Possible new sufferer looking for some help please

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I can't be doing with stopping life!

My wife reminds me to be positive. She knows about pain as she has osteoarthritis in the spine. So it's a blow me getting this as I'm the sole driver.

Having had little help to sort out a referral from the Dr because he says he is too busy and so is his secretary. I had to contact Dr B's clinic and tell my Dr how to refer me. Crap service! So will chase him next week to see if that has been done. There is an 18 week policy here for treatment......the clock starts when the referral is received by the specialist dept.

Just spoke to a Pelvic Floor Therapist who can treat men with this condition. So I'm seeing her on Monday at my own expense. She says there are a few things that can be done. So that has made me feel more positive.

I think the hardest thing is being positive and being in control. These are things that have previously tripped me up with my PTSD. So I need to meditate too and clear my mind. Whilst continuing to do some exercise for the same effect.


So if I continue to exercise........run, yoga, light weights, various exercise machines, push ups, sit ups, walking etc etc What is the down fall of doing that Vs loafing around the house and spending too much time sitting at the computer or in front of the TV?

Yeah, it's hard to stay positive in the face of all the things you love suddenly being unavailable. Had a bad time last night but today - had some kind of almost electric shock feelings in the penis however I'm much better and there's barely any problem at all... It's almost as if the condition has completely gone away, I've been sat at my desk all day. I know it will be back - it just keeps fluctuating. I agree re doing exercise. I sometimes go out of my mind a bit trying not to go to the gym or go for a run... As you say it's a toss up - do I go for a run and make myself feel mentally much better but risk setting things off again? Or do I hold off everything and sit at home chewing my nails fretting about things...?

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I will still explore pelvic floor therapy. But I'm not sure I want to start that before a diagnosis or not? What do you think? Will it over complicate things?

There are different types of pelvic floor therapy with some being more specialized toward pudendal neuralgia and others toward pelvic floor strengthening. With PN, the pelvic floor muscles are typically overly contracted and tense as opposed to some types of pelvic floor dysfunction where the pelvic floor muscles are just weak. I actually received my diagnosis from a PN knowledgable pelvic floor PT when the docs could not come up with a diagnosis. Pressing along the course of the pudendal nerve caused pain and a very bad flare-up afterward which confirmed the diagnosis. It also showed that the obturator internus, levator ani, and piriformis muscles were in severe spasm. So, I can't say what's right for you but for me seeing the pelvic floor PT was well worth it.

Violet

I think mine has something to do with the pelvic floor... I sometimes get kind of uncontrollable contractions at night, think my floor must be very tight

[Roger]

Right I've seen a Pelvic Floor Therapist who is PN aware and experienced. I had a very thorough assessment, internal examination and external.

Some good news and some bad Lol

Good news - My pelvic floor is normal and not in spasm as I feared. It's working as it should and in fact is very good! No internal trigger points found and no external trigger points found either.

Bad or should I say expected news - PN is the diagnosis. But the cause is chicken and egg syndrome. Is the sacrum and the nerves causing the nerve flare or are the Piriformis causing the nerves to flare? Either way my horse riding accident is the likely cause.

She was pleased I was planning to see Dr B at UCL as she has had some dealings with him and thinks he is very good.

Exercise - No cycling, carry on doing what I want and if it hurts stop and stretch stretch and stretch again (3 times a day). Yoga is good.

Got to buy a book - Heal Pelvic Pain by Amy Stein.

Got to eat more pears to help the gut.

Will see her again in Jan just for a follow up as there is no treatment she can do for me at this stage unless things change.

[janetm2]

Roger,
Thanks for the update. Glad to hear you have a clear direction from the PT assessment. Sorry it did turn out to be PN but at least you are getting more information and the exercises will help.
Janet

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After feeling better on Monday I went for a couple of long walks on Mon evening and Tue morning and things turned bad again. Had pain in my right testicle and in the past hour or so I've had my 1st experience of persistent sexual arousal... It has been the worst symptom so far. My whole body was tingly and almost shaking, felt like I was on drugs. It seems to be passing now but for a while there I couldn't concentrate on anything.... How do you all deal with this?!

[Roger]

The persistent and often acute arousal sent me stir crazy tbh and nearly cost me my marriage!

But if I had known what was going on, like you do, I could have dealt with it a hell of a lot better by talking to my wife and getting her to read web sites like this one and also http://www.pelvicpain.org.uk/ and we could have dealt with it together. But I didn't. But that is what we are doing now and thankfully we're back on track and I'm in control again.

Anyway I've just been to my Oesteo and had acupuncture to both piriformis again and also this time to my right Hypertonic obturator internus muscle. Also had both SIJs manipulated back into place. So I'm hoping this will create some space in the Alcocks canal and take the pressure of the prudendal nerve. Fingers crossed!

This was a treatment mentioned in an article taken from the Pelvicpain web site above, called The role of Physical therapy in Myofascial pelvic pain syndrome.

I had already identified that my right OI muscle was sore, as I could feel it pulling if I bent down.

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The feeling was awful. It wasn't entirely sexual, it was literally a sense that every nerve in my body was tingling, I could feel it in my back, my teeth all over. It felt like I was falling, like I was on a roller coaster... I was at work and everyone else around me was carrying on as usual and I just didn't know what to do. Couldn't concentrate very well. It started to subside after an hour or so but lasted the rest of the day on and off, albeit to a lesser intensity. I was in a meeting at 4.30pm and had to do some talking which was quite difficult. Got home and after a glass of red and a short walk it kind of went away but came back a bit later. I drank loads n loads of camomile tea which normally settles me and makes me sleep, it seemed to relax my muscles but not my nerves, I could still feel it buzzing a bit. Took me a while to get to sleep and this morning seemed to have completely gone and touch wood, is still gone today. In fact I feel almost symptomless again today....

[Roger]

Just a quick update.

I'm continuing with yoga, running, general exercise and stretching. Acupuncture is helping the muscle spasm.

Not convinced that Gabapentin is making any difference at the dose I'm taking. Not increasing it as it gives me headaches. But may stop it over Christmas and see what happens.

Keep getting mega sweats at night and wake up dripping even though it's cold. Checked my temp and it's normal. So it must be the bodies reaction to the nerve stimulus.

Still waiting for an appointment to see a specialist. Till then a positive mind is the way forward!

[janetm2]

Roger,
Keep those spirits up! Sorry the Gabapentin is not as helpful, generally they say hogher levels may be needed but not if the side effects are intolerable. Hope you get to a specialist soon to see if there is anything else that could help you get over this.
Janet

[Roger]

Well I'm still continuing with my plan and I'm no worse and may even be a little better? I've had a couple less night sweats and sleeping much better.
I'm working at lots of deep breathing, long stretches and lots of walking plus my usual exercise program. Still no meds but I may occasionally use anti inflammatory meds for 7 - 10 days, if needed.

I'm still convinced this is a muscle spasm problem putting pressure on or squeezing a nerve. So got to lengthen those tight muscles and train them to relax and the tough bit is stay relaxed.
It could take months or it could need a complete lifestyle change forever. I'm certain if you start and give in at the first hurdle then it will be 3 steps backwards.

So onwards we go lol.