Health Organization for Pudendal Education

Hello,

Nearly 1.8 years ago, I fell badly. Soon two medical pain problems began in the
same month and in the same general area of the body. And because those two are
so close together (even though I can tell them apart usually but not always),
it's been confusing to me and to MDs, etc. The one that started first is a rear
upper right leg musculoskeletal problem involving the right buttock. It wasn't
diagnosed for quite some time because very soon after the right leg problem
began, the 2nd one, which was much, much worse, suddenly began in the core of
the pelvis. Soon I had, from the pelvic core pain problem, a tingling and
irritated sensation in the right half of the scrotum. It remained there some
time and then became mainly a right side and right buttock problem though over
time, the anal area and a strip on either side of the body's midline -- this is
the perineal area -- became involved. I suffer burning pain at times in both
buttocks, and really ugly, deep aching in the anal-rectal areas. I've also
suffered after the first few months had passed, and only on 1 day, an
out-of-the-blue hour-long period of intensely painful but extremely brief,
rapid-fire electric shocks to the anus. The pain of those shocks was way over 10
on the pain scale. I was laying on the floor watching TV when this happened. I
found that the slightest movement of my body would trigger more of these
horrendous electric pain shocks at the anus. [I'm glad they never returned again
after that single hour of torture!!]

Aside from the burning pain, I describe the anal/rectal aching pain as a deep,
hurt, wounded feeling which can be sickening and nauseating for me.

And yes, I'm happiest sitting on a toilet seat or standing (though in this year,
there's more pain while standing and walking and this is distressing). I sit on
two foam cushions but have been trying to stand more even though I have meralgia
paresthetica in the right leg. [This neurological problem causes numbness in the
upper front of my right leg when I stand and when I walk. The numbness in either
walking or standing can become pain level 9.5 so this forces me to sit which
makes the pain end.] A friend in town reminds me often that sitting is the new
smoking.

I keep in the freezer two flexible blue gel packs which I cover with cloth so I
can sit on them. This relieves the pain for a while.

Long ago I found that bending forward at the waist caused instant burning kind
of pain in those 2 strips of the perineum extending slightly down each leg. I
discovered that two swim strokes -- the elementary back stroke and the breast
stroke (both employing the frog kick) -- had to be dropped because they caused
delayed aggravation of pelvic pain.

Is a delay in a worsening of the pain -- a delay by 1 or 2 days -- common in PN
problems? I ask because so many physical things I've done cause this same
delayed pain: bending/lifting/moving moderate weight and heavy weight boxes, all
sorts of exercises (no longer done of course), and other physical things bring
this awful pain long after the work or physical activity has ended.

The first p. t. I saw had me doing various exercises but they didn't help. With
her gloved finger, she checked the inside muscles and found two to be somewhat
tender (but I didn't scream when she pressed on them). She remarked that I can't
have any serious nerve damage inside or else I'd scream when she pressed on
different internal areas. I wonder if this is true. Is it? Can someone's gloved
finger pressing on some internal tissue or nerve cause sudden horrible pain? [A
second pelvic floor p. t. I've seen recently also checked out internal tissues
and said the same thing to me: I didn't scream so no nerve damage must exist!]

At the 1st meeting she said she's created her own thinking about pelvic pain and
has drawn ideas from various researchers and MDs. Since she has never heard of
Stanley Antolak, I wonder how informed she is. She did say something interesting
about the male pelvis. She said that so many men are very close to a pelvic
danger line beyond which they're in big time trouble and that the pelvis of
these guys simply will not reset by itself: it takes a great deal of effort to
restore things so that the man drops below that danger line and has far less to
no pelvic pain.

This 2nd pelvic floor p. t. is a very theoretical one. She talks the whole
session and, in 7 visits, has only inserted a gloved finger in two sessions.
[She found some tight muscles too and I have to request her notes-- I can't
recall what she said is a problem area. I think she also found something in the
left front not so good.] She told me she only wants me to walk on grass and not
on sidewalks nor streets. And she said I should go to the pool to walk forwards
and backwards. [She gave me a pass to a pool which is the same depth from one
end to the other so longer walking is easy.] When I told her recently how my
physical pain is often 8.5, she said that men often have such terrible
high-level pelvic pain and they don't get proper drug relief for it. I'll soon
ask my doc for something even though I've only tried a few drugs. [Though I took
it for 1 year, I didn't like the out-of-the-blue heart pounding caused by
amitriptyline 75 mg/day which I stopped many months ago. A druggist told me that
due to my age and due to the heart pounding, I should not be taking
amitriptyline. Other relatives of amitriptyline only caused agitation and
restlessness: I couldn't sleep.]

