Health Organization for Pudendal Education

Hope you are hanging in there. sorry to hear of your problems. I had a Tarlov Cyst which aggravated PGAD. I had it aspirated and sealed last year and the symptoms are greatly reduced. Here is my Pinterest page with more information on Tarlov Cysts and Dr. Barry Komisaruk's study of them in relation to PGAD http://www.pinterest.com/tarlovcyst/pga ... komisaruk/
i read today that Botox with spasmotoxin is being used for PGAD. Is that what you want to try?
There was mention in a blog to an article about using Hyomax (Hyoscyamine) for bladder problems and PGAD http://www.xojane.com/it-happened-to-me ... l-disorder
http://www.drugs.com/mtm/hyomax-sl.html

Good luck

Hi Melanie
How are you doing now did you have the botox and did it work? I really hope emotionally and mentally you are in a better place and remember however desperate or isolated you may feel there are always people to support and listen to you.
I saw Mr Greenslade Nov 2013 and consequently had TG decompression surgery in Bristol Jan 2014 so still in recovery.
I confess I have never had or been offered botox but if you think it may help there's no harm in making your voice and requirements heard!
I really hope you are in a better place and sending my best wishes.

Hi Poppy. I had the botox a week ago and I have to say that I beleive it is working slightly already!!!! I have a lot less PGAD and that internal spasming sensation is much milder than it was before. I hope it continues to improve with time. Does anyone now how long it takes for the full effect of botox to work? I also feel that my SI and piriformis pain is slightly less, coould the pelvic floor have been pulling my SI joint out all this time?? I asked for Botox about 18 months ago, quite annoyed that it took this long for someone to listen to me. They said there was no spasm and no tightness!! Wrong!! then next Consultant found extremly tight and short pelvic floor and arranged the botox (mr Dixon and Dr Greenslade, wonderful doctors at last). I know I am still in a lot of pain but to get any improvement is a miracle for me. Hope everone is well xx Thanks Melanie

Wonderful news that botox has offered you some relief, like you mentioned a crying shame you did not have it a while ago. We're you finally given this on the NHS or did you need to go privately. Asking this as my physio has suggested it but not sure of waiting time or cost if I go privately. Did you have TG NERVE decompression surgery with the Bristol team or exploring more conservative routes.
I wish you a continued recovery

That so good for you Melanie. Please keep us updated with your progress. Botox in the piriformis was suggested to me as well, but I decided to try ESWT first. If that doesn't work, then I'll try the botox. Did you have only the piriformis muscle injected, or others too?

Hi to update the Botox was in the levator ani, my pgad had improved about 40% much less intense since the Botox. I have had diarrhoea a lot but it is worth it, my piriformis pain is still agony, really want Botox for that next but dr greenslade discharged me! I was not happy he is confused he thinks I'm ok now but pain is still horrendous only pgad has improved xxx

Melanie, have you checked whether he will take you back? Surely he would reconsider if he knows the facts.

Violet

Hi,
I have read in an article that Botox treatment is highly preferable for PGAD.So you should definitely go for it, but make sure you get it done by professional surgeons. In that they also suggested the use of LIFT BLUE suction cups to massage that particular affected area to avoid other skin problems.

Suzi, can you tell us where you found the article on Botox and PGAD? Is it in peer reviewed literature? Melanie already tried Botox, BTW.

Since you are a first time poster and we don't know you very well, I have removed the URL link from your post because I'm not sure if you are posting it for advertising purposes or whether you have personal experience with LIFT BLUE suction cups and I don't know anything about the reputation of the website. Could you please introduce yourself in the welcome center and tell us your story. Thanks,

Mod3

Hi,
Thanks for the reply. I just shared my experience , I am using it & as I found it really useful so I am recommending others to use it. It is not for the sake of advertising purpose. I provided the link so that members can check the other details as well.