Health Organization for Pudendal Education

Hi DES

What an awful time your having, you poor thing. I know how your feeling regarding the pain/arousel cycle, but all those other things you have to deal with must be difficult. You are so strong to be getting through it all.
Have you tried a lidocaine cream for the clitoris during arousel. It might help with it for a few hours. What about Lyrica for the pain. Im on 2x75mg at the moment,may have to increase though. Its hard isnt it having the pain & then arousel. Its like you feel like you get over one part of it then on another day it knocks you down again. Im still not back at work. Im going to the womens hospital here where they are seeing two other women with the PGAD/pain cycle. I think it will be a long road with a lot of trial & error. At least they have seen it before so I wont feel to weird describing my symptoms and having the comfort of having doctors treat you seriously helps with the mental side of things. I often bargin with myself, thinking if they could take the pain away I would deal with the PGAD but of course I see that Il be stuck with both for a longer time then I wish. I hope one day that Il be able to manage a relatively normal lifestlye, in fact I dont just hope for me, I hope for all of us dealing with this unusual condition.

Des you are amazing & the fact your getting through all of this shows how strong you are. Il leave you with my new favorite quote.

“When things are bad, we take comfort in the thought that they could always be worse. And when they are worse, we find hope in the thought that things are so bad they have to get better.”

You have my best wishes DES

Kate

Like the song says "if it ain't one thing , it's far too many others". . . or something like that, I may have upped the quantities!
UGH! DES you are going through it, I hope that the antibiotics take effect quickly. You could do with a break and a reduction in stress levels for sure.
take care of yourself.
Helen

Thanks Helen and Kate..

I asked my doc about the lidocaine gel for the pain, and he's leery of using it there. I did get a cortisone cream that's begun to help with the intense feelings associated with the pain cycle, and it's starting to help.

He did give me Lyrica to try (2x75mg) but reading the package insert it says not to start it when starting other new meds, and since I've started the cream now and tomorrow the foam, I'm reluctant to throw that into the mix in case I do get better and don't know what's helped me the most. I also only got a week's supply as a trial package, so don't want to run out and not be able to get more if I find it does help.

I'm the tiniest bit more at ease since we got the patio door replaced today. I was home last week for a home invasion robbery and got injured a bit when I confronted the robber and scuffled with him. Knowing I have a new secure door between me and potential invaders should take a bit of the stress off my shoulders. I didn't feel safe with my old door only being able to be locked from the inside.

Thanks so much for the quotes.. Useful and comforting! I've just learned not to say "What next?" because I don't usually like the answers I've been given lately!

DES,

WOW.....you have way too much going on in your life right now. I would have lost it!!! Good luck on the cream and let us know how the lyrica works for you. Some people need to take it for several weeks to get the full benefit from it.

take care
cari

I'm holding it all together, but barely. I haven't known this much depression since my Mom passed several years ago. I'm weepy when I think of all the things that could have gone wrong. I'm upset that I'll likely never see my wedding rings again, and they were likely traded for drugs. I haven't had a decent night's sleep in more than a week and when I fall asleep, I keep seeing 'him' at the bottom of the bed, taking my jewellery and money.. Then there's the whole 'losing the bath towel' thing when I tried to get my stuff back..

Yes, I'll hold off on the Lyrica until I can ask my doc a bit about it. I see him again on Thursday.. He wants to look at my incisions and make sure they're doing okay..

It has to get better, it has to get better, it has to get better!

(((hugs)))) It will get better, it will get better, it will get better.
Helen x

The corticosteroid cream has helped an amazing amount in the few days I've used it. First couple of days were a bit painful after applying it, but it's really calmed down a lot. Whew!

The foam for my 'roids works quite well too, although they're still a bit painful. Nothing I can't manage I guess. The incision for the cyst is healing a bit too fast I think. I finished my antibiotics Sunday AM, but there's still oozing happening. I hope it doesn't heal before everything comes out of it..

I'm only averaging the 4 hrs of sleep a night, and it's filled with bad dreams. I have the number for Victim Services so I'm going to call them and find out the particulars about talking to someone to get rid of my depression and maybe tips on getting a better sleep and being less paranoid. I jump at the least little sound. The stress just perpetuates my PGAD and my body needs a break..

I think that's a good idea, to get some support along those lines DES. You've been through way too much recently. Some psychological support would be a very good thing - you should take all the help you can get.

I was lucky enough to be referred (by my GP) to a psychologist pretty early in my PN journey, she helped me enormously both with pain management and also dealing with the stresses in my life, I was getting very depressed and anxious, not sleeping etc. I think she helped me more than any medication, I still use what she taught me every day.

So glad that the cream is helping, that's excellent. And if you are in any doubt about the cyst, go back straight back to your doctor. I do hope it settles soon.

I'm sure that talking with some one will help, I think that fact that you are reaching out for help is also a good sign in that you are not willing to wallow in it or let it continue. As Calluna has said if you can get the right treatment with the issues you have it can help tremendously.
I had some counselling and was amazed at my outpouring of grief that ensued. She was more focussed on my husband ? ? but just the talking did me good although I realised that some change in my circumstances was needed for some practical resolution. I guess that's where the CBT and 'acceptance' comes into it. Nothing has changed for me unfortunately UGH! I could really do with some again as I feel as if things are really stacking up against me. Good luck to you on that front.
I hope that you can put the burglary incident behind you, I'm not saying that tritely as if it will be easy, but with help I hope it will happen soon because you have other things to concentrate on. I know you have a good sense of humour which helps and will get you through but that is sometimes an excellent shield to what's really happening, remember to think about yourself because you are important.
Take care,
Helen

You ladies are wonderful and you're going to make me cry.. I've been so bogged down in all the negative, painful things happening to me lately it's sometimes hard to see that things will or can get better. Getting some relief from my cycle of stress and pain will surely have a positive impact on lessening my PGAD and sleep deprivation.

I talked to the lady from Victim Services again yesterday. She's going to do some legwork for me and get in touch with the officer in charge of my case, to see if the police are filing their own assault charges against the intruder, or if I'll have to do it on my own.. Which I have nooooo problem doing after he's left my life a living hell..

I also was given a contact at Family Services and made an appointment for a counselling session this morning.. I'll be going there in a few hours, taking the first big step to getting my life back again.. I don't expect miracles the first session, but I get 6 sessions free if I need them, then have to pay after that. They offer an 'Immediate Intervention' program here so I can see a counsellor right away. Regular intake through Fam Services has a waiting list, which is no good to me needing to talk now.

I'll let you know how it goes, and whether they can provide me with some coping tools so I can try to manage my stress and pain. Thanks for your concern and support.. It means a lot to me.