Jeannine's Story

Disclaimer: Jeannine does not proclaim to be a medical authority. Any treatment options or medications should be discussed and monitored by your physician.

I always promised myself that if I ever had any success in healing Interstitial Cystitis that I would share my story and everything that I know about this disease to help others. I am extremely lucky to have attracted the information and resources that have led to my recovery. I have been completely IC free for over a month now. The reason that I am telling my story so soon is that I have information to share that is not commonly known by the majority of IC patients.
I will start by saying that I am a very unconventional woman, which is why I easily abandoned the idea of getting help from western medicine very early on. The medical doctors that I saw in the beginning about my IC related symptoms gave me nothing but pills and spent very little time with me (which is a common story). My symptoms started about 6 years ago this spring when I was only 20 years old. Like many others I was treated for a bladder infection with antibiotics and it did not work. I was convinced at the time that I must have some STD, but all of those tests were negative as well. That spring I also started having low back pain for the first time, and I was not taking very good care of myself. I went to Alaska for the summer still wondering what was wrong, but luckily the symptoms went away for most of that time period.

For the next 2-3 years I had other problems, including some very strange pelvic pain, as well as bladder frequency and pressure. My main complaint for most of that time was low back pain. I will sum it up by saying that I spent much of my early 20's convinced that I had a case of undiagnosed pelvic inflammatory disease and got tested for everything in the book about 50 times! I wanted nothing more than to take antibiotics and be done with it, but all the STD and bacterial tests were always negative.

I slowly began to do my own research out of sheer desperation. I tried EVERYTHING, and often worked 50-60 hours per week so that I could pay for my expensive herbalist and supplements. At one point I was taking 5 herbal formulas and 18 different supplements, and none of it was helping long term. I had some success with a chiropractor, but the bladder problems just kept getting worse. My sacrum was constantly inflamed and cracking. There was also a strange pressure weighing on my bladder that no one could explain, and vaginal pains and pressures that would appear off and on. These pains were amplified by the sexual issues that so many other IC patients have experienced, along with the shame and self doubt. There were times, mostly in the past year and a half, when I could not think about sex without hurting. Either my bladder would get overly stimulated with pressure or my vaginal and clitoral area would hurt. Many nights I would awake from strange dreams with my bladder actually in spasms and much pain in my genitals. It's difficult to discuss, but there really is a connection between sexual energy and Interstitial Cystitis that must be addressed. It was not until recently that I discovered what this connection was about.

The year 2000 ended up being the turning point for me because I finally found out about Interstitial Cystitis. I had been seeing a Naturopath for almost a year and was getting nowhere slowly. She was the first one to mention the possibility of IC to me, but she was never very informative and she gave me the impression that my options were extremely limited. I was very much in resistance to referring to IC as being the cause of my problems because of all the fear-based information out there that considers it to be "incurable".
My bubble of denial didn't really burst until I decided to get a "2nd opinion" and was finally diagnosed by a doctor who had IC himself! He was extremely pessimistic and had been suffering for 6 years with it. Here was a doctor who actually understood what I had been going through! He empathized with the emotions of despair and mirrored my defeating self-talk that I was a victim and never going to live a normal life. If you have IC for any length of time, you have or will most likely experience these and many other emotions for yourself. In this doctor I saw exactly what I wanted to avoid becoming, and I decided right then and there that I would heal.

I am going to share with you how I got better these past 6 months by summarizing the methods I used to become as healthy as I am now. I know that some or all of this information will help anyone with IC. I also realize that my case is an individual one and that it is only another example for you to refer to in your own process. I have come to believe that illness is only partially physical, and that each person must navigate their own emotional and energetic healing.

