PGAD - persistent genital arousal disorder

[Kate]

Hi everyone

Well Ive had a rough couple of weeks, that consisted of a breakdown and also still not back at work. My pain has increased so im now on Lyrica 2x75mg & 20mg endep. The arousel comes and goes although I have had about a week without it.
Im getting a ultrasound of my pelvis just to elimante anything. Im sure that I have PN. I have been in contact with the PN clinic in sydney & they have suggested I see Dr Catarina Ang in Malvern. I think she does nerve blocks. I can see I will eventually be going to Sydney to the pN clinic for some help. What a nasty thing this PN is. Ive always taken my health for granted & now to see it deteriorate before my eyes is hard to take in.
Ive also been in touch with the same hospital that Marg goes too. So I guess there might be some help there.
I guess I just dont know what I should be doing.

Im not sure whats causing my PN & not sure what to ask the doctors to look for. Does the clinic in Sydney do MRI's or anything to find out whats causing the PN symptoms.
Im trying to avoid sitting, but of course its a little hard. I hope that I can go back to work. Im a waitress so being on my feet all the time should be good.

Ive never been religious but I now say a prayer everynight for all the people who suffer from chronic pain.

Lots of love to you all

Kate

[DoubleEdgedSword]

calluna, I've been lucky so far in that I just have an 'active gut' and haven't had too many problems with it so far..

Kate, sitting does bother me unless I really slouch in my computer chair, or shuffle around on the couch.. I can't stay comfy for very long in any one position.. I've found that standing also bothers me though, especially when I have to crouch to get something from under the cupboard, or stretch up to reach onto a high shelf.. I stand for hours at both my jobs, so my only real relief is when I sleep..

I went to the doc on Thurs and he did say again that nothing of significance could be found in my MRI. I'm wondering where to take this next? It's been 150 days now of arousal and pain cycles. Should I get a copy of my MRI report, or take the doc some more info so he can perhaps contact someone to take a look at the MRI? I'd appreciate any input you can offer.. I see him next on Tuesday.

[Kate]

Hi doubleedgedsword

So you have the pain/arousel cycle too. Im not at work at the moment, just laying on my tummy most days until i see a nerve gyno in december. I suggest you travel ( if you can ) & see a specialist in PN. I think that sometimes nothing can show up on an MRI. Im not completly educated in this but from what I read sometimes it seems harder then an mri to detect whats causing it.

Have you tried a topical anthestic gel for the arousel. I havent had any arousel for a week or so now, just the pain.

It seems il eventually be going down the track of nerve blocks for a proper diagnosis then i guess its on the bottox then more medications. Then after years if it gets worse I guess surgery.
The unfortunete thing is that it all takes time, & we are just suppose to go on living like nothing is going on. doesnt seem fair does it.

But def look into the specialists and what they use to help diagnois PN. Dont just think as nothing shows up on that particular MRI that there is not other things you can get done.

I have faith that you will have some help when you see the right specialist

all the best

Kate

[Lernica]

Dear DES,

Your standard MRI will not pick up damage to or compression of the pudendal nerve. Unfortunately we know only of one radiologist who can identify the nerve, namely, Dr. Hollis Potter at the Hospital of Special Surgery in New York. She uses a special software program that she herself has devised. Her contact information is on our website. So unfortunately I don't think you'll get anywhere with your MRI results, and showing it to other doctors will not help you with a diagnosis.

I recently had Dr. Gordon requisition a Potter MRI. Apparently there's a five month waiting list for Potter at the moment, so you should at the very least get on the waiting list by having your doctor send her office a requisition. As for getting it paid by OHIP, you can contact PaulSa who has attempted to do this, so far without success as far as I know. I think he paid around $4,000 U.S. for it.

I'm sorry to hear that your PGAD has progressed to pain. It does sound more and more like PN.

Warm regards.

[marg]

Hi everybody,
Kate .....
The people at the "chronic pelvic pain" clinic at the Womens Hospital share information with the clinic in Sydney, and when I had my botox block done it was Dr Thierry Vancaille who came from Sydney to do it. He didn't come just for me, he was coming to do a study about PGAD/PNE and botox and it was my physio and doctor who said they would speak to him and see what they could arrange. These ladies are 'gold' and when you see them please don't hesitate to tell them that we communicate (I'm Margaret from Boronia). We have all been in the same boat as you, just not knowing what we should be doing and coming up against many brick walls on the way, while all the time our symptoms just continue to distract our thoughts so much that it is even difficult to think straight. Dr Chia has told me that there probably isn't any ONE answer as we all differ a lot, but her attitude is 'trial and elimination' based on the idea that we try everything and she believes that along the way we will find the right one for me. There were two of us that had the botox injection on the same day and it made no difference to me but improved the other lady by 80% yet I had spoken to her and our symptoms were exactly the same !! Like you I have never been religious but I have found that the Buddhist philosophies quite useful, also I regularly tell my PGAD that I am still the 'boss' of my body and that it can be there but it can't control who I am or what I think.
Des .....
I hope you have had some good news regarding your cysts, it's more than enough for one person to have to put up with the PGAD/PN but throwing in some extra problems is just unfair, maybe you are getting all your lifes' disorders over and done with now and you will have a great and healthy later life ... there has to be balance somewhere surely ???
Marg

