PGAD - persistent genital arousal disorder

[Violet M]

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.... I get arousal and feeling of constantly needing to urinate and I have been told this is pudendal neuralgia.... 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

Sounds exactly like what I had. Can't say I didn't have any clitoral involvement but the worst was deep inside including shocks that made the muscles contract. Sitting on a toilet seat never helped me. I'm 99% cured of PGAD since surgery so I think the diagnosis of PNE was correct.

Violet

[Melanie9999]

I am so glad to hear that your surgery worked for you! I have been told that surgery for pudendal neuralgia doesn't really work and they don't go down that line of treatment here in the UK or in France anymore?? That seems worrying if it can work. I am having physiotherapy for the pudenal neuralgia so I am really hoping that will help but I have got to the point where I am depressed and feeling that nothing will take the pain away. I am having nerve blocks too but the Consultant told me they don't normally work either. Not giving me much hope at all! He said it is not fair but I will probably have this pain forever to some degree. I am so scared because it is hard to live with this horrible sensations, I have to be knocked out by Amitriptyline at night and I am gaining so much weight on them that I am depressed about the weight gain too, it is a vicious circle and I just want to have a normal life, not painful, depressing and fat life! I am now a size 18 to 20 which is not a nice feeling and years of chronic pain and many medications have not helped I'm sure. I am having psychotherapy for the feelings I have towards my illness and my weight but I still feel depressed every day. I hope everyone gets better one day, that is what I wish for more than anything in the world xx

[Rosemary]

I have been told that surgery for pudendal neuralgia doesn't really work and they don't go down that line of treatment here in the UK

Hi Melanie

This is what i have been told by my pain management consultant here in the Uk - there are no routes through the Nhs.

I have seen Dr Greenslade privately in Bristol - he is listed on this site - would that be an option for you to get another opinion ?

I haven't got PGAD but vulva/inner thigh pain and was on amitriptyline for two years - it has now been changed to Nortriptyline which is similar but less sedating - a change to this may not knock you out so much. I've now got a fat belly and thunder thighs but would now trade that against pain freedom any day.

I am going to do some research into what there is in France - (easier to get too than America) - there is information on this site - i am sure there are still options there but the Nhs won't pay for it. It may well all be too expensive for me.

I am seeing a psycologist too - hope you are not feeling too depressed today.

Rosemary x

[helenlegs 11]

Hi Melanie,

Welcome to hope.
I really think it depends on who you speak to with regard to attitudes on PN surgery. I think the uninformed have the 'surgery is not effective' take on it and even some more knowledgeable but the European guide to chronic pain does say that pudendal decompression surgery should be offered just as it is for other entrapped nerve syndromes like carpel tunnel etc. It then goes on to say that any decompression surgery is less effective the longer a nerve has been entrapped (I think the age of a patient may make a significant difference too??)
The surgical results for this surgery may not be stunning but A lot of that must be to do with the fact that patients are diagnosed so late. Any surgeons tacking this, are up against a huge backlog of people who have had almost no targeted attention for a problem where timely treatment is favorable. I don't think surgical results will be good until we have essential diagnosis and treatments available without the delays experienced.
Hopefully things are set to change in the UK as the NHS chronic pelvic pain diagnostic and treatment pathways are being formulated at the moment. A bit late for a lot of us sadly.
Swimming (not breast stroke) can be an activity to try? got to say that I promise myself that I will do this or aqua aerobics, then never do, if only I followed my own advise Having PN is difficult for many reasons, pain is only a part of the equation. Feeling unhappy within ourselves can only exacerbate difficulties, the knock on effect almost self perpetuating, I know this only too well. Hopefully we can help some. Do you take any antidepressants at all?

Take care,
Helen

[calluna]

Hi Melanie and welcome from me as well.

I just wanted to say, please don't feel that the outlook is necessarily quite as bleak as you have been given to believe.

And I do agree with what Helen says, I don't think that it is quite fair to say that surgery for PN 'doesn't really work'. I have had all my treatment - including several surgeries - here in the UK through the NHS, although my surgery was not the usual nerve decompression but rather removal of mesh and scar tissue together with LVMR. I suppose this does make a difference! Unfortunately my surgeon was not able to free the nerve... but the surgery did help me.

