Health Organization for Pudendal Education

First thanks for this forum and my sympathies to all. My life has been a burning hell in my nether regions the past 2 months+ and I may even have it easier than many of you. Boggles my mind how tough it is trying to get properly diagnosed but thx to this forum I see I am not alone in that. Regardless it has been very hard coping with this problem.

I've been going in circles the past 2+ months with little help from medical professionals, and doing some research myself I've arrived at the conclusion that something is wrong with my pudendal nerve (and possibly others).

I at first started to write a long post detailing all I've been through but realize doing so would more likely just put everyone to sleep or running for the exits so instead I'll try just summarizing some things and ask for some hints/pointers of things to look at/specialists to try to see that I can use to try to get my GP Dr steered in the right direction.

In October I started getting horrible burning pain in my nether regions when sitting down. The burning mostly is/was under my balls, parts of my johnson, my anus, also have sometimes peeing or crapping (sorry for the lack of medical terminology), also if climaxing. Even had problems sleeping because of the burning if things touched me down there or for no apparent reason.

This all started after I noticed a strange red rash on my inner thighs near my balls back in September. Wasn't pimply or rough, didn't look like shingles, had no discomfort,just some islands of weird looking red skin bordered by normal skin. Had no idea what it was and didn't really think much of it since wasn't bothering me, no itching, no discomfort of any kind.

After about 2 weeks of that rash not seemingly fading or spreading either, I went to my GP and asked about it. Without looking at it he decided it must be a fungal infection (I insisted he look at it anyway so I showed him). This resulted in my being put on 2 different sets of antifungal creams over the course of about a month. It was only while on the first cream that my burning issues started. Coincidence? Have no idea. Oddly whatever the red rash was it went away to the extent that my skin that was red turned brownish/tan.

With no improvement of my horrible burning sensations down there such that sitting down was unbearable torture which seemed to have gotten worse I begged for something more to be done and was referred to a Dermatologist.

Dermatologist put me on 2 other lotions/ointments for bacteria and yeast infections but she also seized on the fact that my medical history included lower back/spine problems with arthritis starting in 2022, and also of the way I described my pain of being "burning" that I was perhaps suffering from some form of neuropathy rather than an infection in the first place. I thought she must be crazy to suggest that (what was the original rash from then?), also because the pain I've had from my back probs were never any sort of burning feeling, just pain itself and isolated in my lower back. But I realized over the next 2 weeks or so that she may be onto the right thing. My burning pains spread to include my butt, sometimes on thighs, resulted just putting on any pair of pants or UW that put pressure on anything down there, etc. That and noticing things like my privates always felt colder than they should, and if they touched my thighs I had strange temperature sensations of being in contact with something HOT, PLUS I noticed just cleaning myself off down there with lukewarm water the water itself felt HOT. That made no sense unless a nerve was going crazy IMO.

So I went back to see my GP, told him about the possible neuropathy connection as suggested by the Dermatologist. My previous GP had retired & I just started seeing this GP so I made him aware of my back/spine issues from 2022. Discussed the physical therapy I went through in 2022 and the issues regarding that and asked to go for an updated set of x-rays – or other similar imaging tests like MRIs - to see if things were worse, that maybe something going on with my spine that could explain this “neuropathy issue”. For reasons unknown to me he ignored my request for updated x-rays/MRI and instead recommended I see a chiropractor who he said could perform some sort of procedure on my spine that might help, and he gave me a referral for that.

I also asked current GP if I could get lab tests to see if anything odd jumped out that might explain my problem which he did act on. I was especially curious about how since I have been on a proton pump inhibitor for 20+ years and that can cause all sorts of weirdness with vitamins/minerals/absorption/utilization/affect bones/nerves maybe something out of kilter might get revealed.

Things were left at that point as wait for the labs to come back b4 proceeding further with the chiropractor.

In the meantime I had been doing lots of work researching my problems and stumbled onto this mysterious “pudendal” nerve which I had never even heard of b4, and was amazed to see that many of the symptoms I have been experiencing directly correspond to problems with this nerve.

Labs results which came back Friday 12/1 revealed nothing concrete that might be related to my burning pain other than a vitamin D deficiency. Dr did not respond to any of my msgs I left asking him about that and other things until Friday 12/8 (gotta love current managed healthcare). Was told to take vitamin D supplements which I have just started.

