PGAD - persistent genital arousal disorder

[Emma B]

Hi there, I have been experiencing what I believe is PGAD for the past 5 days. I haven't had any pain but constant arousal...it's very mild but I did get panicked because it hasn't gone. I also have Epilepsy, MRKH (I was born without a womb and vaginal canal but created one using dilators) and Menieres disease which has made me deaf in one ear. I dunno whether it's all related... I'm an optimistic person and have a hospital appointment scheduled for this but i can't help but feel sad that i developed another condition. I had only just started enjoying sex and now this happens. Im only 24. Will i ever have normal sex again without constant arousal?

Thanks

Emma

[Laurina]

You sure have been through many health issues, Emma and I am sorry that you seem to possibly have developed PGAD. That said, some women have very short episodes and the symptoms can go away by themselves for months or years. It is always good to get checked out medically, in case there is an infection or there is an abscess in the affected area. Hopefully, your symptoms will be of short duration.
Assessment and treatment by a qualified pelvic floor physical therapist is also a good place to start if you feel you need further medical care.

[Violet M]

Hi,

I'm not sure exactly what the mechanism of action is for clonazepam or if your symptoms are due to withdrawaI from it. I don't know if it is possible the pills could have been masking your symptoms and going off of them allowed the underlying symptoms to manifest themselves. The fact that you had vulvodynia too makes me wonder if you have some pudendal nerve involvement and whether the PGAD is related.

You have probably read some of the ideas for symptom relief if you have read the posts in this thread. It might not be a bad idea to just have an evaluation from a physical therapist who treats pudendal neuralgia to get their input on whether you have pelvic floor tension that could be irritating the pudendal nerve. So when you have your appointment with your PCP you can ask them for a referral for PT. If you can stay calm and matter-of-fact with your PCP that might help you achieve getting what you need.

In the meantime, I think the important thing is to try to stay busy to keep your mind off the problem and to use as many therapies as you can for symptom relief if you experience symptoms again -- like ice gel packs, topical ointments, and oral medications if your doctor will prescribe them. You have lots of options you can try so please keep your courage up and just do what you have to do to get the treatments you need.

Violet

[Violet M]

Actually, I know a number of people who have gotten rid of PGAD symptoms, including myself. Some people got well from PT, some from surgery, and some manage it very well with drugs. The whole purpose of this forum is to let you know that you have options and you don't have to accept an answer from a doctor that you just have to live with this the rest of your life.

So, it's OK if you are emotional at your doctor's appointment but also try to be factual. If you explain it to the doctor that you think you might have pelvic floor dysfunction and chronic pelvic rather than PGAD and ask for a referral to a PT, that might be the best strategy. PGAD can be considered a pain syndrome, especially if it is accompanied by pain which it sounds like yours is. You can read what Dr. Echenberg describes it in his article in one of our newsletters. http://www.pudendalhope.info/sites/defa ... ne2013.pdf

Violet

[Violet M]

Well, some women say they got PGAD from coming off of SSRI antidepressants like lexapro. I had never taken SSRI antidepressants when I got PGAD so I knew it couldn't be associated with that at all. Some SSRI antidepressants can suppress sexual response so decided to try lexapro and it took away about 75% of the arousal symptoms but not the pain. When I eventually was better and decided to go off of lexapro I was worried coming off of it could cause PGAD symptoms so I weaned off very slowly. I cut back by 1/8 pill a week so it took 56 weeks to come off of it.

What were my initial symptoms? I had been having some vaginal pain that felt sort of like a toothache. Then one night when I went to bed I had an arousal feeling in the vaginal area -- sort of like feeling on the verge of having a muscle spasm that never went away. I also would get little shocks at night that felt like mini o's. I could feel the shocks going along the course of the nerve. Sometimes clitoral arousal but it wasn't as bad as the vaginal. I did stretching exercises recommended by my PT but those just pushed me over the edge into pain too.

Yes, some people have spontanous o's but not everyone does. For some people it's just a feeling of being on the verge of an o all of the time.

