Health Organization for Pudendal Education

I got it at Walmart in the pharmacy section by the Epsom salts. It is also available on Amazon. The bottle is white with a navy blue cap and costs about $5-$6. Look under Morton Epsom lotion on Amazon. The back of the bottle says, ". . . lotion delivers the benefits of an Epsom salt soak without the tub".

Thanks for passing along this info. I cannot always get in the tub so this sounds like a great answer!
Janet

sg300 wrote:, but I was wondering, are there people out there who are undertaking research in this? It would be good to see exactly what research is being done.

SG, there have been some publications in the last few years on a possible relationship between tarlov cysts and PGAD and also between restless leg syndrome and PGAD, so it seems that there is possibly a neurological component, including possible impingement at the spinal level.

http://www.ncbi.nlm.nih.gov/pubmed/19138358
http://www.ncbi.nlm.nih.gov/pubmed/22594432

Violet

Thanks for those links Violet. I have always had burning sensations in my legs since my spinal injury , but I wonder if there is infact a link between this burning and the sensations in my pelvis. I have also noticed in the past couple of days the symptoms have got a little worse also, which is corroborated in Jeannie Allen's website..

I also wonder if it is worth looking into neurotransmitter imbalance, serotonin etc. to see if that can affect these symptoms, since it seems the nerves have been excited, but the messages to turn them off (inhibitory) are not coming through. Is there anyone who has had a positive effect from taking natural serotonin remedies or other neurotransmitters?

Thanks
sg

SG, I do not tolerate any of the SSRI nor SNRI drugs that alter serotonin levels, I develop serotonin syndrome. I tried some of the natural supplements like 5-HTP that convert to serotonin but I can't tolerate them either. I've told doctors there is nothing wrong with my personality so no wonder it doesn't like them trying to alter their levels. .

Just make sure to read the side effects and interactions with any of the supplements you might decide to try. Purchase a reputable brand, even if you have to spend a little more money to make sure you are getting what you want. Looking at Amazon reviews, asking your chiropractor if you have one what brands they deal with, doing some "Google" research on a specific substance to see what brands individuals are recommending will be very helpful in your search for the best natural supplements to try, if that is the route you decide to go.

sg300 wrote:
I also wonder if it is worth looking into neurotransmitter imbalance, serotonin etc. to see if that can affect these symptoms, since it seems the nerves have been excited, but the messages to turn them off (inhibitory) are not coming through. Is there anyone who has had a positive effect from taking natural serotonin remedies or other neurotransmitters?

I used SSRI antidepressants to dampen the symptoms of PGAD. I had never used them before having PGAD so my symptoms had nothing to do with seratonin imbalance but antidepressants definitely helped the PGAD symptoms and urinary symptoms. Didn't really do much for pain though. Tricyclics helped also but I couldn't tolerate the side effects.

Violet

Mod 15 wrote:SG, I do not tolerate any of the SSRI nor SNRI drugs that alter serotonin levels, I develop serotonin syndrome. I tried some of the natural supplements like 5-HTP that convert to serotonin but I can't tolerate them either. I've told doctors there is nothing wrong with my personality so no wonder it doesn't like them trying to alter their levels. .

Just make sure to read the side effects and interactions with any of the supplements you might decide to try. Purchase a reputable brand, even if you have to spend a little more money to make sure you are getting what you want. Looking at Amazon reviews, asking your chiropractor if you have one what brands they deal with, doing some "Google" research on a specific substance to see what brands individuals are recommending will be very helpful in your search for the best natural supplements to try, if that is the route you decide to go.

What is saratonin syndrome?

If slowly coming off an ssri is indeed what caused your pgad, even though youve been off of it a xouple of months,i it dumb for your dr.to prescribe tricyclic antidepresant instead?? Even though it is a different class of drug? I have several legitament possivle caused of my pgad,so I cant say for sure ssri use is what caused it, I was on a pgad support group but I found it too uosetting to stay on there so I am asking you ladies instead. Thanks for any advice.

I don't think it's dumb -- I think it makes a lot of sense but you might want to request to start on a low dose and titrate up. My thoughts about these drugs are to stay on the lowest dose possible that gives you relief. Have you thought of trying to go back on an SSRI? If you do I would chose something other than trazadone but it might be worth a try if the tricyclic doesn't work. The therapist I saw when I had PGAD told me that it's safe to use SSRI's indefinitely and that they may actually keep you from getting sick. I don't know if that's true but here is one interesting study.

http://www.ncbi.nlm.nih.gov/pubmed/22251606

Violet

Violet M wrote:.

I noticed that in the treatment list you copied from Jeannie's forum, nerve blocks were listed as one of the options. Here are my thoughts on nerve blocks and PGAD. For starters, nerve blocks can cause PGAD. I know one women who developed severe PGAD from steroid nerve blocks and it has not gone away yet. There are others I know of who developed PGAD temporarily from nerve blocks but eventually it subsided. I think nerve blocks can be a valuable tool for diagnostic purposes but I would go for a Hollis Potter MRI before I would go for a nerve block because there are no risks of getting worse.

If you are a person with PGAD lurking on the forum reading this thread, I just want you to know that you are not a freak, it's not all in your head, and there are treatments that can help. So keep your head high and keep searching for answers.

Violet

I know this is an old post,I was actually on google searching nerve blocks and pgad and it brought.me to this old post. Okay, I would love to know what type of nerve blocks can cause pgad or make it worse? You knew someone that develiped it from a nerve block? Is it more dangerous when its done specifically on the pudendal nerve? Or more dangerous doing it vaginally? I realize nobody can say for certain but I just dont know much about this and Im having my first pn block this Thursday. Not sure on all details yet. Im wondering if having it dont vaginaly will just increase.my.pgad. My dr. at Emory it ATL said ther isnt much risk in nerve blocks but now I jusy dont know