Health Organization for Pudendal Education

feeling like i am going insane today...pgad is thru the roof...i am on 150mg of lyrica twice a day and 25mg of endep at night...nothing is helping today..dont know why it is playing up..pain in my back is horrendous too...just took some valium to see if that calms it down...omg i feel like I'm going mental today..if anyone is out there please talk to me...will this calm down again or i will go insane..

Please ask your dr for more lyrica. How is that different than gabapentin? I am on 3000 a day of gab. I know how when pain is so intolerable you cant stand one more minute of it. Somehow we do get through all of this. Hang on tight my dear. No one can make any promises to us. But we will get through it. Somehow.

Hi, I had this little tidbit to enjoy along with the pain and the other joys of PNE and spinal surgeries all mixed together. I was seeing a psychologist twice a week and discussing recipes mostly for nobody knew what to do with me. I had been to Dallas and nobody knew what to do with me there either. So, twice a week, we swapped recipes and paid her. She was a young woman my doctor, the Director of the Pain Clinic at the Medical School wanted me to see so I did. He put me on Topamax to see if it would help this "aliment" (PNE) I had. A few days after starting the medication, my body was acting strange. I simply told her about the problem and told her the truth. She gasp, almost fainted, and I thought I was going to have to hold her up. My mother who is elderly, called and these symptoms did not go away simply because she called. I just needed to walk, walk, walk - fast as I could. I grabbed my pill, went out the door and really began thinking. When did this start? The pill in my hand. Great! I threw it in the bushes on the corner of the street. I did not say a thing about my decision; time would tell. The symptoms went away just as fast as they came. The bush was full of pills. The Topamax. I walked several times a day which was good for three tablets. In the bush, not me. In a few days, I was just dealing with the PNE pains and the back problems. I did not need another problem. No PNE doctor ever discussed this with me. Strange, isn't it? It seems rather common. Ladies, it is not OUR problem, it is a male problem. How the problem, which is medical, is perceived. I guess we will have to educate them also. Carlie

I've had a time with doctors & such lately. My gyno is very distracted, & became quite abrupt when I said I've been doing some research on the meds she wanted me to start. I'm 52 & afraid of having a stroke or heart attack if I go on the Pill. When I go to see the doctors, my PGAD flares up. When I get overly stressed at work, it flares up also.. I KNOW mine is connected to stress & how I'm handling (or NOT handling) it..

Since I've ruled out taking the Pill for my lengthy list of female problems, can anyone tell me if having a hysterectomy might have adverse effects on my PGAD/PN??

I think if they took out all those female parts that are causing some of my problems, I'd maybe have less to stress over.. Having periods that last up to 2 weeks is certainly no fun at all. Endometrial ablation also scares me a bit. Apparently it's not always effective for someone with my problems: I've got a sub-septate uterus, nabothian cysts & fibroids, menorraghia, & adenomyosis.. It can make the rest of my periods more painful than they already are.. I'd also be worried about it aggravating my pudendal nerve. Along with my PGAD, I also get electric pain along my labia & clitoris.. Would a hysterectomy also cause PN/PGAD aggravation?

I'm really tired of all these female problems.. I'm sure it's no fun for my hubby either, waiting & waiting for my stupid period to be over.

DES, unfortunately, there's really no way to predict what the results of a hysterectomy would be on the PN. Some women had PN start as a result of hysterectomy. At 52 it shouldn't be too long until your periods stop, hopefully. I guess you have to weigh the risk of surgery against maybe several years of relief from periods. Definitely a tough decision.

Violet

Hi,
I had this genital arousal disorder for a short time during the time I was taking a medication which did no good for the PNE I had and did not know it at the time. I was giving Topomax and could not stand the stuff for it did nothing but produce this disorder. The disorder stopped with stopping the medication. Simple. It is very uncomfortable to say the least. It was totally physical, not mental. This happened to me when I was talking on the phone with my mother. I was seeing a psychologist at the time (before my diagnosis) and she was "shocked" when I told her about this happening to me. After that, I made sure I did not make her uncomfortable and talked about recipes only. Poor little child. Oh well. Talk with the doctor about changing meds. Hang in there. Carlie

Hey, Ill be going to a pain clinic soon and before I start neropathic pain meds and pgad meds, I need advice... I already have pgad and do not want to make it worse. Are there medications that can make this symptom worse that needs to be avoided? Medication I might be given for my neuropathic pain that can make pgad worse? Its confusing cause ive read SSRI drugs can cause PGAD... Yet isnt amtripteline used to try and treat it,and it is an SSRI,right??

Amitriptyline is a tricyclic antidepressant, not an SSRI.

Stephanies

Thank u.for the info. I read what Carlie said about Topomax,which is an anticonculsant class,used for epilepsy and such. Ive read seizure meds are commonly used for neurological pain... Now idk what meds to to trust to not make this worse. I thought it was just SSRI's. Any thoughts of whats safe for this symptom ans what to avoid?

It's really hard to predict without trying drugs because people respond to them differently. Initially I was put on imipramine which is a tricyclic realted to amitriptyline. It helped the bladder/PGAD symptoms but I couldn't tolerate the side effects so I tried an SSRI (lexapro) instead. It also helped the PGAD and I had very few side effects with it. Later I tried cymbalta, an SNRI to see if it would help the pain but I felt like it increased the PGAD symptoms and didn't help with any symptoms so I went back to lexapro. One important thing is to go off any of these medications slowly because going off too quickly can cause issues. I took a whole year to go off of lexapro by eliminating 1/8 pill per week.

Some people find lyrica helpful. The main problem I've heard people report from this med is weight gain. Gabapentin is a related drug that some people find helpful. Some people report it makes them "loopy". Really it's almost impossible to find a drug that doesn't have some side effects. I've never heard of lyrica, gabapentin or tricyclic antidepressants making PGAD worse or causing PGAD.

Violet