Health Organization for Pudendal Education

As I suspected, nothing undue was found on my MRI. No Tarlov cysts could be detected, no nerve impingement was apparent. I didn't get the whole report, but I do have adenomyosis, which does explain my overly-long and heavy periods.

I'm trying to coordinate my ability to attend an assessment class for Mindfulness but I'm not sure if I can swing it this time around.

Dr Gordon also has me in mind for a Botox study, hopefully with the medication provided, as I have no insurance coverage. I did say I'd consider it if that was the case. He's suggesting I wean off Lyrica (I'm only on 25mg twice per day) and switch to Topamax (sp?) instead, as this would likely help curb my PGAD.

I have to call him back to make an appointment for February to see him after I see my own doctor.

I really like that he allows my hubby to come in to my appointments with me, as it offers another set of 'ears' in case I forget things.

Hello DES,

Sorry there wasn't anything clear cut but at least he is offering you some options. I'm assuming your pelvic floor must be tense if he is offering you Botox.

Good luck with the new medication -- I would be interested to hear how it works for you.

Violet

DES,

Dr. G offered me Botox injections too to soften the pelvic floor muscles but I declined because I made so much progress with pelvic PT (Nelly Faghani in Vaughan). Have you been assessed by her yet? She's very very good and very committed to relieving pelvic pain through PT.

Hi Lernica. No, I haven't been assessed by her. Would you be able to let me know the cost by PM? Finances are a bit tight at this time of year, but possibly after the New Year I might be able to manage something..

Violet, I've thought all along that tension/stress probably have a lot to do with my PGAD. I know I've had a lot of incidents that could also have contributed to it too, but we all hold our tension somewhere, and mine seems to be in my jaw, my shoulders and my PC muscles.

I haven't done my research on the Topamax yet, but it could possibly be a help if the side effects aren't too horrendous.

Hi DoubleEdgedSword.

If you do decide to try Topamax I suggest that you start at a very low dose and increase it slowly. I tried Topamax twice. The first time I increased it too quickly and experienced a number of unpleasant side effects. The second time I increased the dosage very slowly and I didn't have as many problems. The drug didn't work for me but I was taking it for pain, not for PGAD. I hope it helps.

Greeneyes

My pain seems to be okay with the Cymbalta and the very low dose of Lyrica I'm still on. Apparently the Topamax can decrease "desire", which is why Dr G was thinking of putting me on it. I've done some research on it, and yikes! Lots of side effects, and it also interacts with my Metformin, that I've recently started for diabetes, so it'll be a 'no' for Topamax..

Sorry I've been missing in action so long. Just before Christmas I lost my long-time pet budgie (parakeet) to a tumour, and I've just got a new parrotlet that we're getting used to. Life keeps throwing those darn curve balls at me, but if I get up one more time than I'm knocked down, guess that makes me a winner.. sorta!

DES, glad to hear some of the meds are helping a bit. You are smart to be doing the research on the meds before trying them.

Hope your new little parrotlet will learn all of the appropriate social skills soon.

Violet

Good luck DES,
Managing all of this certainly makes you a winner. The same goes for all of us I think
Take care,
Helen

Hi Helen & Violet!

Yes, we're all winners if we keep putting one foot in front of another. The progress might not be as great or as fast as we want it to be, but it's progress nonetheless..

I'm having an arousal flare, not to be confused with a pain flare.. I don't think the Cymbalta has that effect of dampening 'desire' for me. It's helped greatly with the pain, because I've only had about 3 or 4 painful days since July, all of them the day after sex..

My little bird is a firecracker.. He's a biter & territorial of his cage, so I think he's going to be a handful! He'll accept head scratches and hand feeding, both through the bars of the cage, but he's already destroyed one toy and is starting on another.. Better them than my fingers, I guess!

My aim is not only to get him to speak a few words with time, but to become somewhat of a gentleman too!

DES, maybe having the fiesty bird to deal with is a good distraction. I always found distractions to be a good thing.....

Violet