How Vulvodynia Is Diagnosed
This week, I’ll be featuring information on the chronic pain condition, vulvodynia, that affects millions of women worldwide. We have already talked about what is vulvodynia and the causes of vulvodynia. Today, I want to tell you how vulvodynia is diagnosed.
How Vulvodynia is Diagnosed
I can tell you from experience that it isn’t easy to get a diagnosis. Most doctors are clueless and don’t really understand this condition. Some don’t even know what it is. I have actually had a doctor laugh at me when I told him what I had. I couldn’t believe it. I think if his private area was in excruciating pain he would understand that it’s not a laughing matter. That’s just typical of the kind of care I have received…more on that in later posts.
Some women have to see countless doctors before they are told they have vulvodynia. Some may never be told at all. I was talking to friends of mine and many of them have either suffered with it and had no idea what it was or they had a family member have the symptoms but never a name for the actual pain. I was lucky that I was diagnosed quickly. It was actually within the first month. However, I was told point blank that I would “just have to learn to live with the pain”. It devastated me. I wanted to die because it was so bad and I felt like no one could help me.
Doctors first need to rule out any other possible causes for the pain like STDs, infections, skin conditions etc. I had countless swabs and cultures done and they all came back completely normal. So why was in so much pain then?
There’s something called the Q-tip test that a doctor can do to see if vulvodynia is the likely culprit. Basically, they take a q-tip and gently touch around the opening. The patient tells the doctor how severe the pain is. I nearly jumped off the table with this test. It felt like a needle being poked into me. It was just the lightest touch of a q-tip. That’s when my doctor was certain that I had vulvodynia. She told me that it usually lasts 2 to 5 years. Wrong. I am on year 5 now and still in pain.
According to a Harvard study, 60% of women consult at least three doctors in seeking a diagnosis and 40% of those who seek professional help remain undiagnosed after seeing three different doctors! The doctors really need to step up and help us women out. We are tired of suffering!
Read the rest of my vulvodynia posts.
Oh my gosh, this sounds so horrible and I am so sorry to hear that you suffer from it. It is so great that you are sharing your experiences with people. I had some strange medical issues going on last year (now resolved) and I found the most valuable info on blogs and message boards from real people. It’s a great way for people to know they are not alone, too. I hope you recover SOON!
~Jennie
That sounds so horrible! I hope it gets better for you soon. Maybe I should have been checked for that too. I had to go to about 20 drs before I was diagnosed with a severe form of interstitial cystitis. I had several telling me to go see a psychiatrist because the pain was all in my head (yeah right).
If it wasn’t for reading an article in a magazine about diseases drs most miss God only knows when I would have found a dr to figure it out. I brought it in and was tested for it. Now I can only hope for a cure after living with it for more than 14 years.
Isn’t it horrible that when people–not just doctors–don’t know about something or have had little to no experience with it, their tendency is to brush it off, laugh it off, or chalk the patient up to being “off”. It’s very sad that so many people are so unwilling to listen and understand. Just because you can’t see pain or do a blood test for it doesn’t mean it isn’t there. Like Fibromyalgia…how long has it taken (still taking!) for people to finally recognize that it’s a legitimate disease? It’s really sad and pathetic, and I’m sorry that you and many others have had and will have bad experiences with doctors. I hope that as time goes on and people like you spread the word, that more doctors will become more knowledgeable and understanding about all types of pain.
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