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 »

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. :)
On the road of discovery to see what is causing my PGAD.
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Violet M
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Re: New To This Site and Hoping For Help...

Post by Violet M »

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
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.
Lernica
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Joined: Fri Jan 14, 2011 10:31 pm

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

Post by Lernica »

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.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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 »

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.
On the road of discovery to see what is causing my PGAD.
greeneyes
Posts: 45
Joined: Fri Sep 17, 2010 2:43 pm

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

Post by greeneyes »

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
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 »

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! :shock: 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! ;)
On the road of discovery to see what is causing my PGAD.
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Violet M
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Re: New To This Site and Hoping For Help...

Post by Violet M »

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. :D

Violet
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.
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helenlegs 11
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Location: North East England

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

Post by helenlegs 11 »

Good luck DES,
Managing all of this certainly makes you a winner. The same goes for all of us I think ;)
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 »

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.. :D 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! ;)
On the road of discovery to see what is causing my PGAD.
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Violet M
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Re: New To This Site and Hoping For Help...

Post by Violet M »

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

Violet
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.
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