[Belle67]

Hi Everybody
I have Fibromyalgia and have had it since 2002 after having pneumonia twice in six months but
I first had symptoms of pgad in 2005 but after a few months it disappeared and over the next six years I've had 2 major flare ups and lots of little ones lasting a couple of hours.
Eight weeks ago I had surgery for a suspected appendicitis and the surgery 6 weeks ago for a tumour which was wrapped around my bowel so ended up with a small bowel reconnection...Since then the symptoms have been back with vengeance.
On Monday this week I travelled to see Doctor David Goldmeier at St Marys hospital in London, the relief of talking to someone who didn't dismiss what i was was saying was in itself therapeutic. He diagnosed pgad and also said he feels I have a problem with the Pudendal nerve. So I am to have an Mri as soon as it can be arranged on the NHS. He also prescribed Venfalaxine 75mg slowly increasing to 225mg as he felt not only would it help with the pgad but also the terrible depression I am suffering from. He feels that one of the main contributors to pgad is stress and anxiety. To be honest that fits with me as for the past 3 months and they are still ongoing I have had terrible problems with my 15 year daughter.
Doctor Goldmeier also introduced me to 'mindfulness' which is a type of meditation, I downloaded the 'mindfulness for beginners' from iTunes but it can be bought from Amazon etc I have been doing it for 3 days now and although its not easy I am getting my head round it and i think for the 30 mins a day i've been doing it I do not think about pain,sensations,burning etc If anyone would like Dr Goldmeier's details please p.m me, he has also said there is a lady doctor in Bristol whose details he is going to send me and i will put on here in due course.
I do belong to the other forum for pgad (not the one you pay for) a free one through yahoo but because I have now been told I prob have both I will be on both

Doctor Goldmeier did also talk about the tens machine but I really don't think i could cope with something pulsating on my genitals. I do use ice packs though and they seem to help a lot especially when the symptoms are intense.

I am no longer able to work as I was a nursery nurse and i now have a job to walk. I am praying that answers are found for all of us soon because this is no way to live our lives. I am 44 and feel about 84, I am lucky I have good friends and family that are very supportive but I still just want my life back.

This site has been a step on doing that and knowing i'm not alone has helped so much.
Belle x

[calluna]

Hello again Belle - actually, that's not where you put the TENS.... I agree that putting electrodes there just doesn't bear thinking about!

The TENS electrodes go either side of the spine, over the sacrum where the pudendal nerve joins the spine. It does help a bit with pain, not so much with PGAD though.

I have come across mindfulness before - not as a course or anything with that title, but as an essential part of pain management using CBT, which I can recommend unreservedly, it has helped me more than any med in getting through this. I agree with you, it is not easy, but very much worth the effort that it takes.

[Sheatina]

I am happy to say that I am glad that I have found this forum. I really hate it that I have this problem and my heart breaks for each of you who suffer with this condition. I mean, we are really suffering!! People try to make this sound funny or exciting or something, but it is painful and it is ruining my life. This problem started after a fall for me and I have been searching for help for quite some time. I do have symptoms of PN, but I have been unsure if this is causing this. I don't know what else to say except that I feel like crying. Blessings, Sheatina

[Violet M]

Belle, Dr. Goldmeier is a wonderful person -- I'm glad you have met up with him. I agree with Calluna -- definitely don't put the TENS electrodes near the genital area when you have PGAD!

Welcome Sheatina. You are not alone. We understand what you are going through and hope you will find some answers here.

Violet M

[DoubleEdgedSword]

It has been a very trying couple of weeks for me. While the PGAD has fluctuated between a 3 and a 7/10, my stress levels have been through the roof.. I firmly belive that stress plays a big role in my disorder also.

I'm still in a pain cycle but it diminished just a bit Wednesday. I went to the doc on Tuesday originally for the cyst in my breast that was bothering me (it had broken open on Sunday and I spent a couple of hours trying to get it to drain). I told him of the pain cycle I was having and he had a look after I described the itching, sharp pain, heat and redness. He prescribed me a corticosteroid cream which I used on Tuesday night and three times on Wednesday. I must say it has begun to help me manage the pain, although it hasn't disappeared.

I also had a flare-up of some hemmorroids that wouldn't respond to Extra-Strength Prep-H. He cut those open and removed blood clots from them, and gave me a special foam to use once the bleeding stops. He also tried to aspirate some of the abscessed stuff out of my breast, then ended up cutting it open and draining it.. I was already on antibiotics for that.

Add to it my traumatic incident of last week (I got 2 fractured toes out of that deal) and you can see that the stress level is through the roof. All my "target zones" are out of commission at once.. it's a "pain trifecta"!