foods and IC. From that diet, it became clear that red wine was a definite culprit and to lesser extents, many other foods such as oily fish and yellow cheeses.

Eureka! What has been most interesting has not been what I put in my mouth but HOW OFTEN I put food in my mouth. I have found that it is imperative to eat at regular intervals, perhaps a reason why Elmiron was ineffective due to the fact that it must be taken 2 hours after eating, and then one can’t eat for another hour after taking a tablet … effectively imposing a three-hour lapse between eating times. I’m not certain if there is a relationship between fluctuating blood sugar levels (and am not qualified to provide a scientific explanation) but now I find that if I snack between my three main meals, that I’m OK. Almonds are my preferred snack given they are filling and have a high protein content. My diet too is one mainly vegetarian, with none or little processed foods or food with artificial additives. Of note, there have been two occasions now when I’ve been so busy that I have forgotten to eat, and immediately the symptoms have resurfaced.

Pressure?
Any type of pressure applied to my bladder will cause a flare. Other than actively avoid tight clothing, tampons, I am still stumped why this is such a problem. And as for intercourse … thank goodness my husband is supportive and understanding.

Fibromyalgia
Not being superhuman like some people, I find that it’s almost impossible to combine exercise and chronic pain. Seemingly as a result, fibromyalgia developed to the point where every limb, every muscle in my body was stiff and ached … in addition to unrelenting IC symptoms. My short term memory was badly affected and had difficulty sleeping
more than 2 hours at a time from either needing to void or from the persistent muscle and joint pain. Gentle exercise, such as stretching and walking were critical for getting on top of this condition, combined with some herbal supplements such as green lipped mussel extract, glucosamine, chondroitin and magnesium. All is quite good now with the exception of stiffness in my fingers and the odd twinge.

Prospects … and hope for others
Early this year, by fluke, I read an article in a local newspaper about a Sydney Reconstructive Gynecologist named Dr Bruce Farnworth who is currently coordinating a clinical trial, (being funded out of Israel) for the implantation of a “miniaturo” device for women with Interstitial Cystitis. These implants, the size of a small cigarette lighter, is surgically inserted into one’s lower abdomen and acts by negating pain signals by the omission of electrical impulses. I met with Dr Farnsworth who confirmed the diagnosis that had been previously confirmed on four other occasions but was ruled out of the study as my bladder showed the typical glomerulations but lacked the Hunner’s ulcers of patients worse than myself. As a result of my procedure, Dr Farnsworth has discovered in consultation with a Texan doctor that with patients like myself that during hydrodistention that the bladder needs to be twice filled as the snap shots taken the second time around differ significantly from the first fill. I personally witnessed these images and was amazed.

Given that I shan’t be exploring the “miniaturo” option for the trial, Dr Farnsorth (who actively supports the work of the late American Gynecologist Dr Lee) is encouraging me to read about the relationship between IC and hormone imbalances. As a female who has had an “interesting” gynecological history, and has spent fifteen years on synthetic progesterone and five with an estrogen dominance problem, I am now looking at the prospect of natural progesterone cream to see if that can play any positive role in the maintenance of IC. The journey continues so hopefully I shall have even more information in another six months.

In a nutshell
• Eat nutritious food often, avoiding high histamine releasing foods and those with high acid content.
• Investigate the possibility of hormone imbalances and avoid synthetic hormones, especially estrogen!
• Wear loose clothing.
• Move!
• Be positive
• Question practitioners who insist on treating the symptoms and not the disease. We deserve answers and doctors need to start asking the right questions!

All the best in finding achieving positive outcomes soon,

Jo
Sydney, Australia

Revised: 3/01/05 - kj