Re: --LP and Nerve Block update

[Guest guest]

Thanks for your advice about Dr. everyone. I did talk with Dr. Conway today and he said it wasn't a problem at all for him to write me my letter. So, hopefully they'll get me an appointment within the next month or two. Also, just to keep everyone posted about my nerve blocks- the pudendal blocks did not work for me (at all really except for the day that they were done), which is a signal to me that maybe I don't have pudendal neuralgia, which is why I really want to see Dr. . However, we are continuing to treat it as nerve pain until or if something else is found or thought of, so yesterday I got a ganglion impar nerve block, which is a bundle of nerves down near the very base of your spine, close to your tail bone. Dr. Quesada thinks it might help with the hypersensitivitiy that I've been experiencing more and more of, as he thinks it might help increase blood flow to the nerves and also help with

healing. Dr. Conway doesn't think it will help, but if it doesn't, there are 2 other nerve blocks we can try (dorsal clitoral nerve and hypogastric plexus), along with changing my medications. Lately i've been able to pinpoint my problem, where the pain and hypersensitivity is coming from and it's not right on the tip of the clitoris, but right behind that in the area between the tip and where the clitoris extends into your body behind the pubic bone. When i touch that part it is extremely sensitive. Not really sure what that means, but it might help Dr. to know that's exactly where (if I get an appointment).

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[Guest guest]

, I was just thinking of you earlier today and wondering how your block went. How many of these new blocks will you have and where did you end up being numb? I'm assuming this new one didn't effect your ability to walk, did it? This last round of PN blocks I could stand okay but when I walked I held onto and looked like a one year old taking my first steps the way it numbed me. Keep us updated and I hope they help. What do we have to lose for trying? I say try whatever you have available...you just never know what might be the one thing to work! Best wishes... Hugs, Chelle

[Guest guest]

,

When I was getting the blocks for 3 years from my Pain

Management doctor she tried to block the pudenal nerve twice and

it did nothing for me. I reminded her of that today when we

talked to see about which are the next steps to take (going to

have another MRI done of the lumbar area to see what's going on

there now) and she told me what I already knew. That my problem

is not the pudenal nerve branch although when she touched the

sacral areas (which is where the pudenal nerve branch branches

off of). Because I got more relief from when we went higher up

which is around the genitofemoral and ilioinguinal nerves. I

found out about another one that may tie in to one of the

options for block you mentioned. You mentioned the hypogastric

nerve blocks and I was shown a nerve (and will have to check my

anatomy book for) called the iliohypogastric nerve.

Very interesting indeed. How are your legs doing since this

block you got now?

Kristy

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[Guest guest]

,

Did Dr Conway mention anything about statistics on effectiveness of the nerve blocks? My neurologist said not to consider them, it seeems that the people that I talked to that have had them done, seem worse or the same- I was just curious if he mentioned success rates?

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[Guest guest]

Hi Kristy, Yeah, the pudendal nerve blocks didn't help me at all so we are looking into other nerve blocks to try. I am even wondering if maybe by chance there is something very localized causing pain (for example, my PT said she had a girl once with clitoral pain and a few doctors looked at her and didn't see anything and then she went to see Dr. and she found a very tiny cyst under her hood, removed it and her pain eventually went away). But, I am interested in the other nerves you were talking about. You mentioned that you had to look at your anatomy book again- anything new? My legs are fine- these blocks (ganglion impar) didn't make anything numb- they were supposed to help more with reducing sensitivity and increasing blood flow to the area to help the nerves heal. I don't really think it's going to do anything though.

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[Guest guest]

no, i don't know any rates, but he did say that they help a lot of people and i know personally of one girl whose clitoral pain has greatly decreased from the blocks. i am about the same, but i seem to have an even stranger case than most people. i think that sometimes people think they have pn or pne but it's really something else, which might be why the blocks don't help- for example, pfd in which pt might help, or a skin disorder or whatnot. also, if the pudendal nerve is not your main problem the blocks won't work, or if you don't get it in exactly the right spot they don't work as well. you should really get a pn block with x-ray guiding to help ensure that it's in the right spot. i'm not sure what your neurologist is a specialist in, but pn and pne is very specialized and while i don't know your doctor, i am thinking that maybe he doesn't know as much about it as the few specialists in the country....? keep in mind though that people who do get better and have things work, tend to stop going to doctors and stop posting on groups and whatnot and move on with their life, so we are less likely to hear the good stories (regarding any vulvar condition) which stinks, so i think we all really appreciate the people who get better and stick around.

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[Guest guest]

,

I haven't had a chance to go look at my anatomy book yet because

now I need to look up one I hadn't heard of before: the

iliohypogastric nerve.

I'm going to be having an MRI done again of my lumbar spine on

Tues but in the seated position to see if anything shows up that

way. I will let you know what I come up with.

Kristy

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