However (luckily for me!) there are lots of options for pain relief, although it can take a while finding the right combination of medications, as different things suit different people.

And pain management, in particular Cognitive Behavioural Therapy, can be really helpful. There are other things that may help, as well, of course. I haven't tried physio at all, myself.

Could I ask, who is your consultant? And whereabouts in the UK are you? I am in Wiltshire.

I do hope that you are having a better day today.

[Melanie9999]

Hi everyone, thanks for your replies. I have joined a swimming pool to see if that helps with my weight and general mobility as I have been sick for 20 years so I am quite weak. It all started when I was not diagnosed with endometriosis until I was 30 because I was told I was too young to have it. By this stage it had spread too far to be treated. 4 surgeries later and they only made the pain worse by causing adhesions and frozen pelvis.

I only managed to do 2 lengths last night and today my bum pain is worse than ever and is going down to my thighs and on one side the pain is in my ankle too. I have got a tight hip (possibly piriformis syndrome) on this side and sacroiliac joint dysfunction on that side so perhaps exercise has aggravated it causing some kind of sciatica? My buttock pain is horrendous. My bladder is not too bad today although was really bad the other day after sex. I must stop that altogether! I think Amitriptyline helps that but it has done nothing for the buttock pain. It helps me sleep and I have had insomnia for 20 years or ever since I got endometriosis. I used to take antidepressants but can't take them anymore because they all cause me to clenching my jaw and even wearing a mouth guard I damaged my TMJ joints so badly and discloated my jaw, got so much pain from that that I had to stop antidepressants of the SSRI or duloxetine type. I can only take tricylics by the looks of it. Do any other tricylics work for nerve pain that don't make you gain weight? I don't think i could take the weight gain from a high dose (enough for antidepressant effect) of amitriptlyle.

I have taken Dihydrocodeine for 10 years and came off that last year because it became ineffective and gave me insomnia, had terrible withdrawals, I started sleeping better when I came off it but have had to go on it again for all these pains I have now. Now I can't sleep again. It makes me feel wired and awake for some reason. So do most antidepressants though. On 10mg of Amitriptyline they made me feel more hyper awake thank sleepy. I didn't sleep very well on Pregabalin either, although I was drowsy all day as I am with Amitriptyline. I can't seem to find a good mix of drugs and long term sleeping tablets are a no no. However, I have increased my dose to 30mg of Amitriptyline and I did sleep better so feel less stressed today, despite feeling drowsy with bum and leg pain!

[Melanie9999]

Forgot to say I have asked my GP to refer me to Dr Greenslade in Bristol for pain management but not sure if she will do it, I wrote her a long letter about it before I go and see her. She may do it, as I did end up in Oxford for endometriosis treatment (not that it helped by the time my pelvis was frozen!). I live in Kidderminster, Worcestershire.

Thanks for everyone caring xx

[Melanie9999]

Just another note, I just received in a the post my cool magic gel cushion to sit on and it feels quite nice! Seems to make the pain less and it does not need to be put in a fridge first so that is a positive. I don't really get pain in the perineum, I get pain of the whole buttocks and top of thighs. Although I do have to lie down or sleep with a cushion between my legs otherwise I feel pain from the groin/mons pubis area so my perineum probably does hurt a bit. I am babbling. Hope everyone is having a good day xx

[swarke]

Hi Calluna,

I too am from the UK, and I too have PGAD which I find terribly hard to deal with. I felt quite unable to cope and visited my doctor who is hoping for me to see Christopher Wong, but as the operation is not on the NHS I'mnot sure what will happen. I know i AM AT MY WITS END with this and am very depressed. The Pregablin didn't suit me and was making me have double vision, and being spaced out all the time so I had to come of them and am in such a lot of pain.

I was almost two years before I had a diagnosis and it was me who talked to my doctor about this and then Ihad it diagnosed with a lovely man called Doctor Winston DeMello who works in Manchester. He was funny and at the time made me laugh, but I was high on drugs and now I am so down.

Any suggestions very welcome, Shirley (Leeds UK)

[swarke]

Hi,

I have just joined the group and have swollen Mon Pubis and so much pain I feel that my whole 'lady garden' is in a vice. Any suggestions would help at all. Ice packs do ease for a time and hot baths are not good.

Kind regards Shirley