Health Organization for Pudendal Education

I will be emailing the Pain Clinic in the next day or two to see if they got my doc's referral yet. They should have if he filled it out and faxed it to them. He's away for two weeks..

I won't be getting upset with the clinic at least until I get my foot in the door. I think it's incredibly silly not to contact the patients and let them know they've received the package but are still waiting on the doc's referral.. If the doctors don't know how things have fallen apart with the communications system, won't they just go on believing 'nothing is wrong'?? Had I know that was the delay all this time, I could have jogged my doc's memory, or they could have contacted him to say they'd received my package, but hadn't received his referral yet..

I plan to be patient in between steps though.. Once I think they've had enough time to receive something and deal with it, I'll be following up on it with at least two forms of communication.. phone and email.. politely..

Thanks for the laugh, DES.

Going to see my doc Friday & see if he's sent in my referral for the pain clinic. I have a copy I've printed off & just so happen to have my info filled out on it already, just in case he hasn't done his end of the work..

I'm also going to see about being taken off Lyrica & perhaps put on something else. I've descended through at least five levels of Hell in the past few weeks, I've had a lot of breakthrough pain, and the side effects are horrible. Doesn't help that my counsellor's cancelled another appointment, something I don't need when I feel this crappy about my PGAD situation & now I feel pretty abandoned by her too..

What is it with professionals these days? Are they the only ones whose time matters?

I do feel for you DES. We have to do so much ourselves to get somewhere, trying all the while to keep our spirits up and endure. OK, not good but with the help from people here it's just about doable. . . . . but then they let us down again and again. The feeling of abandonment is SO awful, and so unnecessary.
I'm not talking about your counsellor (never know what is happening in other peoples lives) it's the whole lot. There is a mountain to climb already and they callously nick your ropes!
I hope the empathic rage I feel is unfounded and you do have progress on Friday. We would all love to bundle into your Doctors tomorrow with you, handbags at the ready (sorry boys, it's mandatory dress code) Don't get too upset if they fall short of expectations. . . . or do!! maybe that's what it will take!. . . . but then there's the danger of falling into the 'mad' category. It's a farce, with no funny bits.
Fingers crossed for Friday.
Helen

Ditto to everything Helen said. Thinking about you today, DES, and wishing you luck.

Violet M

Thanks ladies, it helps to know I've got some virtual support, and a whole battalion of handbags if necessary!

I went to see my doc Friday and basically dissolved into tears about my depression, my anger and frustration, my ongoing pain and stress.. I told him I'm having a lot of breakthrough pain with Lyrica, and first he wanted to increase it, but I told him I'm struggling with my weight (I stress-eat and the Lyrica makes me tapeworm-hungry, so that's not a good combination!), I'm having a lot of confusion and forgetfulness, I'm still stressing from my home invasion and having my last two counselling session cancelled, and I'm in a depression because I've had no progress in getting into the pain clinic to find some answers/solutions for my PGAD..

He asked if I'd heard anything about getting an appointment and that's when I told him my intake package has been sitting with them since January, but they were waiting on his referral.. He said he'd filled one out, but I told him that was just a 'Consent to Treat' form and they were waiting on him.. He seemed annoyed and blamed the 'complicated forms', and that's when I gave him the copy I'd printed out, completed with my information. He asked me a few questions while he filled out some of his parts, then said I'd likely have to wait another six months to get in.. I told him I sure hope not, and hoped they'd consider the time I've already spent waiting.. He said he'd write a note to send with it, explaining the mistake. I told him I've had at least eight pain cycles lasting anywhere from three days to eight days, and I wanted to try to wean off the Lyrica. He said he'd like to try me on Cymbalta as it would help with the pain and also the depression.

I'll start on 30mg/day for a week, then increase to 30gm 2x/day, and go and see him in a couple-three weeks to evaluate. He said to stay on my current dose of Lyrica until I see him and then we'll discuss which route to take.

I'm happy that the form is in the process of being completed, even though I don't know yet if I'll have to wait the six-eight months for an appointment. I'm cautiously optimistic that the new meds will help me get out of the Hell I've been in for several months and get my life back. I also told the doc if he had to live two days with the pain I've had to endure over and over, those forms would have been in MONTHS ago.. He apologized (!!) for the mix-up and hoped my appointment would be soon.. I guess this is a prime example of patience not paying off.. I'm glad I pushed a bit to find out where things stood for me.

I hope they take the fact that the first stage of your application was done in January DES. January!!! Really your doctor who has caused this extra delay, January!!! should try his best to get an early appointment if at all possible. Jan. . . , hmm maybe that will do.
Think the cymbalta will help, I know it does help me. I did read somewhere (forget) that the lower dose is recommended for neuro pain and any increase doesn't necessarily give any greater pain relief, so do monitor the effects carefully.(I know you will anyway ) Any titration should help with low mood however.
At least you have that sorted now, shame you have to play the waiting game again.
Take care,
Helen

I'm new to this site and have suffered from pgad for about 13 years, everyday, 24 hours a day. It does vary with intensity though. I've been to many doctors, been laughed at,etc. I figured my own drug cocktail which does help and ice is my best friend. I've been seeing Dr.Weiss in San Francisco, who believes he can help me. Has anyone seen him and if so, has it been successful? It seems I have very tight muscles and pelvic floor with many trigger points vaginally and externally. It appears that the muscles press on my PN. The goal is to get the pelvic muscles to relax which will eliminate the pressure on the PN. does this sound familiar and realistic? Any info/feedback would be very appreciated.

Welcome, Suzy!

It does sound like a reasonable thing to me that being able to relax the pelvic muscles would help take some stress away from the PN.. I've "only" suffered PGAD constantly for about 13 months, but I can assure you that for the first 7 or 8 months, my pelvic/PC muscles didn't relax at all.. I know that whenever I stirred during sleep, I could sense I was still aroused and would wake up excessively *ahem* wet down there. There was no waking up without arousal, and it often got worse through the day.

You say you've found a drug cocktail that works for you? Would you mind saying what has helped the most? And yes, ice for sure is a good friend to me too.

I go in a few hours to my doctor, so he can evaluate my meds.. The Cymbalta seems to be working pretty well, despite some uncomfortable side effects, so I'm hoping to taper off Lyrica because I just can't afford them both.

Good luck seeing Dr Weiss.. I'm in Canada, so have no knowledge of him or his work.

Hi Suzy, welcome from me too
The PT and hopefully relaxing of the pelvic floor muscles sounds exactly the right thing to do. Again I wouldn't like to comment on the particular person you are seeing (British) but I have heard of him.
Have you have any positive results at all or is it still early days yet?
I'm sure others who do know will give better feed back.
Take care,
Helen