Pudendal Nerve Fixed - Revised Version - Interstitial Cystitis Network Support Forum

zacjupiter · 02-13-2007, 03:33 PM

Obviously I broke some IC site rules as my previous message was removed. This is a revised version without any references to the physiotherapist that helped me.

I believe it is time for me to share my experience and, I hope, a lasting success.
I was never officially diagnosed with Interstitial Cystitis, however I had a number of typical symptoms like irritation, urgency, frequency and sensitivity to acidic foods. My doctors could not establish an alternative diagnosis and IC was suspected based on a cystoscopy.

About 4 months ago I started taking Cystoprotek and my symptoms improved, however the improvement levelled off after about 2 months. Then, by accident, I heard about a man with very similar symptoms, who was treated successfully by a physiotherapist for Pudendal Nerve Damage.
At first, while researching on the internet, I couldn’t clearly recognise my symptoms as they typically talk about pelvic pain. However, after some further reaserch this diagnosis looked more plausible.
I suffered the same symptoms about 3 years ago, which cleared after a course of antibiotics. I have to add that no bacteria could be found at any time. I started suffering the same symptoms about 8 months ago. I tried to find some common cause that could have triggered the onsets of symptoms both times. In between these two events I had hernia surgery and open heard surgery, but no surgery before the first event.
One of the possible ways to damage the Pudendal nerve, according to some sources, is to ride a bike. I usually don’t ride bikes but I remembered that I hired a bike for a day about 3 years ago, and about 9 months ago I started going to a gym and rode an exercise bike there. After checking these dates and finding a good correlation, I decided to start the physio treatment.

After approximately 5 weeks of treatment my symptoms improved significantly, with at least half of the days being symptom free. When I do get symptoms, they are less pronounced and do not last as long as they used to.

I am incredibly lucky as this physio works where I live - in Brisbane, Australia. He seems to be very successful in treating people with similar (usually much stronger) symptoms. He cooperates with the local urologists and some international bodies involved in Pudendal Nerve treatment. He told me that he followed the treatment of a group of 40 patients and 37 of those 40 were completely free of symptoms after his treatment.
The treatment consists of lower back manipulation and a set of exercises that are designed to loosen and strengthen the pelvic bone – spine connection. The lower back manipulation is similar to chiropractic treatments.

I believe that many people who were diagnosed with non bacterial Prostatitis or Interstitial Cystitis, could be suffering from Pudendal Nerve Damage. In my case, I suspect that the initial irritation came from the nerve damage, which further resulted in the bladder irritation.

***ICNDonna*** · 02-13-2007, 05:00 PM

Pudental nerve entrapment is a diagnosable condition. If you feel this may be your problem, my suggestion is to discuss it with your physician.

Donna

zacjupiter · 02-13-2007, 11:09 PM

I provided this information in hope that it could be useful to someone else.
Diagnosing Pudendal Nerve Damage or Entrapment in not easy or pleasant. I decided to try the related physiotherapy because it was comparably inexpensive and painless. There was nothing to lose and possibly much to gain.
The decision certainly paid off.
Ultimately we just want to get better regardless of the name of our condition.

CarolinTexas · 04-14-2008, 04:52 AM

Thanks for that information. My docs have had a hard time diagnosing me as well. I've been diagnosed and undiagnosed which is frustrating!

I cannot understand why more doctors don't treat the pudendal nerve when IC, PFD or CPPS is suspected. My urologist said 'nerve damage'. I asked him to name some possible nerves (knowing the names already) and he said he didn't know (liar) but to try pain mapping with a neurologist. The neurologist said they don't do that. Aaaaah!

Your message is important. Putting someone on Elmiron and saying 'limit your diet' is not enough. I think they should do an EMG on the pudendal as a matter of course. Or, at least, prescribe specialised physiotherapy. In other words, they need to be more aggressive about breaking the abnormal nerve/pain cycle before it becomes permanent PNE.

I suspect my pudendal nerve is freaked out and am following the same path. With the doctor's knowledge, of course.

How are you feeling these days?

bunnykinb · 04-14-2008, 10:08 AM

I am really happy for you. I need to schedule a visit with the urogyno, but have some temporary set back since my son broke his arm and we won't find out until tomorrow if the bone needs surgery or not.

zacjupiter · 04-14-2008, 02:43 PM

I am quite well these days and rarely feel any symptoms. I am doing yoga twice a week and found those exercises quite beneficial. It has been about 20 months from the first symptoms. The first 3-6 months was quite bad. I must say Cystoprotek helped but once I started physiotherapy and exercises things improved much more.

I wish you all the best. My recommendation is to try things that that are generally healthy and not too costly before going into heavy stuff. Even some medical investigations have hurt me quite a bit.

LuvMaui · 04-14-2008, 03:35 PM

I need to research the Pudendal Nerve. I was absolutely fine until I had a hysterectomy 2 years ago. During the surgery they moved some muscles that are connected to the pelvic floor, which share the same nerves that connect directly to the bladder muscles. Well.. during an IC flare I feel those muscles cramping a lot. I also have really serious low back pain during IC flares.

