Health Organization for Pudendal Education

Hi everybody!

This is my first post.

To start, thanks for all the info I've acquired so far by reading through various posts.

My basic question is do my symptoms suggest PNE and is it rare that I started experiencing rectal pain approximately 6-8 months *after* Allodynia struck my body?

Here are the reasons explaining why I believe I have PNE:
-Allodynia (extreme burning, stinging, itching) throughout my body, but definitely most bothersome around genitals/thighs/inner legs
-Extreme rectal pain all the pain, but absolutely aggravated by sitting for any extended period of time (use of 5% Lidocaine is the only 'treatment' that provides (temporary) relief)
-For a couple of years now I've had trouble emptying my bladder completely: essentially, everytime I use the washroom I feel the need to empty out a little more urine 2-3 mins after previously voiding (additional urine does indeed manifest itself)
-No medical explanation attained yet for my pain (medical tests so far have ruled out MS, Fibromyalgia, and other neurological conditions, STIs, Hepatitis, skin disorders/rashes, etc.)
-For the last few years I've worked in a factory where I sit on a forklift for 6 hrs a day, 5 days a week (and when not at work I sit for many hours at my computer)
-I worked out at the gym doing heavy weight-lifting for about 2 yrs before the Allodynia gripped my body (I would often feel 'pressure' on my tailbone when doing Leg Press)

If my Pudendal Nerve is indeed trapped (or at least aggravated), is it rare that I started experiencing rectal pain many months after my genitals/thighs/inner legs began stinging, itching, and burning? The Allodynia is definitely more bothersome when my body temperature rises (e.g. the weather gets hotter, I engage in physical activity, etc.). Is it possible that PNE could cause Allodynia in places other than my pelvic regions? Although nowhere near as bothersome, I certainly do experience skin burning on my lower back, underarms, and rarely my stomach and calves.

Can anybody think of any other medical conditions which may explain body-wide Allodynia and extreme rectal discomfort (especially when seated)?

I am currently waiting to hear back from the Wasser Pain Management Clinic in Toronto in order to be (hopefully) seen by Dr. Gordon and Dr. Peng.

Any thoughts on my conditions would be greatly appreciated.

Thank you sincerely

BTW, I've tried topical creams, Lyrica, Cymbalta, Amitriptyline, pain killers, etc. and nothing has brought me relief.

Only cannabis seems to help (sometimes) with my Allodynia.

If nothing neurologic or autoimmune can be detected, look into whole body misalignment due to joint injury. I had various symptoms that did not seem to fit together well: interstitial cystitis, neuropathy in fingers, toes, and pudendal region, migraines, vertigo, and a small spot on my brain which was suggested to be the result of the migraine syndrome. Underlying cause of all turned out to be pelvic injury. It affected my whole body because it resulted in the right leg being 1 1/2 inches longer than the left (due to upslip ilium on the left and downslip ilium on the right, in addition to other patterns of joint dysfunction). My unconscious compensatory posture was to stand with most of my weight on my right leg and my right hip pushed out. This went undiagnosed for 25 years so i have much muscle damage including a weak, flexible left side and a stong, spastic, and inflexible right side.
Many times this is VERY easy to detect if you pay attention to it. I never noticed it on my own, but the moment I had my 1st PT exam and she commented that all my weight was on my right leg, it became obvious to me that she was correct. Often you will see uneven posture at hips or shoulders, or uneven arm swing or an unequal distance between each arm and the body, just walking down the hall towards a mirror or having somebody else watch you walk. In my case this started as a teen and because I am a loud, brash girl from new jersey everyone including my parents saw the hip out and thought it was a personality thing - "attitude". But when talking to people later I found out everyone but me knew I stood unevenly, they just thought it was an affect not a medical problem. You can also have a symmetrical pattern of pelvic dysfunction but in that case, even if everything else looks even, the hint will be that if somebody snaps a photo of you from the side, your neck will appear as if your head is leaning forward, and it will feel locked that way like you cannot align your head properly with your body. There is almost always neck compensation with pelvic injury so stiff neck, trouble turning head, strange neck posture like the forward - leaning thing, or headaches are all hints. I had been to a million Doctors who could not discern this in me and it took a Physical Therapist about 1 minute to notice it. If you have not had a thorough PT exam by a PT Manual Therapist to rule this out, or at least a Chiropractor or Doctor of Osteopathy, do so. MD's are trained in a biochemical model of illness and do not do hands-on work, and so they will miss these things. Misalignment will seldom show on an imaging test, you need a hands-on, eyes-on assessment. With very few exceptions, you won't get even the basics of that from an MD.

