PGAD - persistent genital arousal disorder

[carolynm]

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

[helenlegs 11]

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.

[Violet M]

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

[Krisssy]

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

[Violet M]

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?

[Krisssy]

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

[Lernica]

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

[Krisssy]

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

The injections are not guided. Krisssy

[Krisssy]

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

[Violet M]

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.