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.
Dizzyblonde
Posts: 32
Joined: Wed Nov 14, 2012 10:51 pm

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

Post by Dizzyblonde »

Hi Violet, thanks so much for your comments, I have already gained much from this site. At Janet's suggestion regarding medication I rang Prof Vancaille this afternoon and he's going to add Lortab patches to my regime. I'm intolerant to most meds, even anti-nausea which he has also recommended initially so will see how I go. The pain is out of control presently so hope for a positive outcome. Thank you for your advice regarding topical agents which is now on my 'to do' list. Control of my pain is my priority, the road to recovery is much longer and harder than I ever imagined so I will be drawing on the knowledge acquired by members of this forum whilst on their journey too.
Cheers, Judy
Bladder prolapse surgery 1992; hysterectomy & 2nd prolapse surgery next 6 years. PN started 1992 but managed well. Flare in March 2012 ignored signs from prolonged sitting & exacerbated by UTI. PT so far unsuccessful. Two bilateral blocks only right side positive for short time MRI showed PNE left side. Results conflicting so proposed nerve stimulater implant with bilateral PN release to cover all scenarios. Might go ahead approx Feb 2013 Housebound..300mg Lyrica x 2 daily &5mg Endep
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

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

Post by janetm2 »

Judy,
So glad to help. It sounds like a few ideas you can try and hopefully cut the pain and refresh you for the journey! Best to you, keep us posted and feel free to ask anything although we all seem to have different paths usually someone has a close enough experience to pass along their advice.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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 »

Going for my EMG this afternoon. Gosh, I'm sure hoping it doesn't hurt that much. Had my doc appmt yesterday and found out I'm pre-diabetic now. This really sucks.. :(
On the road of discovery to see what is causing my PGAD.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: New To This Site and Hoping For Help...

Post by Violet M »

How'd it go, DES? Hope you got through it OK.

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.
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 »

Sorry, I've been off the grid these past few weeks, dealing with a lot of personal issues. Turns out I'm not pre-diabetic, but diabetic. I've had a headache for 3 1/2 weeks straight, so when I went to the walk-in doctor last week, she said I needed to start diabetic meds right away, and hopefully they would help my headache disappear once I got my sugar levels under control..

I actually don't know if I had an EMG or a PNMLT. Dr Gordon had the electrode thingie over a finger and it was a mostly-internal exam. Apparently my reaction times were normal..

I was really happy that my hubby was allowed into the room with me. He just stood out of the way against the wall near me, but it helped my anxiety level greatly to have him there. It was quite uncomfortable for me, although not as horrible as my imagination led me to believe. He also did an external palpating test, and as a result of both of these, I was in some pain for a few days afterwards.

My MRI is scheduled for Friday evening. Of course my hubby will come with me, since it's downtown at a different hospital and it'll be dark..

I'll let you know how that goes. Dr Gordon will be looking for Tarlov cycts and also perineal cysts.
On the road of discovery to see what is causing my PGAD.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

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

Post by janetm2 »

DES,
so glad you made it okay and sorry to hear you have diabetes to deal with. Hang in there and my hubby is also a great support and driver, makes a world of difference.
Janet hope the MRI goes well and gives you data to work out a treatment plan.
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
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Re: New To This Site and Hoping For Help...

Post by Violet M »

Good for you, DES -- glad you came through the testing OK. You sure have had a lot to deal with lately but it's great that your husband is being so supportive. Good luck with your MRI. ;)

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.
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 »

Thanks so much ladies. It's not been an easy journey for me lately and I'm so grateful to my hubby for being so supportive to me. Yesterday while I was at counselling he took my MRI cds to Dr Gordon and the radiologist at the other hospital where I'll have my MRI done on Friday. I then went to work in the evening, and didn't see him until I got home from work at 11:30PM.. :(

If he only knew how much I lean on him and appreciate his support.. I'm so lucky!

I haven't been able to get a straight answer from anyone on whether I have to stop my Metformin before the MRI.. It's got me worried, as the interactions with the contrast dye can be very dangerous to the kidneys.. :?
On the road of discovery to see what is causing my PGAD.
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Violet M
Posts: 6739
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: New To This Site and Hoping For Help...

Post by Violet M »

DES, what is the trade-off? Can you keep your blood sugar and a safe level without it?

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.
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, apparently since gadolinium is not an iodine-based contrast dye, it's safe for people taking Metformin to continue taking it if they're having an MRI. At least that's what my radiology tech told me. I stopped it the night before and for two days afterwards, just to be safe, since I'd read on-line that it may be potentially dangerous. I don't need kidney problems on top of PGAD and diabetes!

I actually watched what I was eating and when, and was super-careful not to overdo anything I'm allowed to eat, and I felt fine (except for that headache)..

I'm still in the process of balancing my sugar, and I've started testing it myself with the meter.. I'm a huge chicken when it comes to needles, so I'm on a learning curve still..

I go in a few hours to get my MRI results consultation with Dr Gordon.. I'm suspecting they won't find anything of consequence this time around, then I'll be left wondering what on earth is causing my PGAD.. :?
On the road of discovery to see what is causing my PGAD.
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