Growing up, as you already know, I had no treatment provided to me for my vulvodynia. I really doubt that at that time it was even recognized in the health field as a "real medical problem". Well times have changed and at the young age of 27, I am now being treated. I have already traveled a long road of "trials and failers" just in the past year that I was diagnosed. Maybe my treatment list would give another lady out there some ideas that may work for her.
Treatment For Vulvar Vestibulitis/Vulvodynia As Follows:
I started out on Estrogen Cream to thicken the skin. Did not help.
Then tried Lidocaine Cream (Low Level) to numb the pain. Did not help.
Then moved on to Lidocaine/Estradiol Cream, this cream actually was a compound cream and I think it did help. (It was either the cream or never having sex that took away the pain of sex ;) ) I have a small amount of vestibule pain, but not nearly as much.
Ice pack. Did not help and brrrrr...
Gene's Vitamin E lotion to soothe the pain. Did not help. (If interested in this, only $8 in Sam's Club)
Crisco, yep you read that right, Crisco. Did not help. This will form a thick barrier to help with irritation for some ladies.
Benadryl for the uncontrolled itch. Kinda helps by putting me to sleep. I have the cream and the pill. The pill knocks me out and the cream doesn't help that much.
Vibration Therapy. Yea you guessed it, therapy with a vibrator. I could sit there for hours doing this and all it does is makes me numb, a painful numb. Like everything down below is going crazy tingling numb and not a good tingle!! It is supposed to help fight back those nerve responses that are from my neuropathic pain. Did not help.
Deparon pill. Did not help. Made me crave sugar, 24/7.
Propanolol pill. This medicine does help to slow down my anxiety (heart rate) so hopefully it is helping to loosen my pelvic muscles in the process.
Heat from the hair dyer. Yes, I'm willing to try anything, which this does help some times.
My doctors have also put me on Ortho-Tricyclen Lo and I never take the blue pills. I try to skip all cycles due to the fact that they make life hell, I cannot insert a tampon and pads cling to your skin. All a bad combination for vestibultis.
Slippery Stuff lube. Did not work. Made me feel so weird inside but it is a water-based lubricant if anyone is interested.
Physical Therapy. It is a working process so I have high hopes for a positive outcome and my therapist is awesome!! Emily at CAWH in Raleigh, NC; she is amazing!!
I am now supposed to be on Lyrica but it's so expensive. I will update on this on a later date.
Just so we all know, my VVS has cleared up or so it seems. I do still have a little soreness but nothing like before. The doctors all agree that my skin looks very healthy, so that is wonderful! I still have the horrible itch (vulvodynia) that never disappears but my doctors believe that it is neuropathy pain that was brought on from the catheterization at a young age.
I still have a list of things I am still supposed to be using. A mini shower, a dilator kit, Mind and Body Workbook, medicine ball and I am sure there are a few more things that I have already forgotten.
So with all this being said, I have had to sit down today and come to terms with how much this is costing me and my family. My husband is already stressed about how we are going to keep affording all you see above, my sons schooling, food, electric, mortgage, etc. After tallying everything up, I fork out over $210 a month on my treatment. To some that may not be a lot, to us it's a fortune. I now have to decide which road to take. The road to healing, yet feeling like a test rat and maybe never coming out of this pain free or the road to dealing with it without treatment. I have been on this road of just dealing with it all my life so really is it going to change anything for me. I still suffer, I have zero improvement with the itch and we are broke. So my next decision will be to drop the curtains or keep the show going...
