Health Organization for Pudendal Education

Hi Jenny,

I hope that your experience with Dr Gordon goes well. I find him to be really nice. He listens, suggests without being pushy, and provides you with enough information that you want to go and do your own research on what he's suggesting.

I'm happy that he got permission to open up the PGAD study again to include me. Anything that'll help doctors and patients suffering from this in the future..

I go to see him again in early April for my MRV, then meet with his nurse for the PGAD study..

Like Violet suggested, ice can become your best friend. When I get a pain flare I use a bottle frozen with an inch of rubbing alcohol, then filled with water to ease the pain. Works really well for me.

Thank you everyone. I am waiting to see Dr Gordon, and have not taken meds yet, but have Lycira from my Doctor but scared to try it. I went to a physio who said I to have a hypertonic (is that the term?) pelvic floor -but I was so tight she really could hardly do any treatment. During my second visit I just cried and cried and haven't went back... I felt like it was never going to work if she barely do anything...

I am not sure I can do this much longer.

Hi Jenny,

Just saying hi and wanting to reiterate everything that Violet has said. Everything Violet has advised is spot on as per
As she mentioned it seems that many people hold tension in their pelvic floor, with me it's between my shoulder blades for instance.

If you can get to see a good pelvic floor physiotherapist (not saying yours wasn't good btw) so if you can go back, they will be able to work on releasing the tight pelvic floor muscles. Many people find that this release therapy is all they need. I'm not saying it is always a quick fix, unfortunately but the fact that you do experience this pain with therapy does highlight the fact that you probably do need some help with this.
You may need to start some medication first however, lyrica has also helped many people here, including me If you try the Lyrica you will be able to give Dr Gordon some feedback on how this medication works for you. It is usually teamed with an antidepressant, as together they can be more effective, again this is what many people would agree with here (including me) I would always advocate to start taking one drug and titrate up a little if needed, before the other so that you can assess any pain relief well, individually. This seems to be what your doctor is doing with you, prescribing the Lyrica. Are yours 25 mgram doses? Give them a try. . . .you will feel a bit spaced out, well many do anyway, but this does pass in a few days until you start slowly increasing the doses.
There are a few people on here from Canada btw, but everyone is so nice, friendly and helpful I hope that you realise that you are not alone at all with pelvic pain and PGAD. I only have PGAD intermittently, admittedly.
Glad to here that you have an appointment with Dr Gordon soon, let us know how it goes.

Take care,
Helen

Thank you Violet, Helen and DES,

I come on and off this site, because to be honest I find it makes me more hopeless and discouraged when I read people are not finding cures.

I did go to a new pelvic floor therapist Helen -thank you for the advice -and thankfully she is amazing. She agreed my pelvic floor is incredibly tight, she is recommending an MRI as well - like I have read here. I will continue to see her. She also recommended a therapist.

I tried Lyrica but didn't like the side effects. And what I don't understand is that I don't have pain -just the PGAD...so what meds will help that!?! My Dr now wants me to try Cymbalta -which I have also read about here.

The physio discussed how I have to let go of the thought of 'one magic cure' and maybe there isn't one, and that I have to come to accept that. I cried even harder at that -I just can't get there, I would rather have cancer and die naturally than this.

Are there any support groups -before I would have never considered them -but I am desperate for help. Other than finally having the courage to tell my Doctor and now different practitioners (which give me great anxiety), I haven't and will likely never tell anyone else. But I think I could talk to others who do.

DES -what does Dr Gordon do to help? As I am currently on his waiting list.

I appreciate everyone's kind words and support.

Thanks so much,

Jenny

Jenny, different meds help different people. Antidepressants seem to be good ones for PGAD (especially if you don't have pain) since they tend to dampen sexual feeling. Some people get good results with tricyclic antidepressents. Cymbalta may help too -- you just have to work up slowly on these and it could take several weeks to get the full effect.

I went through a period of time with just PGAD. A tight pelvic floor could definitely irritate the pudendal nerve -- or the other way around. Hopefully your therapist can help you sort this out. Glad you found one you like.

Take care,

Violet

Hi Jenny,

Sorry, I haven't been on here for awhile. Dr Gordon can do tests to see what area's affected, he can prescribe meds for you (the Cymbalta is quite likely to dampen your PGAD once you get to a high enough dose), he can refer you to a physio, or to Mindfulness classes, or if you do get to the pain stage (I sure hope not!) he can prescribe a cream for you. Maybe you'll be a candidate for one of his studies.

I didn't reach the pain stage til I'd had PGAD for about 9 months to a year. First it was 'only' breakthrough pain for a day to 3 days, then more intense & a longer duration. When I hit an 8-day pain cycle, I started Cymbalta, & by that time I was well into depression. At first the Cymbalta just made it harder to have an orgasm, & did nothing to make my arousal diminish. Now I'm on 90mg per day, & my PGAD is mostly manageable. I went through a 6-week pain cycle interrupted only by my periods, when I was on 60mg per day. Since starting 90mg, I can say the pain cycle has been broken more consistently (I still get a day or two of pain here & there).

Dr G had prescribed a cream for my pain. I haven't tried it yet but I know I will. It's got lidocaine & gabapentin in it, so hopefully it will help when the time comes.

Good luck on your journey & I hope things go well for you.

Dr. Allan Gordon, Neurologist and Director of the Wasser Pain Management Centre at Mount Sinai Hospital in Toronto, is putting together a proposal for a Centre for Pudendal Nerve Disorders at the hospital. Its purpose would be to increase the ability to diagnose and treat patients with pudendal neuropathy in a timely and efficient manner. The centre would provide consultations, administer pudendal nerve blocks and botox injections, and perform pudendal nerve decompression surgery. At present there is no surgeon in Canada who performs this surgery. His proposal includes training a urologist to perform the surgery.

Dr. Gordon would welcome comments on his proposal, particularly from patients in Canada. Very brief comments may be sent to Dr. Gordon at the following email address:

gordonal2013@gmail.com

He would like to use patients' comments to support his proposal. Privacy is assured upon request.

Date: February 12, 2014