Persistant Genital Arousal Question-deep inside

[LindseyD]

I realize that there is already a 40 pg. topic on persistant genital arousal disorder. I know there are "lots to try" to help and everyone is so different so its try this,and try that. Well, mine isnt easy to.predict how it started, I had bladder issues that fet full on the time after a uti. my symptom of that has never cleared. Its been over 6 months. Next thing u know,weird,tingly,nerve type crawling in my labias. The feeling progresses.to my butt at times,as well as hip and left leg and ankle. In the course of itball, I felt this need for sex suddenly. Out of no where and it lasted a day or so. Monthw went by,and by January of this year,thwt deep,pgad arousal began again,but constant. It is DEEP inside. I hate to be graphic, hope its okay to say,but if u had a reall long finger (I dont,and it wouldnt help anyway) and went as far back in the vagina as u could, and I mean straight back,that is where the arousal is. I saw my dr.at Emory it ATL for the first time last week. He's put me on decepramine,and xanax. He did an intense pelvic exam,pressing areas on my PN. It did.hurt,but its not like that spot is where I hurt all the time. But since I did have pain there, he wants me to have blocks done. He also sent me for a tesla mri which was horrible! All the shaking and vibrations of a 45 min to an hour clostrophobic mri waa awful. I have read through some of the posts on the pgad section about certain meds helping most and such. I guess my question is this, if you found most success with medication,ws your pgad mostly clitoral or was it deep inside like mine? I cant say for sure what cause mine. I had slowly come.off my ssri over the summer and through Christmas. But bc of all of my other pelvic issues,I know it is highly likely that its caused from that as well. At least my new dr.is familiar with PN. So, if you had this deep vaginal feeling, did u ever find meds helpful? Is there a certain medication that is best used or to avoid with nerve blocks? I am also in thr process of finding out for sure if tarlov cysts are in the picture. I refuse to believe there is NOTHING that can numb this for us. I know someone mentioned having medical canibas. It helped PGAD but also made her numb all over. Makes you wonder if that could be adminiatered into your pelvis,etc.... So I guess my question is this. What would u say r the top meds to ask the dr.about trying? Is there a genaric for Lyrica?? Thanks,and sorry this is so long.

[Violet M]

Lindsey, I've already told you some of my history but I will go ahead and post here in case it might help anyone else reading this thread. My PGAD was primarily deep inside toward the back of the vagina, worse on one side than the other. I had severe urinary symptoms including the feeling of needing to go frequently. Pelvis exam revealed tenderness at the ischial spine, the bone that protrudes toward the vagina in the pelvis, although not the type of pain that makes you scream, just tenderness.

Meds that helped these symptoms were imipramine (a TCA), but I couldn't take it due to thyroid issues and side effects, so I switched to an SSRI. First I took zoloft which helped the PGAD and urinary symptoms but caused GI problems so I switched to lexapro which was a lifesaver and had few side effects while still dampening the PGAD/urinary symptoms considerably. I also took clonazepam at night because when lying down I had shocks that caused pelvic floor spasms and this medication dampened the shocks and allowed a few hours of sleep a night.

Lindsey, I know it's hard talking about all of this. I hate reliving it and posting it publicly but I do it because I hope it will help someone else.

With nerve blocks I think one steroid in particular that has a bad reputation is depomedrol. According to and ABC report, Dr. Aldrete who is an expert on arachnoiditis states that "the preservatives in steroids can be toxic to spinal nerves". http://abcnews.go.com/Health/epidural-s ... 260&page=2
http://tinyurl.com/lkugqqb
I don't see any reason to believe why they might not damage peripheral nerves also which is why I think patients shouldn't have more than 3 as recommended by Prof. Robert. http://www.pudendalhope.info/sites/defa ... Robert.pdf
If you are concerned about steroids in nerve blocks you could try a block with just marcaine for diagnostic purposes only.

Violet

[Violet M]

Forgot to mention one other thing. There is another nerve called Frankenhauser's plexus that innervates the cervix and may cause a loss of ability to orgasm if it is severed during hysterectomy surgery. I explored the possibility that a problem with that nerve could be the cause of PGAD in my case but in the end it turned out to be the pudendal nerve. It's another nerve to consider as you go through the diagnostic process. Some docs can give a block at the inferior hypogastric plexus to rule that out. I never had it done but it is just something to keep in the back of your head.

Violet

[LindseyD]

Forgot to mention one other thing. There is another nerve called Frankenhauser's plexus that innervates the cervix and may cause a loss of ability to orgasm if it is severed during hysterectomy surgery. I explored the possibility that a problem with that nerve could be the cause of PGAD in my case but in the end it turned out to be the pudendal nerve. It's another nerve to consider as you go through the diagnostic process. Some docs can give a block at the inferior hypogastric plexus to rule that out. I never had it done but it is just something to keep in the back of your head.

Violet

Thank you for the extra info. yes,I remembered what you had told me of your story before. I describe mine too going all the way back to the cervix. So giving a block at the inferiorhypogastric plexus to rule out if frankenhausers nerve causing it,and if it stops the pgad,is it a clear sign that that nerve is whats causing it? Also, if a pn block is done and it helps this, is that diagmostic.for finding out that that is the cause of it?? If thr nerve block doesnt help the pgad for a little while, does that automatically mean that those nerves are not the cause?

[Violet M]

Good questions, Lindsey. Nerve blocks are not 100% accurate for a diagnosis because the medication can wander a little bit to other areas. Also, it's difficult to precisely target a nerve that is deep in the pelvis. However, if you get a few hours of relief from a nerve block to a particular nerve, that would suggest that the pain/pgad is associated with the nerve that was blocked.

I had partial relief of pain and pgad from pudendal nerve blocks but never 100% relief and it only lasted a few hours. If you get no relief from a nerve block, not even for a few hours, that can mean a couple of different things.

1. It could mean that the medication hit the right target, the pudendal nerve, but if there is no relief of symptoms then it's not the pudendal nerve that's the problem.

2. Or, it could mean that the medication didn't hit the right nerve and didn't come close enough to the nerve to affect it. If that happens, you probably won't have any loss of sensation or numbness in the distribution area of the pudendal nerve. If you do have numbness with loss of sensation in the saddle area (clitoris, perineum, rectal area) or even part of these areas, then the medication likely hit the target of the pudendal nerve. If you also have some relief of symptoms, that is typically considered diagnostic for pudendal neuralgia.

Violet

[LindseyD]

Okay, thanks Violate. Ill give an update after Thursdays appointment. Im super nervous.

[Violet M]

Lindsey, you will most likely be just fine. It wasn't very painful when I had it.

Best,

Violet