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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I started with lichen schlerosis after wearing jeans with stretch fabric. I had no idea it would cause skin to fuse over my clitoris. After burning and stinging sensations, my gynecologist diagnosed lichen schlerosis and biopsied the white patches on my labia. Thankfully, it was NOT cancer and she prescribed Clobetasol ointment. I was only using it when I had dryness (post menapause) or any burning sensation. Now I am experiencing skin around the external urethra fusing. I have another appt with my GYN this week, which is a good thing because I just experienced my urine coming out a little at a time today. I had NEVER heard of this before.
February 10, 2015 - 5:35pmThis Comment
its sounds like you have lichen sclerosis. you wouldnt get fusion of the labia with vulvodynia
January 14, 2015 - 6:40pmThis Comment
I had horrible pain which only went away when I made sure there was no friction of the area (no exercising), and quit all topical steroids. The steroids have been irritating my skin (hydrocortisone 3 times per day for 3 months). See the ITSAN (topical steroid addiction website). And I am using a probiotic which seems to help.
May 13, 2014 - 7:21amThis Comment
I've been suffering with V. for the past 4 years (exactly how long I've been married). Before this, I never had a problem. There have been breaks where I feel okay again, but they are few and far between. By the sounds of it, mine is a more mild case-I only notice it when my husband and I have sex. The odd time I can feel the shooting pains when I'm sitting working at my desk.
In everything I've read online (I'm all about the natural approach) I've come to realize that it most likely stems from Candida. Most people don't realize that Candida affects your hormones which can mess up your whole body and how it works. I have many of the symptoms of Candida already and this is just one more. I purchased the ThreeLac system and the oxygen elements plus and am going to do a 2 month candida cleanse and follow a candida diet. It's going to be tough but the results which I'm praying for should be worth it.
It's such a frustrating thing to have never had a normal sex life with your husband and wanting to start a family. How can you even plan to do that when you've never had a pain-free intimate experience with your spouse. This is not a well known condition, but I first learned of the name on Dr. Oz' show. Nobody should have to suffer this kind of pain.
October 26, 2010 - 10:59pmThis Comment
I am so astonished how doctors dissmay your symptoms as something so silly. I have been to several doctors who have been of no help. My pain all started after giving birth by 10 days. I thought it was normal feeling such chronic pain in the whole pubic area considering it was my first birth. It has been 2 months now and the pain is awful. I usually get it when I wake up and it lasts for about 30-60 minutes. It is unbearable. I hate waking up because that is when the pain is in its peak, and the fact that have to wake up several times a night to nurse my newborn you can imagine how many times I wake up to look forward to this chronic pain, not to mention my demanding baby. Can anyone help me or give me suggestions, could this pain have started because of giving birth, could my pelvis be out of place? I had an epideral so as soon as I got hope from the hospital I was doing all sorts of house work excercise etc. because I was still kind of numb. Please help me!!! I am desperate for help as my whole nights are all tears and stress, I can't even give my baby girl the affection and love I should because of the pain.
Thanks for reading.
Safaa.
January 29, 2010 - 7:28amThis Comment
Joan:
January 10, 2010 - 11:49amI emphatize with you and all women with vulvodynia. It is not common knowledge but toxic chemicals could well play a part in Vulvodynia. McGill University, in Canada has actually advised women to NOT USE fabric softeners when washing underwear due to the toxic chemicals they contain. Presumably the rationale is that the chemicals could cause chemical allergy or chemical burn to the most sensitive skin in the body. Sounds logical to me.
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Joan, I am a 56 year old woman and have had vulvodynia since I was 45 yrs old. It took me 10 months to be diagnosed properly. My pain was exactly what you described and I had urinary frequency as well. What I tried - and it has worked for me is Elavil (an antidepressant taken in low doses). There is some type of blocker in it that cuts the pain message from getting to the brain. I started at 25 mg once a day (taken before bedtime) because it makes you sleepy. Within 2 weeks of beginning the drug the pain started to lessen and eventually dissipated. I am pain free today, However in the last 2 years my inner labia has disappeared and my clitoris has fused - this is a condition called lichen sclerosis. You may want to research this as well. I realize that many women don't wish to take drugs but for me it has been a godsend and has meant the difference between functioning normally or not at all. However,since I've been on Elavil for 10 years, I think that my body has gotten used to the dosage so I've had to up the dosage to 35 mg per day and now am at 45 mg per day. My dermatologist who treats this condition has told me that the highest dose she's encountered with one of her patients is 100 mg per day. I have thought of trying something else and some of the conversations on hormones are interesting but so far the Elavil is working. Re: finding a doctor to treat you - if you join the NVA they will provide you with a list of doctors in your area (or area closest to you) who treat vulvodynia and a support group. If unable to attend a group you can probably arrange to talk to someone by phone or by email. Each person is different and what works for one may not work for the other - just keep trying till you find a solution that works for you. Hope that helps!
November 20, 2008 - 7:04pmThis Comment
Hi Joan,
January 19, 2010 - 9:42pmThis sounds like an ordeal and difficult to live with. Is it possible that eating too many foods or beverages containing oxalates such as mixed nuts are causing vulvodynia as well as more frequent outbreaks for those suffering from herpes.
http://www.branwen.com/rowan/oxalate.htm
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I suffered from Vulvodynia the worst last year. I had it so bad, I had no other choice but to devote my life to it. I know what you mean about the icepacks... I actually walked around with them in my underwear all the time, but it really wasn't enough.
September 25, 2008 - 2:26pmI tracked my symptoms: time of day, temp, everything and was eventually able to determine it was a hormonal imbalance. I tend towards natural cures, so after much trial and error I was able to re-balance my body's ability to make hormones using high quality vitamins and other natural approaches. But in your severe case if you're not opposed to HRT, you could have your hormones checked and look into this kind of relief right away.
I was only 25 and my lack of hormones sent me into a state of menopause. Once I got my periods back and my hormones better adjusted, my pain went away 95%. I am writing a blog/story about this here too for the full story. My friend who had V much longer than I, also got relief from types of HRT. It kills me to see people go through the torture I had. I recently joined a team: http://www.curetogether.com/Vulvodynia/ that specifically addresses this and other chronic conditions. It is designed to open up world-wide research and help people discover treatments faster. I hope you can find additional treatment options and reviews there to help you asap. My heart goes out to you, many prayers.
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Joan,
I am so sorry you are going through this! After reading your story, I wanted to learn more about vulvodynia and found this information (I am sure you already know this; it is a basic brochure):
http://www.acog.org/publications/patient_education/bp127.cfm
After reading the above info, I found that there are some other options that you did not mention in your post, and I was wondering if you've tried them or have considered them:
- avoiding foods containing oxalates
- therapy (if you/your husband are having difficulty with chronic pain and lack-of intercourse)
- surgery
take care,
September 25, 2008 - 2:06pmAlison B
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