I also asked my Dr if he knew of any Drs/PTs/etc familiar with pudendal nerve issues since from my research that seemed to be involved and if chiropractor was still his recommendation or not. At that point he mentioned that seeing a urologist might be more appropriate but gave me no referral for that. At this point I do not know where I stand with what to do next but tried asking again (no answer yet).

I'd be happy to list what the 2022 x-rays revealed in detail if folks want to know that but do want to say that something which was revealed in my initial physical therapy session after the x-rays in 2022 that could be significant now is that MY PELVIS WAS OUT OF ALIGNMENT and one leg was longer than the other.

Thanks to this forum I have learned pelvic misalignment in and of itself could be causing my current misery so am very interested in having that checked again & fixed – even though the nerve damage could already be done/permanent (?).

So at this point things are still up in the air and I do not really have any options going forward. Am thinking of just going to the chiropractor since I already have a referral to do so (even though it sounded like the GP backpedaled on that in a recent message), at the very least to see if my pelvis is out of alignment again.


If you were in this situation, knowing all you’ve gone through with your own pelvic or pudendal issues, what would you do? I feel like I am in a situation that if I leave it up to my GP not much constructive is going to happen, that I have to push for things myself to get anything done, and even with that I couldn't get simple x-rays done that I asked for (maybe the chiropractor could do that?).


If anyone has recommendations for pudendal/pelvic problem experienced Drs/therapists/etc in my area (Philadelphia, PA western suburbs) please let me know. You can post here or just PM me. Unfortunately with my current medical insurance I feel that most options will be “out of network” and beyond my financial means.


[Apologies for above – I was trying to be brief and left out a lot but I wrote way too much!]

Hi Heisenberg,

I'm sorry about your pain. I have not heard (from reading the forum and talking to other pn patients) of pn starting with a rash in the inner thighs, but it does seem like a big coincidence! Maybe Violet knows of a possible connection.

I think getting that urologist referral makes sense. I think getting referral to a pelvic pt would also be helpful, but the urologist may be the best doctor to get that from. It can be hard to find pelvic pts who treats men, but you're near a big city, so it seems possible. I never had any long-term benefit from pt (and I could never deal with internal pt), but I my pt was knowledgeable and helpful in many ways. But, other people have had long-term benefits from it. And many times pts can help with the diagnosis.

Keep us posted.
April

Thanks April.

Umm, just a quick update.

This is odd - but typical of many of my experiences with Drs over the years. Being told one thing but finding out that isn't actually the case or leads to something else entirely...

I decided as a next step to go to the "chiropractor" whom my Dr gave me a referral for. To see what if anything they had to say, especially if they would check my pelvic alignment & fix that if out again. First I had to lookup their name/office to verify the phone # & office location (when the Dr referred me to a Dermatologist in October/Nov the phone # on the referral was not even in service!), as well as find out if they took my insurance.

To my surprise I discovered this "chiropractor" was not that AT ALL. He is an MD pain medicine type specialist dealing in specific spine areas. So why did my Dr call him a chiropractor rather than "Dr"?? Who knows.

Called his office. Verified my insurance, discussed my situation, expressed my concern over this involving my pudendal nerve but wanted my back/spine/pelvis checked anyways etc etc. Person I spoke with said to NOT see the Dr I was referred to!! Instead said to see a DIFFERENT Dr in their organization, who supposedly has pudendal nerve issue experience (in addition to being able to look at back/spine/pelvic causes). And to top it all off - this OTHER DR has their office IN THE SAME LOCATION as my primary Dr (which will save me commute time in going to the original "chiropractor" who is about 45 mins away).

Have no idea how any of this will shake out of course and this odyssey could be a long one. Hoping for the best but am expecting the worst. Odds IMO of this new Dr getting to the bottom of things IMO is slim based on everything I've been reading about folks going through up here but guess I'll find out.

Hello Heisenberg,

Welcome to the forum. It's rare, but I have heard of people having a red rash with pudendal neuralgia. I have also heard pudendal neuralgi described as burning in hell. I think I described it that way myself once upon a time. So, I'm sorry to hear you are going through this because I know it's no fun. Have your doctors offered you any medication to get you through until you can get a proper diagnosis and treatment? I don't like taking medication, but it sure helped me get through the worst of pudendal neuralgia.