MDs have told me I suffer from pelvic nerve damage and from peripheral nerve
damage. But the doc who said the latter changed his mind after some months and
declared I suffer from CRPS, complex regional pain syndrome. I told him I don't
have any of the signs nor symptoms of CRPS but he said that's irrelevant!

An MRI scan (in a 1.5 T MRI machine) done some months after the misery started
showed nothing wrong except "degenerative changes at L4/L5". [I'm over 60.] Two
neurological studies were also done the same month as the MRI. The right leg
nerve conduction study showed nothing wrong and the EMG done only at the anus
also showed no pudendal nerve problem(s). [But I understand that the entire
pudendal nerve tract has to be studied, not just a study done at the anus.
There's a neurologist in my city who does the full blown PNMLT and I'll soon see
my doc hoping to get a referral to that neurologist.]

At the top, I mentioned that two medical pain problems started in the same month
and in the same general area of the body but the first one that started was soon
overwhelmed and over-ridden by the 2nd problem. The first one was sort of
forgotten due to the sudden start of the much worse pelvic core pain problem.
Well, early this year I looked into that first problem again and discovered what
it was: a high hamstring-tendon-sitbone problem. I told my doc at the time and
she agreed. She sent me to p. t. but sadly, the p. t. to heal the high
hamstring-tendon-sitbone problem really aggravated the pelvic core pain problem
so I have no idea how I'll heal from the hamstring one. [When I met with the p.
t. and while I was standing, she pressed really hard all over the right sitbone.
She hit a spot which was incredibly painful. When I told her about that sudden
great pain, she said "you might have ischial tuberosity pain syndrome which is
extremely difficult to heal from".]

Well, that's the sad news about my body. I hope I can find out useful things
here from you nice people many of whom are suffering terribly too.

Hugh,
Welcome and I think others will be able to help you out better than me as they have been around longer and probably have some other similar issues. I have a few comments as all my pain started in the anal-rectal (left side). I was lucky after going through some other doctors (colon rectal, pain specialist spine, etc) to get with a PT group that realized I had PNE. At this point you may want to try some pain medicine specific towards nerve pain. Amitriptyline cured the shooting pain I had in my large toes similarly to what you described as pain shocks over the 10 pain scale. The amitryptyline is also being used for pelvic nerve pain but that did not work for me because I couldn't handle any more than the dose I was on (20mg per night and raising that caused blurred vision). One of the other medicines is helping me and that is Gabapentin/Neurontin (1500mg per day, it takes a while at raising 100mg every two days and I did it in chunks up to 900mg before surgery then the rest after). I wish you the very best and hope others will provide guidance.
Janet

janetm2 wrote:Hugh,
.........At this point you may want to try some pain medicine specific towards nerve pain. Amitriptyline cured the shooting pain I had in my large toes similarly to what you described as pain shocks over the 10 pain scale. The amitryptyline is also being used for pelvic nerve pain but that did not work for me because I couldn't handle any more than the dose I was on (20mg per night and raising that caused blurred vision). One of the other medicines is helping me and that is Gabapentin/Neurontin (1500mg per day, it takes a while at raising 100mg every two days and I did it in chunks up to 900mg before surgery then the rest after). I wish you the very best and hope others will provide guidance.
Janet

Thanks Janet for your comments and help.

I did try gabapentin very early in this problem but it caused really bad diarrhea which continued for a few days after my super brief trial with that drug. I told my doc (at that time) and he said that due to the bad diarrhea, I cannot take that drug. But months later he said to me "Were you sick at the time when you took the gabapentin?" I said "No, I wasn't sick then-- I only had the pelvic pain and nothing else." He said I should be using gabapentin but I really don't want awful diarrhea caused by that drug. [A friend in town told me that some friend of his took gabapentin, had teh diarrhea but then the diarrhea ended. Is that usually the case with that drug when it does initially cause diarrhea?] Recently another doc told me that since I've tried a few drugs, I'm now a candidate for Cymbalta. So I'll tell my doc about this tomorrow.

On my own I found out about a drug called Nabilone (aka Cesamet), a synthetic cannabinoid that helps one deal with neuropathic pain. But I suspect that since I live in a conservative state and with MDs having so much fear from prescribing a controlled substance, no one would let me test that drug. I'll ask though tomorrow when I meet with my doc.

The recent p. t. I've seen told me about diazepam suppositories-- she's properly worried about all the dreadful physical pain I endure. She thought I would probably have to use these only now and then and not every day. This is a compounded item and there's a single pharmacy in my city that compounds this. I know this drug is one of the benzodiazepines which are addictive (but maybe not if one doesn't use the suppository form daily). I'll tell my doc about this tomorrow. Has anyone used diazepam suppositories?

