My Story-Does it Ring Bells?

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kia kaha
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Joined: Tue Aug 23, 2011 1:32 am
Location: Dunedin, New Zealand
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Re: My Story-Does it Ring Bells?

Post by kia kaha »

I just replied to your reply to my PN and IC question thread.

Good to read more here as well as your story Larry 195555
Chronic Pain pudendal area for 3 years, after a hard jolt to right side.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
Bobby
Posts: 64
Joined: Wed Nov 02, 2011 3:53 pm

Re: My Story-Does it Ring Bells?

Post by Bobby »

Bathsheba wrote:He also prescribed 50 mg. noritryptiline, as well as physical therapy to loosen up the right side of my pelvic myofascia, which is tight and painful, probably pressing on the pudendal nerve.
I personally would recommend you stick to that physical therapy to release the tight and hard tissue and muscles in the pelvic region. Been doing physical therapy for 3 weeks now to loosen up the pelvic muscles and tissue and am seeing results.

Good Luck!
http://www.pudendalhope.info/forum/viewtopic.php?f=35&t=4792&p=35398#p35398
Read this post, it will likely explain everything.
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Bathsheba
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Joined: Sat Oct 15, 2011 6:18 pm
Location: Northern, VA

Re: My Story-Does it Ring Bells?

Post by Bathsheba »

Update:

Unfortunately, the PT didn't help. The PT said after 3 months that she couldn't help me. To quote her, "The muscles in your pelvis will not relax until the nerve settles down. There is nothing I can do to help you as there is nothing wrong with your musculature other than the muscles reacting to a damaged nerve." She gave me a TENS (?) unit to try which caused horrible pain. When I told her this, she said that this reaction was proof of a severely damaged pudendal nerve.

The CT guided nerve blocks stopped after 2. The second one was a total failure with my whole crotch dead and loss of continence for an hour. Now I am worse than ever unfortunately, having to increase my Lyrica and use ice packs almost constantly. I don't know what could be causing this other than the last injection as I am not DOING anything other than short trips to grocery store etc. on a cushion. Otherwise, I am flat on my back.

Dr. Marvel was an expensive waste of time and money ($600 for a 15 minute exam, plus his sidekick Dr. Richard charging $1,000 per shot...). Now I am worse, not better. What next, I don't know as no neurologist seems to be interested or knowledgeable about this condition. Dr. Dellon is nearby but he seems like a self promoting quack, claiming cures which are not substantiated and charging unconscionable amounts for his services. It's good to make people aware of this condition, but Dellon is just too much....
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
Lernica
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Joined: Fri Jan 14, 2011 10:31 pm

Re: My Story-Does it Ring Bells?

Post by Lernica »

Bathsheba,

I don't know where you live, but if you're close to the Canadian border you could consider taking a trip to Cornwall, Ontario, where Dr. Kirk Andrew has been having a lot of success treating various pelvic neuropathies with extracorporeal shockwave therapy (ESWT). A number of forum members have taken the trip or are scheduled to to do (besides me, there's Surfsup, PNMom, PelvisStressly and Mystoryhurts) with mostly successful results. If you want to read more about it, just type "Cornwall" or "Dr Andrew" in the search box above, or contact any one of us.

I'm sorry to hear that PT was not helpful for you, but that seems to often be the case with true nerve entrapment. Best of luck in trying to find a solution to ending your pelvic pain.
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
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: My Story-Does it Ring Bells?

Post by helenlegs 11 »

Good luck with whatever you decide to do Bathsheba. You obviously need some intervention sooner rather than later. Lernica's suggestion is something I am personally interested in, although it is totally impractical for me at the moment. Unfortunately it is a costly venture, but a good step before ever considering more invasive surgery. Dr Marvel was very wrong to even suggest that his blocks were to be the ultimate answer to your problem.
I hope things start to take a turn for the better for you.
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.
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Violet M
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Re: My Story-Does it Ring Bells?

Post by Violet M »

Hi Bathsheba,

At least your PT was smart enough to realize PT wasn't helping. I had the same problem -- the nerves were what was causing the muscles to go into spasm.

I'm sorry the nerve blocks haven't worked out so well for you. I'm not a huge fan of nerve blocks as I have heard of too many people having problems afterward but unfortunately for anyone considering surgery most of the surgeons require them before surgery. Deciding whether to go for surgery is an agonizing decision though. Do you have health insurance that will cover any of the costs you have incurred so far and if so, might they pay for you to visit an out of network provider?

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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