Vulvodynia

[Rehab45]

Hi

Does anyone have pain in vestibule area before urine stream starts?

[Rehab45]

Also I am on gabepentin 1300mg a day that doesn't seem to be working for me. What meds are you all on and do muscle relaxants work?

[PrisonMike201 in reply to Rehab45]

I have had this issue on and off since I’ve been diagnosed. My doctor just switched my treatment plan yesterday actually since it has gotten worse. She recommended I up my Baclofen to 10 mg by mouth and 10 mg vaginally nightly. She also is having me try a compound cream that consists of amitriptyline, gabepentin, and baclofen. I am hoping this will help. In the meantime, lidocaine seems to help!

[Rehab45 in reply to PrisonMike201]

Hi

I have heard baclofen works well for many people. How are you finding the compound cream that you apply direct? I am thinking of giving this a try. I am allergic to lidocaine, it stings all day long and provides me with no relief. It actually makes it worse. I have had vestibular vulvodynia for 1 year now and it's really taking a toll on my life. Coming off of the amitriptyline makes me feel sick every day and I'm not sure that the gabepentin I am taking is doing anything as I don't know what my pain would be like without. My dream is to get off of the oral medications asap. I am not one for popping pills... its hard to know what to do isn't it? x

[PrisonMike201 in reply to Rehab45]

Hey!

Sorry it took so long for me to reply. I work for a college as an academic advisor and it’s our busy season right now.

I really like the compound cream. I used it a few years ago and I found external pain relief. Some of the drawbacks are that it’s a bit pricey ($60) and it only last about 4 weeks. It can also be challenging for sex as well since it’s not something you want to apply beforehand so it remains external only but at the same time it helps with some of the discomfort caused by sex. I’m going to ask my doctor in a couple weeks when i go back.

I don’t enjoy taking the amitriptyline by mouth because of the side effects. I don’t mind the baclofen by mouth though. It’s a low dose so I don’t really have any side effects from that.

Yes it very much is difficult to know what to do. I feel like different things work for different people. Hope you’re feeling better!