Health Organization for Pudendal Education

Shirley if you read back through the thread there are quite a few different drugs mentioned but there can be quite a bit of trial and error involved in figuring out which ones work for you. I found an SSRI to be the most helpful in dampening PGAD symptoms -- not sure I would have survived without it.

Violet

I started 90mg of Cymbalta 3 weeks ago. I think it's helping some with the pain, although I still get a couple of days here & there. I tapered off the Lyrica completely about the same time. My doc wanted me to start Altace to protect my kidneys from the diabetic meds & diabetes. I was so scared to try it because of the potential drug interactions with some of my other meds. I felt strange for a couple of days, headachey & a bit shaky, but so far so good.

My arousal has continued to be at a manageable level most days. Perhaps the increased dosage of Cymbalta is helping with that. Dr G prescribed a topical cream for the pain, containing lidocaine & gabapentin. I've resisted using it so far. I may have to give it a try though, since some days the pain is bothersome. I can't use it beforehand if I want to have sex, since the medications in it can affect my hubby, making him numb. Has anyone else tried a similar cream? I had to take the prescription to the pharmacist & they had to order the ingredients to have it made. If tried, was it helpful & easy to use?

DES,
I use a cream compound that has multiple ingredients Gabapentin, lidocaine, Baclfen, etc. It says to use vaginally 4 times a day and they gave me two tubes one a little smaller for my purse but can also fit in my pocket while at work. You just put some on your finger and insert into the vagina. Not difficult just trying to remember. I do not have PGAD so not sure how it may help with that but it helped my PN (I am post TG surgery). Actually now I am trying to get off it since I am doing better. I did feel some side effects like when I started the pill form of gabapentin but they were slight in comparison to the pills. Hope it helos you.
Janet

DES, I used an over-the-counter (20% benzocaine) numbing cream that worked well for mild pain or PGAD and was very easy to use. Can't say it helped much when symptoms really bad though.

Violet

Thanks ladies. I appreciate your input. My PGAD has been manageable, but with my dental appointment looming in the AM, I'm noticing today it's spiked again. I'm convinced mine's closely tied in with my stress levels. The pain's been bearable too, mostly an itchy-stinging sensation around the top of the clitoris..

I go back to see Dr G in a month's time. While I don't want to have to use the cream because of pain, it's there if I need it and maybe I'll be able to give him some feedback as to how it's working for me. *sigh* I was so encouraged that my arousal had dampened down to manageable levels, and was still holding out hope it just might 'disappear' like it did the first two times I had it, but I guess not.

Just an update. Hopefully it helps some folks. I am 4 months out of Left Sided Transgluteal surgery. Symptoms were much worse after surgery up until about two weeks ago. My symptoms are now at least 50% better and seem to be continuing to get better as times goes by.

Also I use suppositories which contain 5mg valium, 4 mg baclofen, and 2% lidocaine which I get from a formulary pharmacy. Suppositories are taken rectally as I am a male. I also use a Lidoderm Lidocaine patch which I place over the pubic bone area. I also take Tramadol in the morning which I'm not so sure I need anymore.

I am not sure which one of these treatments (surgery, suppositories, lidocaine patches, tramadol) are what's helped me but I am definitely feeling that the PGAD symptoms have gone away substantially. I've had the symptoms for 7 years and they really wrecked my career. I'm now ready to try to get back to working.

I didn't try the patches or the suppositories pre-surgery so they might be the cause of the relief. I hope this information can help any other PGAD patients. Since I've been suffering for so long, and although I'm not 100% cured, feeling so much better, I do sympathize deeply with anyone with this condition.

That is wonderful news Happs! A 50% reduction in PGAD symptoms allows one to do so many more things. Hope that your progress continues as you fully heal from the surgery.
Can you share who did your surgery, and which other specialists you saw that you would recommend?

My surgeon was Dr Hibner at St Joseph's hospital in Phoenix. I also spoke by phone to Dr Anshoo there who got me started on the suppositories.

I've also seen Dr Weiss in San Francisco. Those are the doctors that have been most knowledgeable and helpful. I spoke with Dr Irwin Goldstein by phone and he also seems very knowledgeable.

I forgot to take my Tramdol in the morning yesterday and had a bit of an increase in symptoms. So that is definitely still needed. I tried not wearing the lidoderm patches today and felt a slight increase in symptoms. Not sure if I want to go without the suppositories as they really seemed to be a major factor in relieving symptoms when I first started using them. It seems the relief comes from the combination of everything.

I've tried suppositories before, but they were only the valium. The mixture of baclofen/lidocaine/valium seems to work much better. I'm not going to get my hopes up too high that I'll totally heal, but as you said, 50% is significant and has allowed me to do much more.

Good luck and all the best.

Happs, this is really great news that you are doing this well this early after surgery. It took longer than that for my symptoms to die down so I think you have good reason to hope that you will still see significant improvements. Please keep us posted on your progress long-term because it's posts like yours that would have kept me going in those dark days before surgery when I thought I was going to have to live with PGAD the rest of my life.

Best,

Violet

Happs -I agree with Violet, thank you so much for posting. I am in the darkest of times and your post made me feel that there might be a glimmer of hope. I have been meaning to write to you to tell you thanks. I have had PGAD for 5 years and am at the very beginning of seeing Doctors, thank you again for sharing. I wish you all the best.

DES - I am also in Ontario and am waiting to see Dr Gordon. I can absolutely see the correlation with stress as well -why is that?? My PGAD never goes away -but it becomes even more unbearable when I am in a stressful situation. It all started when I was in a very stressful time in my life and since then it has never gone away. I have no pain. Have you tried any other treatments? Did Dr Gordon prescribe any of the meds you are taking?

Hope everyone is well.

Jenny