Health Organization for Pudendal Education

This is all new for me. I have been digging into the internet in search of help. Multiple names for what I have.... PGAD is one.
I was so filled with anxiety I saw my general Dr. and brought in a print out of what I am experiencing and it included some of
the medications used. It is not working well and I don't really understand when to take which med. I have been able to be open with
my husband, my Aunt, some of my children and a few close friends that helped me to laugh and encourage me. I hate to sit, and I hate
to drive, and I hate to wake up.... cause there it is just waiting for me. I have begun riding a recumbent stationary bike and music helps.
Looking for advice....

Give up the bike even though it is recumbent. There are plenty of other exercises to do.

There are lots of medication combinations to try. Everyone is different and it is trial and error to find what works.

Seek out a really good pelvic floor physical therapist. Some individuals find that helpful. See if there is a dr. close enough to travel to that specializes in pelvic pain for a good evaluation. It takes time to weed through all the different diagnosis that can cause PN/PNE.

Hi Yvonne,

Welcome to the forum. First piece of advice I have is to remember that there are many treatment options and that things are likely to get better with the right treatments. Don't know exactly where you live but there are some good pelvic floor PT's in Colorado. I agree with nyt's suggestion to see one of them.

In my article that you can access from the homepage at pudendalhope.org there is a discussion of some of the medications that people have found helpful for PGAD. But like nyt said, it is a matter of trial and error.

Do you have any idea what started all of this for you? Exercise can be aggravating if you have a nerve entrapment so just be careful.

Best,

Violet

Hi Yvonne,

I am also relatively new to the awful world of PGAD. Violet's article has great suggestions for treatments while you do some research to find a specialist. Things that I have tried that have helped include ice, EMLA cream, (lidocaine to numb the whole genital area), valium and amitriplyine suppositories, Xanax and Neurontin. I have had a few almost symptom-free days, and when they come back they are not nearly as bad as they were in the beginning. I happened upon the Xanax by chance. I had been working with my OB-GYN and asked for something for anxiety because I felt like I was spiraling with the constant PGAD. I discovered that the Xanax almost completely resolved my sxs for 2-4 hours after taking it. Of course there are dependency concerns with using benzos, but I take one in the evening after work so I can get a sanity break. You do what you have to do to manage! I also started Neurontin a few weeks ago and it has helped quite a bit as well with almost no side-effects ...toned down the intensity. This really is a hard condition to deal with and it helps to talk to others- although I don't think people appreciate how awful it is. Good luck to you.

When it started on Oct 22 - I can't recall anything out of the norm. I am 54 years old and so my sex drive has fluctuated. But after Oct 22 -it just didn't shut off. By day 8 - I knew something was wrong and googled away and was so very thankful to find this site. I found Dr. Nel Gerig listed for Colorado and have an appointment with her on Jan 2nd. The soonest I can get in. I have see there are 2 PT that are some what in the area. I live in Parker. My family Dr. has been a blessing and I have printed out articles and brought them in. I had found quite a list of meds that you can take - but not any real direction on the best way to take them. So I take Oxazepam 10mg at night, in the morning I take Clonazepam 1mg, when I feel like I am having arousal breaking into my day.... I take a tramadol 50 mg. I also have alprazolam .25mg as needed. Can anyone give me more clarity on the best way to take these medications. I have had one X-ray - looking for cysts that have been mentioned but there were none found but a wonderful marble sized gall stone - but it is not bothering me - so not one of my worries at this time. I am scheduled for an MRI tomorrow. In 2008, I had tarsal tunnel surgery on both my feet.... and I am wondering if this is like that with the nerves compressed. I have been very open with all my family now, and some friends. I have decided I will not be ashamed for what I can not control - but feel emotional at times and just want to cry. I am wondering about using acupuncture - and wondering if others have had any luck with that treatment. Back in 2007 my tarsal tunnel was so bad I was limping, and acupuncture stopped the limping but unable to cure the problem. In 2008 after the first surgery I was given Lyrica - I came very close to suicide and I did not tell anyone until the second surgery - and I was only allowed 3 days of Lyrica and then switched to Neurontin and I said it made me neurotic - I just cried pretty much non stop - so those 2 drugs are not possible for me - as my brain seeks suicide when I am on them.

Hi Yvonne,

There is a lot of trial and error with the medications to find what works for you. Neurontin did not help me but lexapro, an SSRI antidepressant, helped quite a bit with PGAD and urinary symptoms. I tired acupuncture but can't say it helped with PGAD at all.

You might want to private message carolynm from Colorado for more info on docs and PT's.

Best,

Violet

Progress… I had to wait until January 2nd to see Dr. Gerig in Denver - but she was worth the wait. What a relief to have found a doctor with knowledge and compassion and gives hope for a brighter future. The internal exam did throw me through a loop - every spot hurt. I am now taking Clonaxepam 1 mg - twice a day and Nortriptyline 10 mg at night and a suppository baclofen/lidocaine. I have definitely been feeling more sleepy - but maybe that is the baclofen. Dr. Gerig also gave me a list of PT's in the area - many do not accept insurance - but I kept going through the list and did find one that does accept insurance and I am very pleased with her as well. I feel blessed with finding a doctor and PT. I also have a massage therapist I see every two weeks, I was sharing about my problem and some of the meds I was taking. She was familiar with them and shared how she too has been in treatment for the same issue for years. It is good knowing we are not alone.

Yvonne, I'm glad to hear you had a good experience with Dr. Gerig. Does PT seem to be helping you much and would you mind sharing the name of the PT you like?

Violet

HI Violet,
I would be happy to share my PT at Rocky Mountain Osteopathic Medicine & Physical Therapy, her name is Nicole Dority DPT,MSPT, OCS.
I had my second appointment with her this week. I am so thankful!!!

Great! I'm glad it's helping you. I will be interested to hear how things progress for you.

Best,

Violet