The real relief started when I found an Acupuncturist here in Portland whom I will refer to as Dr. J.G. He listened to my history and I mentioned the IC, but he told me to forget about that diagnosis. He said my problem was caused by excess heat in the pelvis and the term "Interstitial Cystitis" did not reveal anything about the nature of my symptoms. He gave me herbs to "drain the heat". It seemed to work, but not completely, and I was still going to the bathroom all the time. He also altered my formula at one point and it threw me back into the inflammation. He was very informative, though, and told me that my excess heat or "Yang" was the result of deficient "Yin", which is the cooling or feminine principal. Basically it hadn't been treated properly for a long time and I had become very out of balance. My main problem was one of IMPATIENCE! I wanted it to get better right away, and this was just one facet of the constant urgency I had been feeling off and on for so many years that was really an issue of too much fire.

While seeing the acupuncturist, I was also referred to another Naturopath here in Portland whom I will call Dr. Josh. He was a student at NCNM (very close to graduating) and claimed to have successfully treated IC in the past. On my own, I had been using a combination of research and intuition to select the supplements to accompany the herbal therapy. The Naturopath was in agreement with the supplements that I had recently chosen and impressed with my knowledge. He told me to stick to this regimen and also suggested that I drink a LOT more water. This makes sense logically, but when you are going to the bathroom 50 times a day the last thing you want is more liquid! Dr. Josh explained IC in a way that completed the picture for me. He told me that the bladder walls were weak and "leaky", which caused irritation in the tissues around the bladder. It also caused the bladder to cave in on itself, so more water was needed to stretch it back to normal capacity. He explained to me the importance of rebuilding the bladder lining and increasing the energy flow in that area with exercises.

I had already been on a diet that excluded wheat, sugar, alcohol, coffee, and all of the other IC irritants, but my will power wasn't always strong (I can't live long without chocolate). I was tested for food allergies as well so that my diet was completely clear of irritants and I could ensure that I did not have a yeast problem. I started drinking more water and used something called "Clustered Water". It is water that releases toxins and hydrates the system more effectively than regular water. I will tell you that in my opinion it has been on of the most important keys to my healing process. I also started taking a glucosamine/ chondroitin/ MSM supplement and Gotu Kola extract to help heal and rebuild the tissues in and around my bladder, as well as the NAC (sulfur) that Dr. Josh recommended. I found that while the Chinese herbs seemed to help a bit, they were not getting rid of the inflammation entirely, and I successfully treated it with bromelain, or pineapple enzyme, combined with Quercetin and vitamin C. I have also been taking a wheatgrass supplement to help me get all the minerals that I need.

Taking action to move my physical energy was also a necessary component to healing my pain. Exercise has helped to relieve inflammation and create a strong sacrum and spine. I do pelvic floor exercises to strengthen the muscle control around the bladder and I also use a large sized hoola hoop to stay fit. It is perfect for abdominal exercise and creating a flexible spine. I think that exercises and meditation (BREATHE!) increase will power. I am certain that learning will power is one of the biggest lessons that having IC symptoms taught me.

The issue of whether a bacterial agent is responsible for IC has been very important because in my gut I have ALWAYS felt that I had some kind of untreated infection. My doctors would never listen to me and I found that to be very frustrating. In fact, I came very close to trying the antibiotic therapy. I now I feel that it would have been "over kill" for me to try it. I am tired of feeling like I am at war in my body, whether it be the candida or whatever bug causes the IC. I think that boosting my own immunity has helped me to regain the balance. I did try an immune booster called Beta Glucan to take care of any infection, and I am not sure if it helped or not. I currently don't take it, but I do recommend looking into it. It is sold under many labels and is becoming pretty well known.

In hindsight, I can clearly see that my "impatience", while justified, was really just another symptom of this excess heat and was making my bladder problems worse. The Yin qualities of relaxation, patience, and low anxiety are the energetic part of IC recovery. I have found that for me personally the door to healing this did not open until I began to take a close look at my feminine side and heal some of the issues around it. I had a dream that a lady in white was floating above me telling me that she was there to help me heal this and to take me to a new level of emotional awareness. That was in the middle of May, right as the symptoms stopped. I really FEEL that IC has an enormous emotional component, and that the literal flow of the water in the body is affected by the flow of the emotions.