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Interstitial Cystitis


#1

Hello,
I have recently (Fall of 06) been diagnosed with interstitial cystitus. there is no western 'cure' for it. It is very painful and considered chronic.

I have found that an alkaline diet gives me the most relief. I am now seeking alternatives to western medicine. My doctor also is open to alternative treatments and ideas for treating IC.

I have a 'theracane' and would like to pinpoint some areas of trigger points that may give me some relief to the pain, and ultimately points that will help to heal the bladder.

In addition to the IC I also have scoliosis (a pronounced S curve)so my backbone is distorted. The upper back swings to the right and my lower back swings to the left. I feel it has some bearing on my IC condition.

I would appreciate some input on all levels - body work, acupressure/ acupuncture, diet and herbal healing information.
Many thanks.
Rebecca (BK Blondie)


#2

Hello Rebecca,

As you may know it is unethical for us to offer you treatment points, etc. without having seen you and conducted a complete Chinese Medicine examination and diagnosis. Furthermore, there is little you can do on your own, acupressure wise, that will help with chronic conditions of this nature. From what you have mentioned the scoliosis is definitely related to your symptoms as it will effect the nerve conduction within the lower part of the spine where the bladder is innervated.

Both the scoliosis and the cystitis can be treated with acupuncture and tuina massage. You should find a practitioner in your area who practices both and try 4-7 treatments to see what type of response you get. If you cannot find a practitioner who practices both try combining acupuncture with a medically oriented massage therapist, preferably someone who does deep tissue work and has experience with scoliosis. Your dietary changes and herbal medicine may help as well, but without proper nerve conduction they will likely be of limited value.


#3

I just want to make it clear that interstitial cystitis is not the same as cystitis.
I have had IC 8 yrs now. Persons with IC often seek alternative treatments due to the nature of this disease. Every case has different symptoms and western medicine just can't offer treatment to a disease that is like a finger print. The problem seems to be that there aren't many well versed healers out there learning of IC.
It is thought that several reasons have caused IC. Normally IC stems from a problem that has brewed for time and finally a serious out of balance disease know as IC is present. Persons with long history of yeast infections, chronic UTI's , improper diet, hormonal imbalnces, all play a roll in IC. Every person will have a series of events that led them to IC. A lot of patients have had the feeling of a UTI where no bacteria is present the use of antibiotics are used over a long period of time leading to yeast and poor immune system leading to IC.Regardless of the origin, it is clear that the majority of IC patients struggle with a damaged urothelium, or bladder lining. When the surface GAG layer is damaged (via a UTI, excessive consumption of coffee or sodas, traumatic injury, etc.), urinary chemicals can "leak" into surrounding tissues, causing pain, inflammation, and urinary symptoms. Oral medications like Elmiron and medications that are placed directly into the bladder via a catheter work to repair and rebuild this damaged/wounded lining, allowing for a reduction in symptoms.

Recent work at the University of Maryland, Baltimore indicates that genetics may be a factor in a small subset of patients. Two genes, FZD8 and PAND, are associated with the syndrome. FZD8, at gene map locus 10p11.2, is associated with an antiproliferative factor secreted by the bladders of IC patients which "profoundly inhibits bladder cell proliferation," thus causing the missing bladder lining. PAND, at gene map locus 13q22-q32, is associated with a constellation of disorders (a "pleiotropic syndrome") including IC and other bladder and kidney problems, thyroid diseases, serious headaches/migraines, panic disorder, and mitral valve prolapse.

(Numerous publications by Keay & colleagues available at PubmeD Keay, S, Zhang, C., Chai, T., Warren, J., Koch, K., Grkovic, D., Colville, H., Alexander, R. Antiproliferative factor, heparin-binding epidermal growth factor-like growth factor, and epidermal growth factor in men with interstitial cystitis versus chronic pelvic pain syndrome. J. Urol. 2004 63:22-26.)

Unfortunately, there is no definitive diagnostic test for IC. A diagnosis is usually based upon a patient's symptoms, a cystoscopic examination of the bladder under anesthesia and exclusion of other bladder diseases. During the cystoscopy urologists carefully examine the bladder wall for signs of IC, including small petechial hemorrhages (aka glomerulations or small wounds) and/or larger Hunner's Ulcers.

IC has many other disease that often come along with it. Some examples are IBS,vulvodynia,pelvic floor disorder,Migraines, CFS, Fibro,endometriosis, lupus,lyme and more.
I hope that more people become aware of this disease. It is painful in it's nature and difficult to treat. I myself have been going at this alone for the past 5 years due to not finding proper care. I end up teaching the dr's and they can not help me. I hope more people learn about this painful disease so that so many of us ICers do not have to feel alone and helpless.
I have come a long way in my healing but I still continue to look for someone willing to work with me.
For those of you willing to learn more good sites to look are the IC network and Amrit Willis RN solving the interstitial cystitis puzzle. She has a support group on yahoo and a newly revised book out.
I am located in south west Florida in the St. Pete Bradenton area for any of you willing to learn and help me find a light at the end of this road.
Be Well


#4

I have treated a couple of women recently with IC. As Loro states, it can be very difficult to find health care practitioners who even know that it is something different from plain ole cystitis. I am lucky enough to have a colleague who has IC (although she isn't lucky!), and she has shared with me many of the "tricks" that have helped her. First and foremost, there are many food triggers that can cause IC to flare up. The IC websites that Loro mentions are fabulous in presenting what many of the common food triggers are. If you suffer from IC, you simply won't begin to get better until you make changes to your diet. The other most important relief mechanism that she and my patients have found is taking Aloe Vera caps - but ONLY from this distributor. Healthy Life Harvest. http://www.healthylifeharvest.... I encourage you to read the test studies and testimonials. (And no, I don't work for them.)