If this new doctor you are going to see doesn't seem to have a clue, there are several doctors in your state who diagnose and treat PN but I don't know if any of them are near you. https://www.pudendalhope.info/united-st ... icians/#PA
Hopefully you can find a doc close to you who knows what they are doing and can order an MRI of the lumbosacral area, lumbosacral plexus, and pelvic area, to see if there is anything obvious contributing to your pain. Or you might want to consider calling Dr. Potter's office to see if they know anywhere in the PA area you can get an MRI using the Potter protocol. Here is the link to her contact information. https://www.pudendalhope.info/united-st ... icians/#NY (scroll down in the NY section)

There are also some PT''s in your state who treat pudendal neuralgia, listed at the following link: https://www.pudendalhope.info/usa-physi ... apists/#PA Hopefully some of them are in your area. They could do an evaluation to see if you are out of alignment or if you have other musculoskeletal issues that might not show up on an MRI.

Regarding chiropractors -- I've been to good ones and I've been to scary ones. Unfortunately, prior to my pudendal nerve release surgery, it was useless to get an adjustment because my ligaments were in bad shape and wouldn't hold the adjustment. After surgery, I saw an osteopathic doctor who gave me some prolotherapy to stabilize the ligaments.

If you have a problem in your spine, it could potentially cause symptoms similar to pudendal neuralgia so it's good to have that ruled out with the MRI.

So, you ask what would we do in your situation. If you can get a proper diagnosis and some conservative treatments in your area, that would be a first step. See a good PT for an evaluation, get the MRI's, and see how it goes with that doctor near you -- see what treatments they can offer. Ask you doctor about trying some medications that might help you get through this initial diagnosis and treatment phase - especially if you aren't sleeping well. If the providers you see diagnose you with pudendal nerve entrapment and none of the conservative treatments are helping , then you might want to consider traveling to one of the PNE surgeons for an evaluation. It's a bit of a long journey and it can be exhausting. If your finances are an issue, some facilities will help with patients who meet financial need guidelines. But you can cross that bridge if you come to it. For now, you want to focus on a proper diagnosis and some pain relief measures.

Violet

Thanks for taking the time to reply Violet. I greatly appreciate it. I've seen you comment in many threads up here with tons of great info, you are the REAL expert here IMO....

I did see that info about those 3 Pennsylvania docs up here b4. I don't believe any would take my insurance/be out of network (right now until end of this year I am in an HMO cannot even get "out of network" coverage at all although next year I am switching to a PPO and might be able to get "some" coverage - meaning very little so I prob can't afford it).

I did not see that PT link though, thx for that. Ironically one of those PTs in the list is with the same firm as the Dr I am seeing next week so maybe that will work if it turns out therapy of some sort will help.

I'm taking things one step at a time I guess. Something else going on within the past week that is scaring me is that my legs in general are getting tired VERY easily. Very bizarre. Maybe that will be another clue for the Drs. Could just be because I don't sit down much or am in awkward sitting positions (including on my knees) most of the time now. Oddly I've tried multiple different kinds of donut pillows, neck pillows, homemade cushions to elevate my central area and none of that has worked however I've found for short periods if I sit on a FLAT surface like a stool with no padding on it in particular ways I can do that for a period of time b4 then unrelated to my burning my legs/butt gets uncomfortable.

As far as meds for the burning, I'd prefer to continue to bear with it than go on something like "gabapentin" and mess with my CNS (which the dermatologist was going to do as next step without even trying to determine the cause of my burning). Some nights I don't get much sleep but usually things calm down once I lie down and get in a position where nothing is touching anything down there. Right now my sleep patterns are a mess though (is 2 AM and here I am typing instead of going to bed)...

I have asked to get updated back x-rays, MRIs, etc to help with a real diagnosis but I was unable to get that. Am hoping Dr I see next week will do that. All I was able to get test-wise so far were a bunch of blood & urine tests looking for many possible causes but nothing really jumped out (other than I have a big vitamin-D deficiency, where the "D 25 Hydroxy" test showed me at less than half (@14 ng/mL) of what the minimum should be (range of 30-100). Am on big vit-D doses now...

Again, THANKS!

