Health Organization for Pudendal Education

DES:

Here's a list of Ontario physiotherapists specializing in pelvic pain. Dr. Gordon has very high regard for Nellie Faghani in Richmond Hill, and Carolyn Van Dyken in Cambridge. I tried six sessions with Laura Disenhaus in Toronto but I quit because her therapy flared my pain instead of helping it. Physio doesn't work for everyone, as you can see.

http://prc.canadianpaincoalition.ca/en/ ... _pain.html

Also, I have taken a mindfulness meditation course for pain (in Toronto) and did find it very helpful, especially during pain flares. ("Breathe slowly and deeply. Feel your abdomen slowly rising and falling . . .Zzzzzzzz. Very calming. )

I'm so glad you found Pudendal Hope. You have come to the right place. As you can see we're not shy about offering advice!

I just wanted to say a bit about RLS - I've been dealing with this for the last few weeks. I don't know if any of this will be useful to you, but I thought I would share just in case.

I have found that a 400mg magnesium capsule taken at bedtime really helps me - it is interesting because I went looking for these to replace movicol/miralax as I was having trouble getting the balance right with that stuff, and discovered that it also helped the RLS. Also - I expect you've already discovered the thing about exercise - rather than walking around when it strikes, I stand holding on to the footboard of the bed with feet shoulder width apart and go slowly up on my tiptoes, hold for a couple of seconds, then down slowly. And repeat about 15 times. I've also been doing this just before going to bed, if I remember - I think it helps....

Pregabalin is supposed to help with RLS, as well.

With regard to TENS for PGAD - I used TENS on and off for quite a while, but I didn't have PGAD at that point. If you try it, I'd make sure you have one that is as fully tuneable as possible. I've had neurostimulation mentioned to me as a possibility for pain management, and apparently this can sometimes make PGAD worse until they get it properly adjusted, wouldn't be surprised if it was the same with TENS. Oh - and you put the electrodes one on each side of the spine, about 2 or 3 inches apart, on your lower back over the sacrum - the pudendal nerve comes from S2,3 and 4 if I recall correctly, and that's the nerve that's causing the problem, basically.

No experience with the Mindfulness programme - I haven't heard of this - but I can unreservedly recommend CBT.

DES, you might find this topic on the forum helpful (click on this link): http://www.pudendalhope.info/forum/view ... =48&t=1590

None of the mind/body stuff helped me at all and the TENS unit made PGAD worse before I had surgery. But everyone is different and I think all of it is worth a try.

Take care,

Violet M

Thanks so much for the link, Violet.

Is there a difference between neuralgia and neuropathy? If I remember correctly, the doctor explained neuralgia as an irritation/damage to the nerve, and neuropathy as the nerve was already damaged and was dying. Did I misunderstand him?

He thinks my PGAD is related to neuropathy.. Sometimes I do get desensitization on the labia and clitoris, and if I am able to climax it takes forever.. seriously, sometimes like 1.5-2.5 hours.. Who has that kind of time??

I'm seeing my doc in a few hours to get a synopsis of the MRI report, (nothing of significance was found), and to see if he's put in my referral to the local doctor here who treats pelvic disorders.. I'm also asking for a referral to a psychiatrist because I am having a hard time coping with PGAD and I had an unrelated extremely traumatic experience happen to me last week.. I need some relaxation techniques and some coping mechanisms to deal with the stress of it all..

I'm also going to ask about the magnesium supplements too. I haven't had RLS for almost two weeks now, but it can't hurt to find out in case it starts again.

Thanks if anyone can help me out here!

Hi DES - yes there is a very distinct difference between neuralgia and neuropathy - neuralgia simply means pain from a nerve - neuropathy means damage of some kind to a nerve, it does not imply that the nerve is damaged or dying - although it would include that definition, someone who had a nerve that was damaged or dying could be told that they had a neuropathy of a specific nerve.

Although - damaged or dying nerve? - that's a little puzzling in itself, nerves do heal after all, albeit slowly.....

Gee, it seems like it's been ages since I last came to these boards. Life has a way of getting busy on me somehow..

I took on a third job back in February. It was time to replace my furnace, and since my money tree didn't survive the winter, I had to find a way to make this happen.. I seriously don't recommend three jobs to anyone who isn't young and spry anymore! Hopefully I can go back to two jobs in June and get some of my "life" back! (Not that I could claim to have one before this!)

Not much has changed for me. I'm 10 months now with this issue. I've been getting hip pain the past couple of months. My doc thinks it muscle-related, not in the joint. He did those 'lie on the exam table and let's see where it hurts' stretches. I know it hurts to sit or lie on that hip for very long. I do a ton of standing everyday.. all my jobs have me standing for extended hours.

The Lyrica I'm on has caused a lot of weight gain. I thought it was because of my home invasion, and me stress-eating to cope with it, but I guess that's only part of it. I find the confusion and tiredness it causes me are also troubling.. Sometimes I substitute a word for the one I'm trying to say, other times it's on the tip of my tongue and I can't get it out, even though I can picture the item, and there are times I start a sentence midway, only to have my train of thought derailed! I find the sleepiness bothersome. If I've got a good night's sleep (for me that's about 6 hours) I can sometimes work through it, but most times I have to nap. It kicks in anywhere from 1.5-3 hrs after I take it, depending on how much sleep I've had.

I've fended off a couple of pain cycles though. The Lyrica does seem to help with those, which is why I'm taking it to begin with. If the pain comes, it isn't as intense and doesn't last as long as before. The arousal is still my main issue though. It's a trial being turned on for so long.. I'm waiting to hear back from the Pain Clinic but I know it can take several months to hear back.. Until then I just wait.

I don't have as much time to visit here and do my research, and it seems like my doc is waiting for me to bring him new information. Perhaps when I go back to two jobs again I'll find the time to visit here more often.

Thanks for reading, I guess I just wanted to update you on my situation. Wishing you all pain you can manage, or pain-free days!

Very good to hear from you DES. Just reading your update made me feel tired I think you are a wonder. . . 3 jobs!
It does sound as if the lyrica is helping, albeit with 'manageable' side effects.It's such a trade off isn't it. Glad it's getting you through to some extent tho'.
I remember Calluna saying that tramadol (slow release) helped PGAD. Have you tried that?
Take care,
Helen

Hi Helen!

No I haven't tried that yet. I must find time to do some research on it before I ask my doctor about it. You're right about the trade-off. If 75mg of Lyrica 2x day can knock me on my butt that easily, I sure wouldn't want to have to increase the dose.. I'd be a zombie for sure.. or comatose! I must admit that my sleep isn't that great, so maybe the sleepiness is exaggerated because I average about 4-5 hours/night!

I'm still waiting on results from the sleep clinic I attended back in March. If I'm able to research Tramadol before I see my doctor next, I'll ask him what he thinks about me switching to it.

Thanks so much for your response. I'm grateful for suggestions and miss having time to research as much as I did when I first got this condition.

Hope you're doing well and managing okay too.

DES,

If I were you I would get an MRI of that hip. I think that many of my pelvic pain problems are related to an undiagnosed hip injury about ten years ago.

I took Lyrica along side tramadol btw. So there maybe no need to switch, especially if lyrica works for you. There have been a few people who have had their pelvic pain linked to hip problems so Lernica's suggestion is a good one. AND thankfully they are more easily identified too.
Helen