Hello, My name is Joan. I am a 54 year old woman that has endured severe vulvodynia for over one year. It has gotten to the point where my labia has fused, and now my clitoris is beginning to fuse.
I have seen 13 doctors in an effort for answers. Dermatologists, Gynecologist and Urologists. I usually reach a dead end and am sent on to someone else. I have had two biopsies of the tissue that only show chronic inflammation. I think I have tried every steroid cream on the market. This helps somewhat, but the pain is almost unbearable at times, It feels like someone is holding a match to my vulva.This has also affected my urethra, it sometimes bleeds. Sitting takes great courage, I only sit if I need to get in the car. Wearing underwear is reserved for leaving the house only. I am isolated and appropriately depressed. I have not been able to have any kind of sexual relations with my husband because of the clitoral involvement. Fortunately he understands as one look at my tissue makes him
Because of the NVA I now know there are options I have not tried. I have an appointment from the list of names given to me. I pray that there is something that can give me my life back. By the way I am using the computer from my bed lying on my side. Ice packs are my best friend.
Sincerely,
Joan B.
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Joan, I too suffer from vulvodynia. I have taken steroid cream, and multiple other medications to help with the pain and inflammation. I know how it can effect your quality of life and turn things upside down...I don't know if you're a christian, but for me, prayer helps a lot. I have since found a wonderful doctor (after seeing so many) who is very patient and has a great bedside manner. He has helped me a lot. I have also found help through NVA.org. If you need to chat, you can respond via my post, I know how much it helps to talk to someone who understands what you are going through. God Bless! Iris
September 24, 2008 - 2:17pmThis Comment
Hi Joan:
I am also a Christian woman like you. I have not been diagnosed with V. My doctor thinks I have an recurrent Yeast infection, but I know that is not what I have because none of the treatment have worked. I pray everyday that God will heal me. It is so hard when your are married to have this problem. I don't know what else to do. I have not found a doctor that can help me. Let me know what has worked for you
God Bless
January 15, 2010 - 7:49pmMargie
This Comment
Hi Margie: I too was diagnosed initially with a yeast infection by my previous gynecologist. After being sent home twice by him, I finally visited the ER because I just could not handle the pain and they thought I was raped...it was a horrible time in my life. And I understand how you feel and your considerations for your spouse, and how it effects you both...it is essential to have a loving and understanding spouse. The Lord sure has blessed me and my spouse with patience and consideration for each other each time I experience pain associated with Vulvodynia......Have you considered seeing a vulvar specialist specialist? I know of a terrific one here in TX, and I have no problem helping you find one if TX is too far. I know everyone responds to treatment differently (and please seek medical attention before you take on any of the following suggestions) and research all treatments before pursuing them yourself. The following are some suggestions that worked for me (not a cure, the just assisted in relief): If you have some estrace, you can place that in the area where you have inflammation (it strengthens the skin in that area). My doctor had given me estrace, a steroid and lidocaine to help with pain. Also you can also use frozen peas to help soothe the area. Only wear white cotton panties if you have to wear panties and try to avoid foods high in oxalate which produce sharp-edged crystals in the urine that irritate the covering of the vular vestibule. Omega Fatty acids, Zinc and magnesium supplements helped with reducing inflammation since they play a crucial role in the prostaglandin pathway. The prostaglandin pathway releases eicosinoids (local hormones) thay have various roles in inflammation......Also, I have had physical therapy and kegel exercises which really helped strengthen my pelvic floor muscles (PFMs). Weakened (PFMs) contribute to some of the pain associated with Vulvodynia.
NVA is a wonderful organization that can also help you with locating a great doctor. I hope this information was helpful may you find comfort in the following scripture: Psalms 31:9, 147:3 46:1, 34:4. God Bless!
January 16, 2010 - 3:59pmThis Comment