Health Organization for Pudendal Education

calluna wrote:Not tried bupropion, nor have I heard of anyone who has - but I can see why your doctor thinks it might help. This stuff alters dopamine levels, and there are documented cases where this has helped with PGAD. Definitely worth a try, I'd say! Your doctor seems to have been doing her research and thinking about what might help, I would be quite impressed by that. And she's picked a well-understood medication, which is always a good thing, if possible.

With this condition, what works, what doesn't, and why - we are still finding out.

All of us would much prefer not to be taking any meds at all - but it comes down to quality of life, really.

If it is a dopamine level issue, does that mean that the dopamine levels changed at some point causing the pgad onset. If the person has always had dopamine levels that were not normal, then wouldn't the person always have pgad symptoms? Just a question. I may consider asking my doctor for the bupropion. Pretty much willing to try anything at this point.

This is my first post. I'm a male with pgad, for about 6 years. Just finally had left sided PN surgery, a month ago, TG approach. Still in quite a bit of pain from surgery and the symptoms are still there and worst at some times. I think this is normal and I'll have to wait at least months or a year plus before seeing any improvement.

Welcome Happs. Sorry you are on this journey with us.

Bupropion is one of the drugs that can cause priapism so you may want to think twice about it. http://www.ucsfhealth.org/education/dru ... index.html

Can't remember if I posted this yet in this thread but I know one gal who has not had PNE surgery who uses burprenophine (completely different class of drugs from bupropion) and it completely gets rid of her PGAD and pain. It's one more drug to add to your list of things to try if nothing else works. Best wishes on your recovery.

Violet

I just signed up to the site yesterday. In retrospect I have had PGAD since middle school, and I am 40 now. I have PNE, and I'm so overwhelmed. I have been dealing with PNE for the better part of 9 years by myself. After reading some of the material, I feel not that I am ending a journey, but that I am starting one. I am going to be numb for a few days. I do not know,...I am applying for SSI, and I do not know why I waited so long to do so. I have been so much worse than most of the comment's I have read. I am,...going to,...ease into this site.

I've had almost constant pain since the middle of March. A couple days of relief, but no more than that. The arousal dampened down to a level I could easily live with, but now it's back again, along with the pain. I was ready to taper off Lyrica completely (I'm only taking 25mg once per day), but now I might have to increase it again or find something else. I'm on 60mg of Cymbalta, plus my diabetic meds & some supplements for RLS, forgetfulness & weight loss.

The arousal had decreased so much I was praying it would just go away, that it just MIGHT go away on it's own.. The pain has been hard to deal with, & I've really resisted taking more Lyrica. I don't like the side effects at all, & I remember what they were like when I first started it.

The pain is like someone has a wire BBQ brush & is pressing it into my upper labia & clitoris area. Prickly & itchy, but I don't have an infection. I guess it's just the nerve screaming out that it's irritated.

I'm waiting to see Dr G in early May for my follow-up to my MRV. I hope he can find a reason why this is happening. It really gets discouraging thinking this may be my life for the rest of my days..

DES, I'm sorry things aren't going so well for you right now and I know how hard it is when you have to wait for so long between appointments waiting for the next step in your treatment. I think the chances are good that with the right treatments you will not have to live with this level of pain and discomfort permanently. When you go for your next appointment make it clear to the doc that you are not coping well with the level of pain/discomfort you are in and hopefully they will have a sense of urgency in moving you forward with the next step in your treatment.

Violet

Thank you everyone for your thoughts on my previous post. I ended up deciding not to take the drug due to seizures and I hadn't found anyone who has tried it for PGAD. My Doctor has now prescribed Lycira -I have found some posts on this site, but does anyone have any success with this drug and their PGAD?

Pretty discouraged right now -as I know a lot of others are...

Grateful for any info.

Jenny

I do remember Calluna saying that slow release tramadol helped with her PGAD, but I would say that Lyrica is reported to have helped more people with the various PN symptoms but I'm not sure if that specifically includes PGAD, sorry. Everyone reacts differently, that's the thing Jenny.

Sorry to hear that things aren't great at the moment DES. I hope that your up and coming appointment with Dr G helps.

Take care,
Helen

I'm going to see my own doc in a few hours. Hopefully he has some suggestions for me to try instead of Lyrica. I found when I was on 75mg twice/day that I was having breakthrough pain, and for me the side effects were numerous and very bothersome. My doc said I could go up to 300mg/day, but I opted to taper instead.

I'm wondering if only being on Cymbalta will be enough. Both my docs agree I can move up to 90mg/day. It's so darned expensive though.. I've been going through some stress the past few weeks, so I wonder if that's aggravating my pain also..

Guess I'll find out what he recommends in awhile.. Thanks everyone for your warm thoughts.

Hi Jenny
Lyrica has been of tremendous help to me. It is helping calm my irritated pudendal nerve. I have been on it steadily for over a year and that with the rest of my treatment is keeping my symptoms under control - my doctor did 3 nerve blocks which helped break an acute pattern. When I went off Lyrica for about 4 months, I was getting more unusual sensations all over my body. My specialist explained that we had stopped the medication too early, and I still needed it to rewire the nerves from Down There to my spinal cord. She said that it was common for patients to say that this medication wasn't helping until they stopped it. That was my experience, and I am so much better off now that I am taking it again.
To avoid being sedated during the day, I just take a small dose in the morning and the bulk of the dose at suppertime. Good luck giving it a try.
Laurina

helpmeplease2013 wrote:Thank you everyone for your thoughts on my previous post. I ended up deciding not to take the drug due to seizures and I hadn't found anyone who has tried it for PGAD. My Doctor has now prescribed Lycira -I have found some posts on this site, but does anyone have any success with this drug and their PGAD?

Pretty discouraged right now -as I know a lot of others are...

Grateful for any info.

Jenny

Does anyone else get the arousal feeling more from pressing on the bladder area or stomach and feel somethng internally rather than on the outer vaginal area? I have persistent arousal but I feel it is coming from deeper inside, and not in the clitoral area at all. However there has been some dulling of this pain since I started amitriptyline but if I have sex it all starts again. I am really fed up but I am also concerned that my symptms are different to everyone elses?? I get it from wearing tight clothes, I have a laparotomy scar that my PT says is attached to my bladder and I have a frozen pelvis (from surgical treatment for endometriosis) therefore there is no space for all my organs to move around. I get arousal and feeling of constantly needing to urinate and I have been told this is pudendal neuralgia. I don't trust doctors any more. Does anyone think this is the same as they have? I also have burning buttock pain when I sit down although I still ahve it if sitting on a toilet seat. Thanks Melanie