Hello I am new with questions.
 

Hi my name is Jess and I live in charlotte, NC. This summer has been hell.
I started out with a ruptured cyst, which aggravated my GI issues and had an inflamed and spastic colon, but the worst part is a constant burning pain I am having in the vaginal/pelvic area. I have been put on 600mg of Nuerontin by my nuerologist, and I also take Lexapro, only 5 mg.
Can this low dosage help with burning pain? Would I be better off asking to tirate the Nuerontin faster? Initially it was my GI doc that put me on Lexapro to help with IBs and the brain gut connection, so I am wondering if I would be better to go with Elavil for nerve pain. I hate this constant burning, and I can't sit down without pain. I have had to take off work for months as I am a guitar and piano teacher and i have to sit.
I know some patience is needed, but my Nuero wants me to take 600mgs for 4 weeks without titrating, I think I need to be increased a bit faster.
Thoughts?

thank you .

are you describing
 

pelvic pain? Or vaginal pain?

The vaginal pain called vulvodynia is sometimes relieved by eating a low oxalate diet.

The other internal pain is often treated the same way as fibromyalgia, and is considered by doctors to be similar.

Hence the Neurontin and antidepressant.
A visit to the fibro board here may be helpful.

What type of cyst did you have? Was it a pilonidal one?
Those are very painful, sometimes even after removal.

It is vaginal nerve pain, and it is pudendal nueralgia. I have read the vulvodynia and PN are treated with the same meds.. usually an anticonvulsant and antidepressant. Nerves in the pelvic and vaginal area causing burning pain. I don't know what kind of cyst it was but it may have caused some of these problems.
I take Nuerontin, but just started as I needed a nerve blocker. I just wondered if I should ask about Elavil for more nerve blocking and getting rid or lessening of the burning.

here are some links to look at...
 

http://www.med-owl.com/health/Vulvod...ates-Diet.html

http://www.branwen.com/rowan/oxalate.htm

People who have used antibiotics heavily in the past, lose some beneficial bacteria in the bowel that complex oxalate from our diet. When oxalates increase, then kidney stones increase,
and other things happen, it is believed, like vulvodynia.

The medications you are on are typically used for neuropathies, and fibro type symptoms. Some doctors believe that some neuropathies are centrally mediated in the brain...hence the antidepressants. The Neurontin is for peripheral pain issues.
Vulvodynia has been grouped with Fibromyalgia in some
therapeutic handbooks. Whether that is really accurate is not proven yet.

Have you tried any physical therapy.

I imagine that with the prudenal neuralgia that all the surrounding muscles are spasmed in that area. And then nerves spasm they tighten up around the nerve and then crush the nerves even further causing pain and more burning.

Might be worth trying to find a PT that specializes in pelvic floor exercises or pelvic dysfunction to see if they can help get that area quieted down.

Thank you . I will look into the PT, as I am ready to look at anything that can help this constant burning. Thank you again.

I recently started working with a pelvic floor PT specialists for muscle spasms down there and while I do not have the same problem you have I for sure thought my pain and burning was a cyst or something else gyn related or perhaps that bad disc in my back.

But nope the gyn felt all around in there and found the source of my recent pain and was like wow you have muscle spasms deep in your levator ani muscle and the surrounding muscles. So off to PT and I have to say it has helped my pain. not totally gone but a good reduction.

Good luck. Be sure to make sure they know how to treat pelvic floor dysfunction.

Thanks Shelley. I will look at that. This has been a tough summer. The worst from this pain. I am also looking into seeing a Pain Management Specialist to see what they can do.

Wow Shelley,

Great post! :) I think you are the first person besides myself to either have recommended pelvic floor PT or has done it. It worked absolute wonders for me last year. Although, it did take my PM and Urogyn to get it all sorted out due to the nerve damage in my lumbar/sacral area. You are soooo right about the Levator Ani muscle; that was the source of a lot of my spasms. I will say on my very FIRST appointment I was almost in tears that day from just driving over to the rehab place. When I left, what a reduction in pain! :)

Jess, seriously, it is worth a try. I almost didn't go through with it simply because I didn't think it would work or help...but it sure did. And one more thing...once you have gone through this VERY specialized PT they will teach you how to manage it on your own. I don't want to get too graphic but I swear by pelvic floor PT.

Oops, forgot to add something Jess...two things. They can do pudendal nerve blocks if the nerve pain is bad although I haven't had that done and really didn't need to. Also, my Urogyn recommended I get spinal injections FIRST to calm the sacral area down. I did that and it helped too. I know that probably isn't your problem; just wanted you to know they can calm things down before attempting pelvic floor PT. And actually, the PT I had was so easy that I didn't have much pain afterwards just a bit of soreness where she had released some spasms. But I agree with you about the "sit pain". It can be very, very painful.

kathi, i know it is a bit graffic, but what do you think about posting it on womans health?

i'm a personal trainer who has helped many women with these type of issue. kegal exercises just aren't enough, though very important for all woman to do.

i know what i train on is different than a therapist does.

Thanks Kathi,

I am only a week and a half into the pelvic floor but have to say I was surprised.

A month or so back I was up all night with pelvic pain and pain up and down my lower right side and I was in tears. I thought oh no a cyst or perhaps the endometriosis was back.