I know something happened during that surgery that caused my IC. My Uro say's oh.. No... It's your age, it's your hormones, it's just unknown... I don't think he knows much about IC.

CarolinTexas · 04-14-2008, 05:45 PM

Hey LuvMaui, mine started with surgery also. They moved the rectus abdominis (during an anterior fusion) as well as smooshing lots of organs. I found a nice forum dedicated to pudendal nerve problems if you are curious. These people mostly acquired it from exercise such as bike riding (like ZacJupiter).

ZacJupiter, would you mind PM'ing me your original uncensored original post? I'm curious as to what was left out. Could you please tell me what your symptoms were? Or refer me to an old post that might explain them in detail? I'd love to pick your brain if you have time.

Donna, how is it usually diagnosed? EMG's are what I've heard.

My pain doc referred me for IV therapy today (admission to hospital for pain treatment & cath involving large doses of medication). Sort of a surgery without the surgery to shock the pain away - my favorite kind! It would probably help as I'm drug resistant and have a hard time getting good break through pain relief.

notmybestday · 04-14-2008, 08:09 PM

zacjupiter -- Did you find that your symptoms got worse when you sat for long periods of time? I find that to be one of my biggest triggers.

Actually, a physical therapist I saw briefly also suspected some form of pudendal neuralgia. Even if it isn't, I can kinda instinctively feel that things in my pelvic region aren't quite right. All the nerves are firing off at the wrong time, and I'm having some trouble with muscle control.

Anyway, good for you for being proactive about things. I also wish I had tried some conservative things before going right to cysto/hydro.

zacjupiter · 04-14-2008, 11:38 PM

My original message was not very different. The problem was that I provided contact details for my physiotherapist and how much he charges for the treatment. I thought that people that have no access to a physio that specialises in the pudendal nerve treatment (I believe there are only several around the world) might consider a holiday treatment in Australia.
Of course there are many aspects to consider such as money, additional stress from travelling and that it might not work for you.
I was considering to at least provide some photos or video with exercises that helped me.

Sitting for longer periods does make things worse and if you read posts on the pudendal nerve sites it is often mentioned and I had the same problem. They say that the toilet seat is the best seat in the house, as it does not cause pressure on the sensitive area that is full of nerves. I often experienced improvement when I didn’t sit much.
Another thing that was causing more irritation for me was any application of heat in the lower tummy area.

I don’t have much more information to provide but if I can help in any way please let me know

I believe that the pelvic area is so interconnected that one problem can cause another and what starts as a nerve irritation can finish as a full-blown IC. If the nerve irritation persists there is not much chance getting rid of the IC.

CarolinTexas · 04-15-2008, 03:11 AM

Couldn't agree more. Sitting is bad for me as well.

Would you mind giving me the top three things you think helped most in physio? Things like internal lidocaine, trigger point location, tens unit electrode location (if used), medication or supplement use.

I realize those are personal questions, so feel free to ignore or PM me.

Thanks,
Carol

notmybestday · 04-15-2008, 01:11 PM

Thanks for your response, zacjupiter.

I can definitely believe that the pelvic region is totally interconnected. A spasm in one set of nerves or muscles gets the whole region going. It's awful.

I would also be interested in what kind of work you got done, if you wouldn't mind sharing. I attended a few PT sessions and did mostly leg stretches that were aimed at muscle relaxation, but I didn't find any relief at all.

Thanks.

victoria/me · 04-16-2008, 09:25 AM

Does anyone know if Clobetosol is something that can be prescribed without further testing. Also, could this interfere with the medicine I'm on? I'm taking elmiron, elavil and atarax..and aloe vera pills.
My urologist is the one that I've been seeing for my possible IC diagnosis and for my symptoms, in general. So, could he prescribe it without me seeing him for this, specifically?

zacjupiter · 04-17-2008, 01:16 AM

My physio manipulation was more like chiropractor manipulation of the lower back. There were some backward leg bends and mostly torsional twists (he pushed the upper-middle body one way and pelvis area the other way) and sometimes that would produce strange cracking sounds. I can’t remember all the moves as I saw him the last time about 10 months ago.
If you want something similar you could visit a chiropractor and ask him/her to loosen the lower back-pelvic area and then work on stretching and strengthening of the lower back, pelvic area and abdominal muscles that support the spine. For stretching I would recommend yoga and in particular sun salutation sequence. Another useful exercise is to be on all four (knees and hands) and then lift one leg back as far as you can and then the other leg and repeat that at least five times on each side.

snfair46409 · 10-14-2008, 07:06 PM

I just read this thread and finally things are all starting to fall into place. I fell down a flight of stairs in May of this year and landed directly on my tailbone. I slid down the stairs on my rear and hit my tailbone over and over, probably 3 or 4 times. The pain was excrutiating, but it finally went away, and within a normal healing time. My mother is a nurse and she said that what I was feeling was normal and that there wasn't a lot that can be done for that type of pain. But at about the same time that the tailbone pain went away I begain to feel the pain in my urethra, around the tip and just inside, and a constant burning, stinging, tingling feeling near the urethra and vagina. Until now I hadn't connected the two. I am going to make a chiropractic appointment first thing in the morning!!!! Wow. I'm psyched!!!