Hello Heisenberg,

I would like to tell something about Trauma,

I also know these red spots. I my case the doctors immediately did a biopsy (in Germany there are no problems with health insurance) and said it was a "granuloma anulare". Otherwise they couldn't say much about it and couldn't explain anything. I am a patient who asks a lot of questions but in this case all I got was a shrug of the shoulders. Otherwise there was nothing to do, no cream, no pills........wait??? I googled, the "disease" was a reality but otherwise no clear information, where from and where to??? It lasted two years, then the red spots slowly disappeared. Today, after years, I have some on my feet, because of the pressure of my shoes.

Some time after this „diagnosis“ I read Robert Scaer. He is one of the most famous US trauma researchers in the world. He explains in an excellent way how trauma affects the nervous system, how it stores these experiences and later expresses them through various symptoms.
Robert Scaer writes about red spots that often appear on the skin in the vicinity of trauma. They appear suddenly and slowly fade away. He calls them "stigmata" as the wounds of Christ are called, however, as you write, they are completely without problems, just spots.

I think in your case the red spots were the "forerunners" of the pain that followed, because it started in the scrotum and the spots were near this area, if I understood you correctly. These pains are traumatically, so I don't wonder you experienced these spots.

The symptomes of trauma, whether physical or psychological, are often used to appear in the lower part of the body because that is where we are connected with earth. These pains you indure are traumatically and in my oppinion are generated by your autonomous nervous system. But of course first have a look if there is a possibility to recieve a clear bodily diagnosis.

But....don't worry about the spots, they are not dangerous in case they should appear again. Of course they are a sign of trauma.

Robert Scaer, „THE TRAUMA SPEKTRUM, Hidden Wounds and Huma Resiliency“.

I wish you all the best
Aristocat

Interesting, thanks for your post.

My red rash down there was contiguous patches of red skin, no spots or pimply bits per say like "normal" rashes, just red areas which I now call patches surrounded by other areas of normal skin color, very odd though, never saw anything else like it. The red disappeared and my skin in those areas turned brownish once I started on the first antifungal cream. Those darker areas are very very slowly fading back to my normal skin color but still there (2+ months later). No discomfort at all from that.

Also, I get tiny red spots/dots all over my lower legs, mostly on my shins, sometimes elsewhere on my body, which are called Petechiae (they are from capillaries leaking). This is mostly because I am on warfarin (a blood thinner) since 2014, plus have venous deficiency in both legs (due to a vein being removed from one leg for a coronary bypass) in 2014, plus had a job for past 13 years where I was on my feet basically 12 hours a day. I during the past 12 years I have gotten so many of those red dots that large areas of my shins are now tinted brown. At first I wondered if my new rash in October down there was that but it didn't look like dots.

Hello Heisenberg,

Sorry, my translation was not quite correct. Of course we are not talking about spots, but patches, which can vary in size.
In my case, the whole body was affected. As I said, about 2 years, first they were red, then they turned brown, then yellow, then they disappeared. They reminded me a lot of bruises, but they weren't painful and I can only assume that it was bleeding under the skin. It had nothing to do with the usual skin diseases.

At the same time I developed a histamine intolerance (MCAS = mast cell activation syndrome). I see a connection, as in both cases the
immune system is affected.

Now I have read Robert Scaer again.
He has observed in many patients that they develop autoimmune diseases after various types of traumatization. These include MCAS and rheumatoid arthritis!, which he names explicitly. He writes very clearly that trauma makes physically ill. I see a connection between my MCAS and the patches. So you also seem to be on the right track, if you see a connection between the rheumatoid arthritis in 2022 and the patches. He writes that the hormone system
corresponds very strongly with the immune system and both are naturally controlled by the nervous system which is out of control.

I don't know how rheumatoid arthritis can be treated and whether you are already taking medication or do other things to stop the inflammation. I can cope with MCAS by a diet.....and no stress. I know, it is hard to avoid, but it is the worst poison.
Nevertheless, strong pathological activities in the immun system can play a big role in the patches.

Aristocat

I definitely am suspicious of some kind of autoimmune response issue going on. I am a long time sufferer of "ulcerative colitis" intestinal attacks which is an autoimmune type of disease. I actually had a really bad one about a month or so b4 all this other stuff started. So could be that - or could be more relating to my spine (have noticed other progressively worsening nervous system burning/pains elsewhere recently). Based on my own life experience with Drs I suspect no Dr will really be able to figure out what is going on now.