Do my symptoms sound like PGAD?

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Violet M
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Re: Do my symptoms sound like PGAD?

Post by Violet M »

I didn't have vulvodynia.

Believe me, I cried a lot too so I understand. The first thing is to see if you can get the symptoms under control a bit so you can think clearly. There are a lot of suggestions in that article I wrote so hopefully you can find a doctor who is willing to help you out, especially in finding medications that help with the symptoms while you figure out a permanent solution. History, age, pelvic exam, and symptoms are all important in figuring out the diagnosis and best treatment options. I did not look at the medications as being a permanent solution and when I went off of them I weaned off slowly. However, if my PGAD had not gotten better from surgery, I would have considered taking an SSRI permanently to dampen the symptoms.

If you can find a PT in your area who specializes in pelvic pain and pudendal neuralgia it would be a good idea to get a pelvic floor examination to determine if your pelvic floor is overly tense, if you have any musculoskeletal anomalies contributing to the problem, and whether you have pain along the course of the pudendal nerve when they press on it via the vagina.

It's too soon to know if you need surgery but if you are able to travel, it wouldn't be a bad idea to see one of the PN specialists. There are some who provide more conservative treatments than surgery.

You have lots of options so keep your courage up and do a lot of research until you figure out what you think is the root cause of your problem and then deal with that.

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.
Hopeitworks
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Joined: Tue Sep 05, 2017 2:12 am

Re: Do my symptoms sound like PGAD?

Post by Hopeitworks »

Voilit,
Because I have vulvodynia I've been to PT, tries antidepressants, and Gabapentin. None of it worked for Vulvodynia, but surgery. However I wasn't having PGAD at the time when I was trying all those things. I'm will to travel if I have to have surgery. I'm seeing Dr. Marvel on the 21 so maybe I'll get some answers. I'm probably going to quit my job in 4 months. I can handle the pain in my legs, but not the arousal symptoms. I feel like my life is over. I can't and won't make it another 10 yrs for relief, like I did for vulvodynia.
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Violet M
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Re: Do my symptoms sound like PGAD?

Post by Violet M »

Lots of women with pudendal neuralgia do have vulvodynia. In my mind vulvodynia is sort of a useless diagnosis because it literally means vulvar pain. I think you probably already knew you had vulvar pain before any doctor ever told you, right? And it doesn't tell you anything about the source of what's causing the pain. Since the pudendal nerve innervates the vulvar area including the lower 1/3 of the vagina, you have to consider the possibility of an irritated pudendal nerve being the cause.
https://www.glowm.com/section_view/head ... m/item/445

But if it's the pudendal nerve, then you have to figure out what's causing the pudendal nerve to be irritated. Is it just tight pelvic floor muscles, ligaments pinching the nerve, scar tissue from a previous surgery, endometrosis, injury from childbirth, an autoimmune illness, etc.?

Well, I completely understand because I thought my life was over too. But I have a great life now and I know other women who have come through this too and are living life successfully.

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.
Hopeitworks
Posts: 148
Joined: Tue Sep 05, 2017 2:12 am

Re: Do my symptoms sound like PGAD?

Post by Hopeitworks »

Violet M wrote:Lots of women with pudendal neuralgia do have vulvodynia. In my mind vulvodynia is sort of a useless diagnosis because it literally means vulvar pain. I think you probably already knew you had vulvar pain before any doctor ever told you, right? And it doesn't tell you anything about the source of what's causing the pain. Since the pudendal nerve innervates the vulvar area including the lower 1/3 of the vagina, you have to consider the possibility of an irritated pudendal nerve being the cause.
https://www.glowm.com/section_view/head ... m/item/445

But if it's the pudendal nerve, then you have to figure out what's causing the pudendal nerve to be irritated. Is it just tight pelvic floor muscles, ligaments pinching the nerve, scar tissue from a previous surgery, endometrosis, injury from childbirth, an autoimmune illness, etc.?

Well, I completely understand because I thought my life was over too. But I have a great life now and I know other women who have come through this too and are living life successfully.

Violet
Thanks for your reply. I'm laughing about what you said about Vulvodynia. Your absolutely right. However since I had my vesribulctomy my vulvodynia is gone.

The more research I do i believe I do have Pudendal Nerve entrapment with sensory neuropathy. The front and sides of my thighs feel like I have really bad sunburn. I also get sharp pain in my hips and groin. I'm trying to accept PGAD but at least I'll know why I have it. Then maybe I can be cured like you from pgad.

I think sitting for long periods of time caused PN if that's what I have. I sit almost 12 hrs a day. I have already had Pelvic Floor therapy for Vulvodynia and it didn't work.

Does the dorsal nerve come into play here with PGAD?

Pray I'll get better and that Dr. Marvel helps.
Thanks
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Violet M
Posts: 6570
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Do my symptoms sound like PGAD?

Post by Violet M »

Yes, the dorsal nerve could be a problem, particularly if your symptoms are just clitoral. You can try a dorsal nerve block to see if it's that branch of the PN that is affected.

If you have hip pain you may want to have acetabular labral impingement and labral tear ruled out as well. Another nerve to consider is the genitofemoral nerve which is pretty easily targeted with a nerve block. I think it is a sensory nerve without the motor component so more easily treated than the pudendal nerve.

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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