Re: Vulvodynia and Vulvovaginal Lichen Planus

[Guest guest]

lichdesign (I wish I knew your name) =)

I wanted to respond to you because I identified with you so much...I

am only 26 and have the same diagnoses. It took me a long time to get

a proper diagnosis and treatment, I started having symptoms

technically when I was about 22, but always had pain with inserting

tampons from the very beginning. I couldn't use clobetasol or

lidocaine either, they both totally burned me and didn't help at all.

You need to get into a good dr. for regular monitoring, esp. because

LP can be very aggressive. I am seen at least every 8 weeks,

sometimes every 4 weeks when my condition is more active. The

combination that finally worked for me was topical hormones (estrace)

to prevent further architecture changes, emu oil for lubrication and

inflammation, and lots of pelvic floor PT and dilators to fix the

muscular and nerve issues that developed and caused pain during sex.

I was using an inserted cream of hydrocortisone and clindamycin to

reduce vaginal inflammation but can't use that right now.

My husband and I can have sex now mostly without pain (it's much

better when I'm in the mood - still working on that!). And I'm

pregnant with our first child! So there is hope. And there are good

guys out there. My hubby knew about my issues when we got married and

he learned how to be gentle, use lots of lubricant, and work with me.

If someone really loves you, they won't care. Sex is important, but

it's not everything (I can say this now, but when I was in your

place, first diagnosed, I felt pretty hopeless, so I understand).

There was a point where my disorder was very poorly controlled and we

literally had no sex for a year (and the whole year before that was

hit or miss, very infrequent and painful). It helped taking him to

the doctor and PT to learn that it wasn't his fault and to learn

things he could do to help, because men just want to fix things.

You are in the right place...you will learn SO much in these groups.

The other group you need to join right away is the Lichen Sclerosis

group - it's a disorder similar to LP and they have SO many amazing

files and advice that is more specific to this diagnosis. Both groups

are great and I have been on both for over a year, I have learned WAY

more here than from any doctor and have been able to go to the doctor

educated and armed with information that I need to get proper

treatment. My doctor never even mentioned estrace, but this group

did. And it's the thing that worked the best for me! You just need to

do some experimenting...many people can tolerate a lower level

steroid if the clobetasol is too strong (ie betamethasone,

triamcinolone...there are many to try).

You were talking about self-worth...I felt like so much less of a

woman, because I didn't even have all my girl parts anymore! And I

can't orgasm because of the tenderness and sensitivity, which used to

really depress me. But finding people who love you and validate you

will help. My husband is great at letting me know that he doesn't

care how I look and that I still satisfy him. And the ladies on here

are so amazing. I don't know what I would have done without the

support. The best thing for me was this group and giving myself time

to experiment and find the treatments that helped, because once I

found what helped, I felt physically better, so I felt better in

every way. Please email me off group if you want to talk more...us

young'uns have to stick together! =)

Melinda