New To This Site and Hoping For Help...

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

Stopping by to say hi & I hope everyone's managing okay with pain, tests, emotions, whatever..

I've been MIA for a long time. From early February til now I've been working away at three jobs, and now I'm back to having only two.. I almost feel lazy.. not! :D

I'm still waiting to hear from the Wasser Clinic, but if I don't get any action by lunchtime, I'm making another call to see what's up. A girl can wait only so long.. I'm anxious to get some input and perhaps a course of action/treatment plan to take. It's almost a year, & that's an awful long time to be.. aroused.. :(

I'm hoping to find some more time to do more research here because while my doc says he's willing to help me, it seems that unless I do the legwork and drop the info into his lap, he forgets about me having this horrible condition, and since I'm his first patient, I don't think he knows where to go with this next unless I give him a gentle nudge in a particular direction.. I'd like to see what he thinks of alternatives to Lyrica, because while it helps with most of my pain, the side effects are numerous for me, and if I thought the confusion was bad, the weight gain is worse.. I don't want to be tubby anymore.

Wishing you all some relief from your pain.. :)
On the road of discovery to see what is causing my PGAD.
User avatar
Violet M
Posts: 6739
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: New To This Site and Hoping For Help...

Post by Violet M »

No kidding....that's a long time to wait. Were you able to get through to the clinic?
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New To This Site and Hoping For Help...

Post by helenlegs 11 »

I remember Calluna saying that tramadol worked best for her with PGAD, think it may have been the slow release kind?
Hope you get some good medical treatment soon Des at least you may have some time to go to appointments from now :)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

Violet M wrote:No kidding....that's a long time to wait. Were you able to get through to the clinic?
I'd called the Wasser Clinic last week & just got an automated voice message saying to contact my own doctor about the referral, since they deal directly with the docs, not the patients..

I'd called the specialist desk once and they didn't get back to me, so I called the next day, explained that I know of two people who'd applied at the same time as me or later, and they'd both gotten appointments. The woman on the desk said she was new and would contact the clinic herself to see what's up, & would call me back.

She did call back & left a message saying she had contacted them & was waiting to hear back. It's a small step, but it's pretty discouraging to think that I've likely fallen thru the cracks and maybe I have to apply (and wait) all over again.. :(
On the road of discovery to see what is causing my PGAD.
User avatar
Violet M
Posts: 6739
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: New To This Site and Hoping For Help...

Post by Violet M »

I hope you won't have to start from square one, DES. That would be pretty discouraging but hopefully they will find your paperwork and get you in soon. ;)
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

I kept a photocopy of my patient info, so if worse comes to worse I'll phoyocopy that & take it down to the clinic myself.. I'm trying to be a good girl & wait until at least the end of the week before I do that.

Today the specialist receptionist called me back wondering why my file was on her desk, & I just said I'm waiting to get an appointment at the clinic.. I didn't let on that we'd already discussed this just last week, & she said she'd call them & get back to me.. If she's done this already, this would make the 2nd time, so I'll let her be my PITA-by-proxy! :lol:
On the road of discovery to see what is causing my PGAD.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

I emailed the clinic last week hoping to find out if they at least got my intake form or if I'd have to start over again. The website said inquiries would be answered within three business days..

Today I got a call (!!) from the clinic saying they'd received my intake form back in January, but hadn't received my doctor's referral form.. I quickly searched my important papers in case I forgot to mail it, but it was nowhere to be found..

I called to the specialist appointment coordinator, explained it to her, and she said she could get a general referral form signed by my doc (he's going on holidays after today) and fax it to them.. They want one of THEIR referral forms, which my doc is reluctant to do (???)..

While they play games and kick sand at each other, I very pointedly had to let the receptionist know that I've been in PAIN and in limbo for several months and through no fault of my own wasn't getting any (insert expletive here) help..

I provided her with the name, fax and phone number of the woman I had spoken to, so the ball is now in their court. I do expect to hear shortly of any developments, and if not.. well, we just won't go there right now.. :evil:
On the road of discovery to see what is causing my PGAD.
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New To This Site and Hoping For Help...

Post by helenlegs 11 »

Getting your dander up sometimes gets things done. Hope so anyway. What on earth is wrong with your Dr and his reluctance!!!!!! You shouldn't even have to do this running around. Sounds far too much like my lot over here. Maybe his going on holiday will be fortuitous, another may not be such a stickler.
Let us know what happens.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: New To This Site and Hoping For Help...

Post by DoubleEdgedSword »

Part of the referral process includes the referring doc's agreement to be an active part of the on-going treatment process, so I don't think I can just have any doc refer me without including him, or excluding my doc (read: "firing him").

I've decided to give the whole 'patience' thing another go, but to set my parameters too. If it takes more than two weeks to find out about anything, I'll be leaving a phone message followed by an email. I think that's reasonable, given that I've been overly patient and trusting that everyone has had my best interests at heart, instead of what I've met up with so far.. :(

It sure has been hard waiting this long, all for no results yet. I know if I become a PITA I either won't get an appointment, or I may have to start that 'several-months' waiting period over again. If I'm polite but firm, perhaps they'll take into account my elapsed waiting time and expedite an appointment for me.. *sigh*

I'll update here as I find things out. In the meantime, I'll be over here in the corner, polishing the tarnish off my halo.. Or is that rust?? :lol:
On the road of discovery to see what is causing my PGAD.
User avatar
Violet M
Posts: 6739
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: New To This Site and Hoping For Help...

Post by Violet M »

I don't know...I would probably call sooner than 2 weeks -- just to "check on the status" of the referral. They probably won't even remember the expletive at this point, right? So I think just a little readjustment to the halo and you will be fine. 8-)
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Post Reply

Return to “WELCOME CENTER”