Health Organization for Pudendal Education

I agree it would be best to just use clonazepam if you are uncomfortable. I was uncomfortable all the time so I used it every night during the worst of PGAD.

Violet

Hello everyone,
I've posted here before but am again as I've just seen this huge thread, I am reading to try and find positives, to help me get through. I am only 20 years old, I am on pregabalin 200mg and also amitriptilyne 10mg, I have spend last week in hospital and a gyno Dr assessed me and said I am showing symptoms of an nerve issue and bladder issues. I also have pgad, which keeps waving on and off I just feel so alone, my mum and nan are supportive but my partner just is finding it so hard to cope, he keeps saying "it will get better" but I don't have much hope if im honest.. I'm just glad there is this forum so atleast I could figure out was was wrong with me. I'm so scared of loosing everything. I had a perfect life and now I don't I can't believe it. The pgad has to be the worst symptom of all.
Hope everyone else is in a slightly better mental place than me today
Lily-Coral
X

Hi Lily-Coral,

I can understand your feelings of despair. There was a time I thought there was no chance of getting better but here I am doing great and I know other people who are better too. So keep your courage up and keep searching for answers until you find what works for you.

Violet

I just wanted to ask what medications are documented to have helped this condition?
x

I listed the ones I know of in the article I wrote which you can find at the following link:

http://www.pudendalhope.info/sites/defa ... ne2013.pdf

I compiled this list from talking to other women either personally or via the forum.

Violet

Hi,

I am dealing with this disorder since 2014. At the beginning it was awful but with time it calmed down. For several months I almost didn't have any symptoms and it came back this summer. It was still pretty bearable, I had bad flares but most of the time it was ok.

Last monday I got my wisdom teeth removed and three days later the PGAD came back and did not leave ONE second since. It's been 5 days without interuption and I'm freaking out. The sensasions are different than I used to have, I used to feel arousal sometimes on the clitoris and sometimes at the entrance of the vagina but right now it's like tinglings on the left side and arousal on that side also.

I am afraid that it will stay like this forever. It used to go away but this time it doesn't I don't understand what happenned. I'm in so much stress I failed my exam today as I could not concentrate. My life is a mess I can't stop crying since wednesday I'm miserable mentally and physically.

Also I have to say I think my PGAD comes from SSRI withdrawal as it happenned when I stoped one.

Hi Julie,

I think for anyone who has experienced PGAD there is always a certain amount of fear. I think the important thing now is to take some steps toward treatment and relieving symptoms so you feel like you are a little more in control.

You might find my article from a couple of years ago helpful for ideas on treatment options. (linked to a couple of posts up)

If you can find a provider who is close enough for you to see -- either a physician or PT on our list of providers, it might be worth it to at least get an evaluation even if you think it was caused by SSRI withdrawal, just in case there are other variables that could be contributing toward your symptoms. There are other medications besides SSRI's that can help the symptoms of PGAD so that might be something you want to consider too. In the meantime, maybe ice gel packs or ice balloons inserted vaginally will help calm things down a bit. Also try using over-the-counter extra strength vagisil. (Walmart brand works just as well and is cheaper).

Violet

Hello, I don't know if this is the right place to post this.
I started with pgad a month ago, 2 weeks in severe sitting pain - my nan is a nurse so got me on pregabalin asap, 10mg amitriptilyne aswell. I am 20 years old, work, own a home and engaged - I have found out I am pregnant. I didn't know as I carried on with monthly cycles I didn't know! Pain is controlled however meds not safe in pregnancy. Pgad through the roof, I go back to work in 2 weeks. Has anyone carried a baby with pn/pgad. I have no idea what to do, neither does the people around me so deverstaed this condition is pure evil.
Any advice welcomed so much
Lily x

Lily, probably one of the best natural remedies I can suggest would be ice or heat --- or alternating ice and heat, including ice balloons inserted vaginally. Unfortunately, you can't do that at work. I think it's possible the hormones associated with pregnancy could be exacerbating your PGAD so hopefully, once your hormones level out after pregnancy things will calm down for you. In the meantime, I don't know if some pelvic floor PT would help or if it would be allowed during pregnancy but I can't really see why not, and it might prove helpful. Might be worth it to check with your doctor and a PT to see if that would be an option.

Violet

Thanks Violet for your advice, I have booked in a pt session with someone called fiona mitchell who ruth jones recommended to me, I'm going on the 28th of this month so hopefully that will help!
Ice really is a life saver with these conditions however today has been particularly good for me , I used an accupresure matt I bought off the Internet this morning and put some st johns infused oil in a bath, really good for nerve pain apparently and worked well too so, might continue with these 2 home remedies considering I saw a little difference.
I hope one day to be cured, I'm obviously hoping not to have full blown pne but that's out of my hands!
Lily x