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Hello @francesmharris123 and welcome to Mayo Clinic Connect. I am sorry to hear you are going through this. It is great you've reached out to connect with others who may understand what you are going through.
I was able to find an existing discussion on this topic so you will notice I have moved your post here: https://connect.mayoclinic.org/discussion/vulvodynia/
Members such as @gardeningjunkie @gingerly @lizziemnz and @ronnie3716 have all previously shared in this discussion and may be able to come back to provide you with some needed support.
In the meantime, I'd like to share the following resource that may be of interest.
- Volvodynia: Diagnosis and Treatment: https://www.mayoclinic.org/diseases-conditions/vulvodynia/diagnosis-treatment/drc-20353427
Have you sought a second opinion for care, by chance?
Replies to "Hello @francesmharris123 and welcome to Mayo Clinic Connect. I am sorry to hear you are going..."
I have been to 10 doctors and had 2 procedures which did not work. There was only a 40% chance they would work. My GYN is sending me to a pain specialists. At this point it appears it is not going away so now he is taking a different approach.
I have been to at least 8 doctors and my dermatologist treats Vulvodynia and she gave me gabapentin but probably not a high enough dose. Recently I started taking lyrica which is similar and it seems to work a little. The doctor is being careful not to raise the dose too fast because I get dizzy and my head gets numb.
I have been to at least 9 to 10 doctors. The pain is there all the time. The pain gets worse as the day progresses. When I first wake up the pain is at a low level. When I start doing normal things the pain gets worse especially when I sit. Once it starts it gets worse. I wish I could sleep most of the time. By this time of the night the
Burning is the worst. It is 11:00 pm so thank goodness I will fall asleep soon. I have had Botox injections, Pudendal nerve Cyroablation, and many medications. I am taking 150mg of Lyrica/day. It helps a little. I can’t believe no one knows how to stop the pain from Vulvodynia. I don’t look forward to anything any more. I wish I could stay asleep until I die. I have been very healthy all my life until I turned 68 four years ago.
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For women who have vulvodynia, you might see a dermatologist along with a gynaecologist. Really this is a skin condition. Ask about lichen sclerosis or other types of skin problems. Not every problem in the vulva is a gynecological one.
I have used Lyrica (pregabalin) maximum dose 300 mg, amitriptyline 30 mg per day and Tara-clobetsol ointment twice weekly for 2 weeks then nothing for a week and resume twice weekly etc. Be careful of cream formulations as they don’t stay on as long and can have reactions based on the formulation of the cream.