SO I went to the gyn and explained the pain. He said no way the endo was back but he felt around on the outside and tried to find the pain. He could find it but then when he was internal with the exam he pressedon a spot and I almost jumped off the table and was like yeah thats it what is it a cyst. I swear it even affected me gastro wise.

He was like nope its a very bad muscle spasm in your levator ani muscle and other muscles in the area.

Now I have a small to moderate disc bulge at L5/S1 but the doc said it does not look like there is pain from it so I ruled it out as the source of my pain.

BUt boy was I surprised that it was a muscle problem not a female problem. Although I do think the hormones aggravate the area sometimes.

But yep pelvic floor who would have thunk it.

I agree Curious....
Not all symptoms in this region need major drug therapy.

If the original poster okay's it, I think a copy of this to the
women's forum is a good idea.

Curious,

I think it is a great idea to post it under the Women's Health forum if Jess cares to have it moved over there. :)

Shelley,

I am glad you are having success. :) I will be honest, it took about a year to get this all figured out. And, yep, I have issues with L4, L5, S1 AND two fractured areas in my tailbone that are arthritic. One of the very first things my Urogyn said was that it was possible it was all being caused by nerve damage. I took this information or rather the 3 page report (testing he had done) from my Urogyn to my PM and he was in full agreement. So, it just took off from there. It is and was completely amazing to me how much it helped. Nowdays I can sit without much problem at all; every once in awhile I have a pain in the tailbone but that is to be expected. Oh, forgot to add I also had endometriosis for years...until my hysterectomy 8 years ago. So, I know that feeling too! :eek: And I keep forgetting things LOL. I also had her release the Piriformis muscle since it was causing sciatica type of pain down my left leg.

Okay, I will stop here...just saying it is very much worth a try for anyone having this type of pain.

Hi, thank you for your responses. Besides medication, I am looking into pelvic floor therapy as well. I appreciate the help. Since I am new to the forum, I didnt know where to post, but it would be great to move this to the women's issue thread. :)

Thank you all for your helpful suggestions. Since I was new, I wasnt sure where to post my question, it would be great to move it to women's issue thread. Thank you for your help. :)

That's okay Jess. And, after all, your original post was about the medications. I SOMETIMES think, though not always, that Neurologists are notorious for tossing meds at you. I have a good Neurologist but there were a couple of times she wanted me to take the meds. However, when I showed her my cervical spine MRI she INSTANTLY changed her mind; needed surgery instead. Anyway, long story. :rolleyes:

As for the Neurontin or even Lyrica. I took Neurontin for several years and just never got past the SE's. That's not to say it doesn't work. I am just too sensitive to a lot of meds. A lot of people have success with it and/or Lyrica or even others. Elavil is another med I tried. But anyway, I would try the meds just to get things calmed down and then try the PT if inclined. I really do think it is worth a try. Hang in there and I hope you can get this all addressed.

i left a link in the medication forum, so others will see it there too.

I have had PNE for almost 4 years. I contacted a dr in France who referred e to MN. The clinic is MAPS in Mnneapolis. The dr name is Antolak I think is the spelling. I had my first injection a month ago and had over half a month of pain relief. I had my second one today and am expecting good results. I will have the 3rd on in April. Believe me this has been my answer. Phone number for the clinic is 1=763-537=6000. This is best I have felt in years. MY hubby says I am like a new person. Good luck. Sandi

Good Luck to you ! That is wonderful. I am very familiar with the drs for PNE as I belong to pudendalinfo.com as well,, and was at a point last year I thought I was going to have surgery. I have my PN stemming from my pelvic floor so I have been going to physical therapy and have improved since last year. That relaxation techniques, dilators and yasmin birth control to help with the extreme burning i used to get with the period and PN and there is improvement. Still plugging along, and I also take 2700mg of Neurontin and 35 of Elavil which works for me. I wish you continued health in dealing with the PNE.
jess:)

Hi,
I am new to this chat. I was diagnosed with Vuvodynia October 2007 by Iowa City Vulvodynia clinic. They were no real help.
Recently I joined the NVA and they are wonderful.
I found Dr. Meltzer through them in NorthBrook Il. He found a rare yeast and helped me get rid of it. I now have neuropathic pain. He told me to find a pain clinic with a neuropathic doctor who could give me a pudental nerve block. I have had 3 so far. The first two were not given into the pudental nerve correctly. Yesterday's block got to the vulva area and has lessened the pain a little and I will have another next week.
I use an ice pack on the vulva area a lot which is annoying.
I tried neurotin before and went off of it for my hysterectomy in Feb 2008.
I am going to try amitripilyn starting at 25mg tonight and may retry neurotin later. Hope I am helpful
lbayless

Welcome to NeuroTalk. :hug:

The condition you have sounds just horrid. Nerve pain anywhere is hard to bear, and I for one can vouch for that.

I have nerve pain, and so does my husband. His is in his back and due to multiple protruding discs. He tried Amytriptalline but unfortunately didn't find it helpful. He now takes one of the anti-epileptic medications just as I do, and we've both found them to be reasonable effective for our nerve pains.

I can imagine that ice packs would give you relief, but also understand that large packs would soon become bothersome. As a nurse I can remember cutting the fingers off gloves, filling them with water and freezing them. These made mini ice packs to be used "down there". If worn with a pad underneath, apparently were not that uncomfortable.

Worth giving it a try anyway. :rolleyes:

I do hope you get relief from the Amitryptalline. As Neurontin wasn't successful, I was wondering if you ever tried Lyrica?