Kinec, I was also weightlifting when PNE pain started and yes, it can progress to pain in more areas than what you experienced originally. I had severe spasm of the obturator internus and levator ani pelvic floor muscles causing severe burning in the inner thighs and allodynia throughout the pelvis. You can check out this link for more info:

http://tinyurl.com/66xo88d

It's possible you have chronically strained ligaments from heavy exercise and that this could be contributing to musculoskeltal misalignments such as HM described above. Ligaments do not heal easily and if they've become hardened or sclerosed can put pressure on nerves. Also you can develop tense pelvic floor from muscles due to heavy exercise and they just become more tense when guarding from pain and this can further irritate the nerves. It's a complex mechanism but I agree with HM that you might obtain valuable information from an evaluation by a therapist experienced in treating patients with musculoskeletal misalignments.

Thanks very much for the quick and helpful replies! I appreciate the responses

When I first started learning about PNE a few months ago I basically ignored/skimmed over info relating to physiotherapy. But I've recently learned of the importance that PT, especially pelvic floor therapy, can have in terms of both diagnosis and treatment. Fortunately I've been in contact with another member of this forum who lives in the same city as me and he has recommended a PT who is very aware of PNE issues. I have four appointments setup with this doctor, with my first appointment being in about 3 weeks. I expect that she will be able to shed some light on my condition and perhaps even help reduce my pain. I would be eternally grateful if it turns out that intense PT solves my pain issues and more drastic treatment, e.g. surgery, is not required.

P.S. I'm a very tall, skinny person. I've had lower back pain for about 12 years now. I seem to recall having an X-ray of my spine about 5 or 6 years ago and being diagnosed with a slight case of scoliosis. My hips have always 'stood out' from my body (e.g. every so often I walk into a door or wall, smashing my hip bone). So I wouldn't at all be surprised if my spine and/or other bones in/around my pelvic region are misaligned.

One more thing I feel I should mention:

I read a lot of posts on here (and similar websites) with people complaining about rectal pain in different areas of the rectum. My rectal pain always feels like it is right at the tip of the skin. For instance, when I apply the Xylocaine ointment and I touch my rectum the parts that I touch hurt. It's not as if I experience pain deep inside my rectum or anything like that. I'm not sure if this is relevant...

Kinec, you scared me a bit with your comment about intense physical therapy. The reason is that PT pushed me over the edge from mild pain to severe discomfort. So be careful and don't let your therapist talk you into experiencing a lot more pain before you can get better. If your nerve turns out to be entrapped, stretching can be very harmful as I learned the hard way.

Regarding nerve supply to the external anal sphinctor you can check out this link:

http://www.dartmouth.edu/~humananatomy/ ... er_36.html or http://tinyurl.com/6dlx3j3

Here is a portion of what it says:

"The sphincter ani externus is supplied by the inferior rectal nerves and by a perineal branch of the fourth sacral nerve (S.N.4)"

The inferior rectal nerve usually branches off the pudendal and is typically considered one of the 3 branches of the PN. So your description of pain externally is consistent with possible pudendal neuralgia although obviously no one can make a diagnosis over the internet.

Image of external anal sphinctor:

http://www.nlm.nih.gov/medlineplus/ency ... 0154_1.htm or http://tinyurl.com/69s7b5v

What is cannabas?
Mom

Marijuana. Guess that's not much help in your daughter's case.

Oh, OMG I am so glad I aksed here and not at the Dr. I feel so dumb.... But yes Violet no help for us!