PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Re: PGAD - persistent genital arousal disorder

Postby carolynm » Tue Sep 27, 2011 7:30 pm

Calluna,

The frustrating part is that most doctors have never even heard of it! I'll have to ask Dr. Hibner if he has any ideas.

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Re: PGAD - persistent genital arousal disorder

Postby helenlegs 11 » Tue Sep 27, 2011 7:41 pm

Krisssy wrote:After 4 months of nerve blocks every other week and physical therapy with Amy Stein in NYC, I am finally starting to feel better. It is a very slow process, but please don't give up. My relief started by consulting with a pelvic pain specialist in Pa. The pudental nerve is the cause of all the symptoms. Krisssy


That's commitment Krisssy! Glad to hear that it's working, hope it continues.
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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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sat Oct 01, 2011 6:53 pm

Krisssy wrote:After 4 months of nerve blocks every other week and physical therapy with Amy Stein in NYC, I am finally starting to feel better.


Krissy, I'm glad to hear you are feeling better and I hope that you will continue to see improvements! ;)

I've not heard of anyone getting nerve blocks that frequently although I have heard of women getting trigger point injections into pelvic floor muscles on a regular basis in conjunction with PT. Do you know whether your nerve blocks contained steroids? The reason I ask is that my understanding is that repeated steroid nerve blocks can damage the nerve which is why most of the PN docs stop at 3 blocks. Also, some of the PT's feel that repeated nerve blocks can cause scar tissue to form around the nerve. I know of people who have gotten worse from nerve blocks, including developing PGAD as a result of nerve blocks. I would be interested to hear more information on the treatment protocol you are following.

Take care,

Violet M
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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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Sat Oct 01, 2011 7:48 pm

Violet M wrote:
Krisssy wrote:After 4 months of nerve blocks every other week and physical therapy with Amy Stein in NYC, I am finally starting to feel better.


Krissy, I'm glad to hear you are feeling better and I hope that you will continue to see improvements! ;)

I've not heard of anyone getting nerve blocks that frequently although I have heard of women getting trigger point injections into pelvic floor muscles on a regular basis in conjunction with PT. Do you know whether your nerve blocks contained steroids? The reason I ask is that my understanding is that repeated steroid nerve blocks can damage the nerve which is why most of the PN docs stop at 3 blocks. Also, some of the PT's feel that repeated nerve blocks can cause scar tissue to form around the nerve. I know of people who have gotten worse from nerve blocks, including developing PGAD as a result of nerve blocks. I would be interested to hear more information on the treatment protocol you are following.

Take care,

Violet M


The nerve blocks definetely do NOT contain steroids. When I go for my appointment this week, I will ask him what is in the blocks, and I will let you know. This is the first relief I have had in 3 years. I already have scar tiessue, and that is what is causing the pain on the nerve. He told me that if I lived in Pa. he would be doing it weekly. Will get back to you on Wed. with what is in it.
Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sat Oct 01, 2011 8:07 pm

Thanks Krissy. Anymore information you can provide would be helpful -- like where along the nerve does he give them -- at the ischial spine or alcock's canal? Does he do them internally via the vagina or does he do them through the buttocks?
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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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Sat Oct 01, 2011 10:33 pm

Violet M wrote:Thanks Krissy. Anymore information you can provide would be helpful -- like where along the nerve does he give them -- at the ischial spine or alcock's canal? Does he do them internally via the vagina or does he do them through the buttocks?


He does it on my left side only through the buttocks. Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
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Re: PGAD - persistent genital arousal disorder

Postby Lernica » Sun Oct 02, 2011 12:30 am

Are the injections guided with e-ray or ultrasound or CT?
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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Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Sun Oct 02, 2011 1:14 am

Lernica wrote:Are the injections guided with e-ray or ultrasound or CT?


The injections are not guided. Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
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Location: New York

Re: PGAD - persistent genital arousal disorder

Postby Krisssy » Fri Oct 07, 2011 4:39 pm

Krisssy wrote:
Violet M wrote:Thanks Krissy. Anymore information you can provide would be helpful -- like where along the nerve does he give them -- at the ischial spine or alcock's canal? Does he do them internally via the vagina or does he do them through the buttocks?


He does it on my left side only through the buttocks. Krisssy


Hi Violet,
I asked Dr. Echenberg. He gives me a combination of Marcaine which is like Lidocaine and a natural herb which helps pain. He injects it throuch the left side of my buttocks (where my problem is ) through the Ischial spine. I am so much better that I am going every three weeks two more times, and then I am through. Remember that I have been going to Amy Stein in NYC weekly for pelvic physical therapy also. You have to be very careful in going to the right physical therapist. The two that I went to before her made it worse. If there is anything else I can do to help you please let me know. I also limit the amt. of time that I sit. Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
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Location: New York

Re: PGAD - persistent genital arousal disorder

Postby Violet M » Sat Oct 08, 2011 3:50 am

Thanks Krissy. Yes I agree that the correct PT is really important and am glad you are able to see Amy -- she has an excellent reputation. Would love to know the name of the herb Dr. Echenberg uses.
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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