Health Organization for Pudendal Education

About two weeks ago, I started having this strange arousal feeling in my genitals, completely unrelated to a desire for sexual activity. Orgasm does not relieve this feeling. It is pretty much constant and I can't control it, it is making me feel like I'm losing my mind.

I have spent a lot of time researching on Google, and best I can figure is that this may be Persistent Genital Arousal Disorder. I am Bipolar Mixed and have been on Seroquel for about a year and a half (it was up to 500 mg. at one point) but it has made me so drowsy and affected my quality of life so badly that I have insisted upon a tapering of my doses and am now at 100 mg., hoping to go off entirely. I have read that PGAD may be caused by sudden cessation of SSRI's, but Seroquel is not an SSRI, so I don't know if it may have any of the same withdrawal side effects. Right around the time I started decreasing the Seroquel, my doctor added Lamictal to my list of medications. I wonder if the new medication could have given me this condition, but there is no research I found to support this.

I also had electro convulsive therapy (ECT) treatments back in late September/early October.

I have an appointment with my psychiatrist next week but I am so embarrased to talk about this.

Does anyone know if PGAD can be due to tapering of an atypical antipsychotic or start of an anti-epileptic medication, or a possible side effect of having had ECT? Thanks in advance.

Hi morningstar, and welcome!

First of all, please, please don't be embarrassed to talk to your psychiatrist about your PGAD. How can you expect to get any help keeping it to yourself? The issue is bigger than you can handle alone, so by taking a few deep breaths and letting him/her know is the first step to getting better.

I also have PGAD now for almost 8 months. There is a thread on here in the 'Causes and Effects of Pudendal Neuralgia' forum, so please go there where you'll find lots of info on PGAD.. I was totally embarrassed to speak with my GP about it, but screwed up the courage to do it, and he has been quite helpful in getting me the tests to find out what's going on. This is the classic 'Journey of a thousand miles beginning with a single step' and you have to take the first step in order for it to happen.. Don't be afraid, there are plenty of people here in the same boat with you.

As for your meds, I can't answer that one, but hopefully someone here will be able to help you. I'm on a low dose of Lyrica (75mg twice a day) and it's helped me to cope with the pain cycles fairly well. It does make me drowsy and a bit confused, but I've just learned not to drive when I know it's going to kick in.. I do hope someone here can help you with your question on your meds.. and do check out the PGAD thread before you go to see your psychiatrist again.. It does sound like that's what you have.. Good luck and let us know what happens.

Hi morningstar, I'd like to say welcome too.

I completely agree with you about this symptom, I found it awful, much worse than pain.

Please do talk to your doctor. I know it is not easy - I was terribly embarrassed talking about it, even after three children and many gynae ops. But my doctor has been nothing but helpful and sympathetic all the way along the line. Remember you're not alone in this.

I don't know about the effects of stopping quetiapine and starting lamotrigine - but I do know that quetiapine affects dopamine, and that dopamine, like serotonin, is a neurotransmitter. Lamotrigine I'd think unlikely to be the culprit - if memory serves, it has been found helpful for neuropathic pain although it is not much used for that, due to other issues.

I really do think you should talk to your doctor next week. Who know, he/she may know all about it. In the meantime, icepacks can be helpful.

Unfortunately my appointment had to be postphoned due to scheduling conflicts on my end...but I did get up the courage to call the doctor's office today and tell them what has been going on. I got a call back from my psychiatrist this afternoon. I was very disappointed that he had never heard of PGAD. I told him about all the research I had done and he said the best thing to do would be to stop the Lamictal and see how I feel in seven days. If I am not any better, he said to see my gynecologist, but to keep him posted on how I am doing.

I am not 100% sure I am being taken seriously I'm going to try it, though, and see how it goes.

This is truly driving me mad.

Thank you for your replies I am so relieved to know I am not alone in this.

Morningstar, I've not heard of ECT causing PGAD but I know of one women who had PGAD who was helped significantly by ECT. It's not known exactly how ECT works but one theory is that it affects neurotransmitters in the brain. It seems like you would have had some side effects back in Sept/Oct though if that was the cause of your PGAD.

Is there any possibility the pudendal nerve is involved in any way due to exercise or any of the other causes listed on the HOPE website's symptoms page? http://www.pudendalhope.info/node/9 I think your doc's suggestion of eliminating the new med temporarily to see if that helps is a good idea.

Many of us who have had PGAD find ice to be very helpful. Usually it's a matter of trial and error figuring out which meds help. Extra strength vagisil might be helpful if your symptoms are primarily external. Balloons filled with water, tied off and frozen are helpful for internal PGAD. If you are having difficulty sleeping drugs like klonopin, ambien, or soma might help you sleep. Definitely avoid trazadone for sleep as it has been known to cause PGAD.

We understand how difficult this is for you and want you to know you are not alone.

Best,

Violet

Wondering about your comment aobut trazadone causeing PGAD. I was on trazadone for sleep for over a year but it quit working. then I weaned myself off slowly. I have PGAD now but not while taking the trazadone. Could going off of it caused this? and I wonder how long you have to be off to get over it. It has been over a year.
I get horrified at the things our meds are causing and we are blind to it.

Sue

Sue, one of the side effects of trazadone can be PGAD even while you are still on it -- not just after you go off of it. The women I've heard of who think they got PGAD from going off an SSRI got it right away so I really think you would have noticed something sooner if PGAD was from going off the med but I could be wrong.

Violet