Vestibulodynia?

[oescharao]

Hello to my fellow ladies,

I've been grappling with recently diagnosed vestibulodynia this past year. I have forever had issues with annual exams and sex, but it was a long time before an obgyn finally pointed me in the direction of a pelvic floor specialist.

Has any one experienced vestibulodynia? Or some other kind of vulvar pain? I'm beginning to wonder if there's any linkage to Sjogren's.

Additionally, has anyone considered or had the sugery? My doctor is beginning to consider it.

Thank in advance and hope everyone is well!

[irish]

I would not be surprised if Sjogrens is involved because of the neuro involvement that occurs with most of us. I would certainly investigate this fully before having surgery because pain may not be helped and heave forbid, it might even be worse if nerves are rearranged. Have you taken gabapentin or any of these meds for nerve pain? Irish

[Kathy57]

Sjogrens contributes to dryness and yeast infections which can be very uncomfortable.   Premarin cream has helped me quite a bit. 

I wouldn't doubt if your symptoms were Sjogrens related.  I wish I had more advice for you but I don't.  Sjogrens is just a pain all the way around!  I hope you can find some relief.

Kathy

[oescharao]

Yea it would make sense if Sjogrens was related for all of those reasons. Really going to push for my rheumy and pelvic floor specialist to chat next visit.

I'll look into the Premarin cream! Thank you.
Specialist is going to start me on a topical compound of amitriptyline and gabapentin next. Heard of any particularly negative side effects with respect to gaba? My mom is all worried about it for some reason.

Thanks,
- Eschara

[irish]

Gabapentin usually helps people with the neuropathy issues. A lot of people take amitriptyline and gabapentin at the same time. Helps with nerve pain and sleep.

Gabapentin is taken by a lot of people. The therapeutic dosage has a wide range and the goal is to get the best relief at the lowest dose possible. Most people do well on it. There are some who will have some side effects and have to quite but that is not unusual with people with chronic illness. We take so many needs that eventually something is going to give us a problem and we have to stop the med and replace with another one.

The other issue is to be aware that one can get sedated and usually it is worse when one first starts and our body needs a while to adjust. If after a certain period of time you still feel too drugged, off balance, sleepy, (you will know it is too much for you) you ight have to check in with the doc and have your dosage lowered. WE are all different on how our body metabolized medication. So clad you have a doc who is trying to make life better for you. When pain is less and we sleep better life seems better. Good luck. irish

[bluegardenia]

i have vulvodinia, better ,i had it for years. after some time with terrible pain i finally found a doctor who cured me. i made tens, i use a cream with a very little dose of estrogens and testosterone and if i have an attack(that anyway is no more like those i had in the past) i make tens and itake a fantastic medicine, palmitoylethanolamide that inhibit the release of pro inflammatory mediating componds from mast cells. google it. i could not seat,walk, everything was painful, now im almost free from that.

[oescharao]

SO so glad you are feeling better! No one should have to suffer with this.
I will have to look into palmitoylethanolamide as well, thank you for sharing <3