I forgot to mention in my first post that the recent p. t. I've seen told me she doesn't want me to do anything physical except walk on grass and walk forwards and backwards in a pool. She said "no swimming, no yoga, no stretching, no weights, no machines". I think she should have included bicycling which she did grant to me only if I didn't ride hard and didn't ride up hills. But even though I rode my bicycle very infrequently, sometimes I could get away with no worsened pain (it was moderate pain before riding) and after other very infrequent rides, the pelvic pain was horrendous, way over 8.5 on the pain scale. I found that if I did nothing at all for weeks except walk on grass and infrequently go to the pool for walking in it, the pain would go to moderate or even a bit better than moderate pain level (and this happened with no drug for pain!). I realized I have to be very careful about trying to avoid physical things. She's also recently told me I should not be lifting anything over 8-10 lbs. But I live alone with no one around to help, so I find it nearly impossible to avoid at all costs doing one physical thing or another (such as carrying grocery bags, or moving something, etc.)

Hi Huge,
Welcome to HOPE. You have certainly been pro-active, but with the pain you describe what else can one do??
You need to find a doctor who is PN aware, as you do sound as if you have a lot of similar symptoms. There is a list on the home pages, hope there is one near you. PT can also be a good help especially if the problems are from a slow onset (or so it's reported ) but if you have suffered a trauma 1.e. fall it may be that you have PNE, pudendal nerve entrapment rather than PN which is an irritation of the nerve. The consensus seems to be that all the physio in the world won't have much effect if the problem is true entrapment.
An ordinary MRI scan will not show any nerve impingement significantly although PN patients have had some good results from Hollis Potter's imaging in New York. Details also on Dr.'s details on home pages. This may even be a good place to start if you are able.
I wonder if your deep buttock pain is from the piriformis muscle? ? You may well have two different things going on independently but piriformis syndrome(PS) and PN often go together usually PN and then PS.
I had the deep buttock pain (after a fall and huge muscle spasm) and the pudendal issues came along a bit later, maybe a bit like you.
Oh yes I've had those zapping electric shock pains too. Mine are usually sciatica related (down my leg) and I have no idea what sets them off. Had one for 3 and 1/2 hours once about every 5 - 10 minutes apart. They are frightening because the pain is uncontrollable. Thankfully they don't happen very often .
Another drug that a few people take is lyrica, it's very like Gabapentin but as everyone is different you may react better with this drug.
I know others will have some good advice for you on here,you have come to the right place at least.
Take care,
Helen

Hugh.
Sorry to hear about the diarrhea and I wouldn't want to try that again! I have not experienced that with any drug and had it go away when trying again so I would agree with trying Cymbalta or lyrica with hopes of less or no side affects. I have not tried the suppositories and I agree the contolled substances can be tricky. This is where to some extent a pain specialist(physiatrist) can help. I switched my primary care dr and the new one was concerned about writing prescriptions for oxycodone so know I go to my pain guy yearly so he can say it is okay. Before he said I would only need to see him if I needed to raise the amount. Talk it out with your doc and see what he says. Also stay off the bike that is how a good deal of folks get this problem. Good luck and glad to help someone else.
Janet

Hi Hugh,

Welcome to the forum. I hope you will find some answers here.

To answer several of your questions --

1. Yes, there is often a delay in the pain that occurs a day or so after the activity.
2. No, you do not have to scream when the nerve is pressed on in order to have pudendal neuropathy. I never screamed during an internal exam but it was painful along the course of the nerve. If you are already in 8.5 pain, going to 10 pain isn't likely to make you scream, right?
3. Yes, diazepam suppositories have been very helpful for some people with pelvic floor in spasm.
4. I hope you can find a PT who will evaluate your pelvis for misalignment and who is also trained in treating people with PN. Since you have pain primarily on one side that is more suggestive of a nerve entrapment than if you have bilateral pain according to the Nantes criteria for diagnosing PNE. I had deep buttock pain and some other symptoms similar to yours. The deep buttock pain was the piriformis muscle in spasm due to a pudendal nerve entrapment that essentially made the whole pelvic area muscles go into spasm. So, I don't know if you have PNE but I can say a lot of your symptoms sound the same as what I had.
5. If you can get to Dr. Potter in NYC for a 3T MRI that might be helpful. Or someone else posted about a Dr. Filippi. http://www.pudendalhope.info/forum/view ... =69&t=1753

Take care,

Violet