Health Organization for Pudendal Education

LucySky wrote: This has LITERALLY WITHOUT EXAGERATION taken all the life out of me and everything from me.

I completely understand, Lucy. I could not enjoy a movie, could not read, could not enjoy being with my family, could not enjoy anything when I had PGAD. Could hardly eat or sleep. It completely took all of the joy out of life. I think I discussed some of your possible options in a different thread so I won't repeat all of that but just wanted to let you know I understand.

Hugs,

Violet

Hi all. Haven't been to the site in awhile but wanted to check in with a message of hope. I have had PGAD and bladder issues since August of 2013. I know the misery and hopelessness it brings. But the last few months I have been feeling better, with "good days" where the intensity overall is "dialed down." My PGAD symptoms are no where near the level they were at last summer...its manageable now. I think a combination of the meds, nerve blocks and (unfortunately) a lack of exercise has helped. I do feel sad that I can't be active and have to take meds, but I am also thankful for the improvement because I have my life back.

Dr. Echenberg in PA has been the most helpful in prescribing treatments. Of all my meds, the Clonzazepam seems to give the most relief. At first, I felt sleepy and worried about taking benzos every day. But you do what you have to. Don't give up hope...don't stop trying different treatments. You are NOT alone. Most people have no idea what this condition is like, but I do. I know the misery of trying to raise a family, to work, to feel joy.... while dealing with this. But there is hope and people do get better. If not "cured"....better.

Thank you posting, Asreicher. Your improvement is wonderful news!

Sincerely,
Stephanies

Hi I also wanted to update people on how I am doing. I have had PGAD/PN for a year now and in the beginning it was very bad. I am now at a point where I feel almost no PGAD and my pain is tolerable as long as I don't over do it. I still cannot sit for very long and can only swim and walk for exercise but my life is so much better now. I am just taking gabapentin now and am off my clonazepam. I am taking 900 mg of gabapentin and feel it has helped a lot. I am going to stay on it for another 6 months to give the nerve and my brain some more time to heal and see if when I wean off it will stay at a good level. I really want off all meds as I am only 33 and don't know if being on gabapentin for life is even allowed let alone good. I am also doing chiropractor as I have been diagnosed with Sacroilliac joint dysfunction and also doing physio. I know this disorder is hard and takes a lot from us but we can get better and I may never be cured but I am a lot better. There is hope so keep strong.

Kellie

Kellie and Asreicher,

It's great to hear that you are both doing better and at least you are able to enjoy life again. Thanks for posting updates.

Violet

hi everyone, as i have stated in a couple of posts i do not have a definite diagnosis yet...ive seen 8 drs so far..they have suggested everything from pudendal nerve entrapment, pudendal neuralgia, ms, caudal equine syndrome, hormone imbalance and a few others for good measure...i have no idea what is wrong with me..but it is driving me insane at the moment..i have constant feelings of arousal which can range from severe to mild every day...i have pain in my buttocks and down my spine..if i am standing i feel almost nothing..when sitting i am in agony and tormented with these feelings of arousal...seeing another specialist tomorrow so i hope i get some answers...best wishes to everyone....Shannon

What type of doctor are you seeing next? I am not sure where you live, but if you let us know the general area, possibly we can recommend some PN(E) aware doctors or physical therapists that can help with your diagnosis. Have you had any imaging done?

Sincerely,
Stephanies

just been diagnosed with this horrible condition...drs have started me on endep and valium..only been on them 5 days...not really working yet...my question is i seem to have severe pain like sciatica pain down my buttocks and burning sensations in my lower back is this all part of this disorder or something else??

Hi Shanny, I don't come on here often because I am so ill all the time, I try to forget I have this awful condition. I have PGAD but also have severe piriformis syndrome (pain the buttocks) a spinal stenosis and SI joint dysfunction, they are hypermobile and cause severe back pain. It is so so painful to sit down and does increase the PGAD. I also have to urinate constantly when the PGAD starts up. The longer I have had these conditions the more I beleive they are all related. I am going to see a spinal specialist in two weeks I will let you know if he agrees with me. I take Amitriptyline which is the same as Endep but they are not keen on prescribing valium. It has improved the situation slightly, I used to urinate about 60 times a day now it is probably only 20 times a day and the PGAD is not set off quite as often, I can control it by avoiding sex, avoiding my bag or desk touching my abdomen which seems to be the main trigger for me. I have muscle imbalances all aroudn the pelvis due to the spinal stenosis and piriformis syndroeme. Getting Botox to my pelvic floor by Mr Dixon in May to see if that helps the pelvic floor is really tight due to all of this and it contracts instead of relaxinig. I am hoping that is the cause of the PGAD so this treatment might help. I am also scared it might make it worse but I have to try something as the PGAD more than anything makes me suicidal.

Hope everyone is OK, love Melanie

Pelvic Messenger blogtalk radio just aired a 90 minute episode on PGAD. Dr. Robert Echenberg was interviewed. Many of the associated conditions are discussed, as well as possible treatments, and leads to find a healthcare provider in your area. I found it worth listening. Here is the link:

http://www.blogtalkradio.com/pelvicmess ... l-disorder