Since it is autoimmune related, and since so often patients also present with other chronic complications, continual treatment is something that should simply remain in the patient's schedule. This can be overwhelming and oftentimes daunting, but once the pain and urgency is lifted a little, life becomes so much more bearable! I encourage you to find a practitioner who does at least know a little bit about this condition - we are out there!

Good luck to all of you IC sufferers out there. May you find relief soon.

blessings,

Julia Carpenter, LAc


#5

I firmly understand the difference between cystitis and IC, as do the majority of medical professionals. While I appreciate that you have not had effective treatment from your practitioners, it's generally not helpful to assume that people are misunderstanding you.

My response was very basic, for the reasons I pointed out and because Chinese Medicine is not a point to condition modality. When you see a qualified practitioner they will evaluate you by looking at a full range of signs and symptoms and come up with a diagnosis in Chinese terms. This diagnosis is based somewhat on the conditions you are presenting with but also on a whole host of other information. This is exactly why acupuncture is most often very helpful in the full range of complex auto-immune related conditions - and complex conditions in general. In truth, it doesn't matter to the majority of practitioners what your western diagnosis (or lack thereof) is - with proper diagnosis and pattern differentiation these conditions can all be well treated. If you are not getting results in a reasonable time frame consult a different practitioner. Acupuncture is very helpful for a broad range of cases, but as you get into more complex ones there exists very observable clinical differences in results from different practitioners.


#6

I thought I would also include a basic idea of what I most often use in IC cases as we have very good results with these and other auto-immune based conditions. This is less so you can try to treat yourself with acupressure as I don't believe that would be strong enough to really make a big change initially, but more for the benefit of other practitioners.

The system of acupuncture I use is the Tam Healing System which is a combination of some very old Chinese theories, some TCM, and some modern western understandings. The points make sense from multiple theoretical viewpoints, are areas that we see "blocked" on people with these cases, and are areas that release as the patient improves. Furthermore, the clinical experience includes 40,000+ patients over the last 20 years or so, so it is based on a patient sampling which allows for seeing patterns which people may miss without seeing such large numbers of cases.

For IC, and any auto-immune condition, we focus work on the huatuo area of T1, T2, and T3 which is the bone marrow, thymus gland, and lung/lymph respectively. Together these points are beneficial for balancing and strengthening the immune system and are a primary focal point. We also focus on the huatuo of S1 and S2 which are the ureter and the urinary bladder respectively. These points in conjunction with other TCM points based on an overall pattern differentiation are very helpful.

I also agree with Julia about dietary changes, although I believe the emphasis is on avoiding things (anything) that challenges and/or aggravates your immune system which is not limited to dietary change. As you point out Rebecca, these conditions are usually years in the making and there appears to be increasing prevalence of auto-immune based conditions in our society. From our perspective these come about one of two ways - based on what we see. First is a specific large trauma (death in the family, accident, surgery, etc.). These significant events appear to play a large role in setting off these types of conditions. Second is minor but constant irritants to a persons nervous/immune system - this can be environmental, dietary, emotional, etc. - usually a combination.

Ultimately your immune system should work for you and while you should eat well, exercise, etc. you shouldn't have to worry about your contact with challenging foods, environmental factors too much - that's what the body is good at. When it gets over worked, however, is when problems seem to start and where these get focused is different for each person - it could be MS, rheumatoid arthritis, IC, etc. - it doesn't really matter from a Chinese perspective as proper treatment will treat the core/root of the problem. And there is a root to all of these conditions.

As for a treatment timeframe, patients needs to take their acupuncture treatments seriously and commit to the process, but results should come about within at least 4-10 treatments to a noticeable level. Full resolution of these symptoms is very possible, but for this to happen generally you are talking about 3-6 months of treatment as a minimum (not necessarily weekly, but these will depend on the practitioner and your level of change). All things considered it's a fairly short time period to improve significantly when there are very few other valid options. Most patients will improve steadily along the way, so the process isn't just a wait and see type approach, you should notice change during the process.


#7

Hi Rebecca; I have IC also, and have had it for 8 years (although I've been it remission for 5 years, knock on wood!) I sympathize, it is truly a terrible disease. Like you, my pelvis is twisted (one hip tilts forward and the other tilts back) and I have some scoliosis, and at least for me, there is definiately a connection with my back/pelvis and the IC. I tried diet, medications, herbs and acupuncture, but what ultimately helped me the most was finding a pelvic floor myofascial trigger point therapist, who helped get my low back and pelvic floor tissues to be less tight, and apparently this can help to normalize bladder function as well. I found my therapist by contacting the folks at the IC network, an online patient organization. Ask them about finding a "pelvic floor therapist" who is familiar with IC. I hope this helps you! Beth


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