Pudendal neuralgia and other neuropathies

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manon13

Pudendal neuralgia and other neuropathies

Post by manon13 »

Hello,
I have developed pudendal neuralgia 8 months ago. I also have pins and needles all over my body. Doctors so far say it cannot be medication (lyrica and amitryptiline) but more likely a form of central nervous system sensitization. Has anyone experienced somthing similar?
Last edited by manon13 on Tue Aug 11, 2015 3:26 pm, edited 1 time in total.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Pudendal neuralgia and other neuropathies

Post by nyt »

Yes, but mine has not spread as much as your's. Mine has stayed from the waist down. I have TMJ but that is from clenching from the pain in my legs.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Pudendal neuralgia and other neuropathies

Post by calluna »

I am getting trigeminal neuralgia on and off. It is a right nuisance.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Pudendal neuralgia and other neuropathies

Post by nyt »

You might want to talk with a pharmacist about the possiblity of the Elavil causing some of you symptoms. If you do a Google search on the side effects of Elavil you will see it can cause additional peripheral neuropathies. I can't take Elavil because it gives me a rapid heart rate. It wouldn't hurt investigating the possibility that the drugs are causing some of the new problems. They may not be but it never hurts to do your own research.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Karyn
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Location: Lowell, MA

Re: Pudendal neuralgia and other neuropathies

Post by Karyn »

nyt wrote:It wouldn't hurt investigating the possibility that the drugs are causing some of the new problems. They may not be but it never hurts to do your own research.
I think this is a VERY important statement. Anyone and everyone on meds should be thoroughly reading their fact sheets when picking them up from the pharmacy. I recently had a conversation with a close friend who discovered that some of her meds were cancelling out the effects of other meds. I've noticed that some docs tend to down play the side effects. Please take it upon yourself to be viligeant about this!
Warmest of regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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A's Mommy
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Location: Pennsylvania
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Re: Pudendal neuralgia and other neuropathies

Post by A's Mommy »

nyt wrote:You might want to talk with a pharmacist about the possiblity of the Elavil causing some of you symptoms. If you do a Google search on the side effects of Elavil you will see it can cause additional peripheral neuropathies. I can't take Elavil because it gives me a rapid heart rate. It wouldn't hurt investigating the possibility that the drugs are causing some of the new problems. They may not be but it never hurts to do your own research.
Wow... I NEVER thought about this with Elavil. I wonder if it has been doing more harm than good?

Hmmmmm......
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Pudendal neuralgia and other neuropathies

Post by nyt »

If you decide you want to stop taking the Elavil you need to wean off of this drug, don't just stop taking it. Remember there are lots of other drugs out there you can try if you think either one of these might be causing some new symptoms. Elavil is an oldie but goodie that probably has the most research completed on its mechanisms and side effects. If you talk with the dr. again bring information from the pharmacist to back up your concerns. Good luck.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: Pudendal neuralgia and other neuropathies

Post by pomegranate »

I had to stop taking amitryptiline due to weird nervous system side effects--my hands would tingle, legs would go numb easily, and I also had an uncomfortably increased heart rate.

I'm not saying that's your problem, but it is important to look at all the variables.

Lauren
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
JRS
Posts: 26
Joined: Tue Feb 22, 2011 10:54 pm
Location: Ohio

Re: Pudendal neuralgia and other neuropathies

Post by JRS »

I have experienced this as well. I was informed of complex regional pain syndrome and my pain management doctor is hoping once he gets my guided CT pudendal nerve block in some of it may calm down. Has anyone else been experienced CRPS? My PN started 6/2010 from a specific incident. I have navigated in and out of specialists in the last 9 months -- GYN, GI, Colon/Rectal, Uro-Gyn, Derm, Rheum, Inf Disease, Internists, Vascular, Physical Rehab. It has been very frustrating to deal with pain that cannot be seen on MRIs. Lots of doctors checking out their areas with much concern but just so little seems to be known on this subject. It is aweful to have medications prescribed that make you loose your memory but you still feel the pain. I am going to try Savella. Has anyone had success or know of this drug?
Symptoms started 7/2010 following Cellulitis infection
Hysterectomy 11/08 due to fibroids/4 child births
Rt Leg Obturator & Piriformis Pain
Sacral Pain
Current Medications: Lidocaine 5% Patch, Baclofen,Tramadol, Xanax
Topical Amitriptyline/Gabapentin Compound as I am not tolerating systemic treatment
Under Pain Management Care, Seeing a PN therapist (8 visits to date)
PN Block via CT Guide (3/11)
(2) ESI Trigger Point Injections (4/22/11)
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Celeste
Posts: 574
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Location: central Ohio

Re: Pudendal neuralgia and other neuropathies

Post by Celeste »

JRS wrote: I am going to try Savella. Has anyone had success or know of this drug?
I think it's a supplement, rather than a prescription drug. You can use the Search function here to find others' experiences with it.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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