I can't say for sure about the train because I never rode the train during that time. Maybe it would help if you stand up while on the train if that is allowed.

I think you are on the right track seeing a pelvic pain specialist. I think it would be good if you can see a pelvic pain physical therapist too.

Violet

[Belle]

Greetings I wrote to this forum back in December when I was living Africa and could not get any diagnosis or treatment for what I think is PGAD. I felt I needed to write today, as I'm going through a very rough time. I came back to the U.S. for an appointment with Dr. Echenberg, which will take place next week. Since I've been back, I've seen an internist, gynecologist, and neurologist (recommended by the gynecologist). None of them (as expected) had heard of this disorder. Since I've been back my symptoms have gotten so bad. I think anxiety, being away from my family, and my uncertain future have really made this situation a mess. I now have almost constant arousal deep inside the vaginal area. It feels like it comes from a nerve. I clench my teeth from anxiety and this really brings it on. I feel it run through my throat and right arm. From reading these posts, it doesn't seem like other people have these same nerve issues, so this is concerning to me. I've graduated to now having a mini orgasms just from clenching my teeth. It totally sets the nerves off in the pelvis and vulva/ vaginal area. I can't believe this is happening. I'm sorry if this is too much information, but I'm so upset about this. I feel sick all day long and cannot even function. I can't imagine living like this every day for the rest of my life. I literally wake up in the morning and it just starts. I basically shake all day long. What the heck is going on? I'm 46 years old and currently staying with my mom. She has no idea about PGAD. We've never been very open about talking about sexual things, which makes this even more difficult since it's hard for her to understand. The neurologist did want to start me on gabepentin, but since my appointment with Dr. Echenberg is next week, I thought maybe I should wait to take it since he may feel a different medication will be better. I'm feeling a bit desperate now, so maybe I should just start it. I know it will also take time for it to maybe help. I'm completely desperate and cannot live like this any longer. Nobody understands this condition and I'm completely sick about it. I wish I could just take a pill to make this go away!

[Violet M]

Hi Belle,

I was about your same age when PGAD hit and my mom came and stayed with me. I had difficulty functioning too and also had nausea so I didn't feel like eating. My symptoms were also deep vaginal and were constant. I have known other women with PGAD whose symptoms are in other areas besides just the pudendal neuralgia distribution area -- for instance I know one woman who had it in her back.

I just want you to know that you have a lot of options and there is a good chance you will be able to get your symptoms under control and live a good life. You do not have to be resigned to living like this the rest of your life. I rarely have symptoms anymore and if I do they are very short-lived.

You may be wise to wait to see Dr. Echenberg. In the meantime you might want to try inserting ice balloons vaginally if you can't get to sleep at night. Push them up against the all of the vagina for a numbing effect. You could also try some extra strength vagisil numbing cream.

Violet

[Belle]

Thank you so much, Violet, for all of your advice and support. I almost felt like going to the hospital last night because the nerve deep inside the pelvis near the bladder was just firing off and I literally couldn't even think straight. I was in complete misery and just wanted to be knocked out. I knew an emergency room doctor would have no idea what was going on, so I decided to take a xanax and finally was able to get to sleep. I'll have to try the ice next time. Today, I just have a feeling of severe heaviness and tightness. Every day the symptoms seem to change. It's just awful. I hope Dr. Echenberg can help. I know this will be a long process and anxiety definitely makes the symptoms MUCH worse. We all will get through this. Thank you!

[Violet M]

Belle,

I used a drug related to xanax (clonazepam) to help me sleep. It also has some anti-seizure properties and helped to lessen the shocks I was getting so I preferred it to xanax but if xanax works for you that's great! You have to use whatever you can to get through this. If you use ice, I should warn you it can be a little intense when you first insert it so you may have to slide it in and out several times while you get used to the cold.

Violet

[Belle]

Thank you, Violet. Quick question for you - Did you use Clonazepem every night or just when you felt you were uncomfortable? I worry about using Clonazepam and/or Xanax daily.