It’s indescribable to explain the pain a person feels when urinating with micro-tears on their vestibule. It literally brings a person to their knees in pain, followed by tears from the pain and the reality that this is life with vestibulitis.
There is no way to explain the pain of feeling your vaginal walls rubbing against each other as you walk because they are so inflamed and swollen. This is life with vulvodynia.
It’s unbearable feeling as though you are on fire every time you go pee.
It’s terrifying to even think of being aroused knowing that it will set off a series muscle spasms and pain.
It’s painful to sit too long when your pelvic muscles are in spasm that it feels as though you’re being stabbed.
It’s impossible to describe how scary and stressful it is to get a pelvic exam to try and help deal with this condition, knowing that it will result in intense pain, swelling, and iritation in the week to come.
Nearly every day I come home with an incessant itch that can’t be scratched, a pain in my buttocks from the spasms in my pelvis, and an acceptance that all of this is just normal.
This is life with vulvodynia 😢
I’m just going to come out and say it – I have Vulvodynia and it’s embarrassing to say to the world. It’s harder for me to stay silent or refer to it as a vague chronic pain condition, I need to be able to feel a purpose in the pain and for me that is found in bringing awareness and helping others.
I was diagnosed in 2015, but I’ve been having chronic symptoms since 2011 and they hit their worst point in 2013. I say chronic symptoms since 2011, because I actually developed my first symptoms while pregnant back in 1997. For years, I just dealt with the symptoms because they didn’t impact my life dramatically. In 2011, I began to notice more symptoms, but I didn’t know what was normal for a woman’s body and I wasn’t surrounded by women I could talk to about them, so I just wrote them off as normal and to getting older. Then 2013 hit and they really began to impact my life and my marriage. Again, I wrote them off as normal until one day I was brought to my knees with pain and swelling. I finally asked some girlfriends if they ever experienced what I did and they looked at me shocked and said “no.” That is when I knew it was time to start figuring things out for myself. Thus began a two year journey of doctors appointment, blood work, and urinalysis to be told repeatedly that nothing was wrong.
“[Women with vulvodynia] suffer at home, in silence, and they don’t understand that the pain that they’re experiencing is not normal.” NIH Funded scientist.
That statement is exactly how I feel and many other women with this condition. It’s also the very reason I am coming out. People don’t like to talk about pain, they certainly don’t want to hear about another persons pain, and it’s further amplified when it involves a woman’s vulva (aka -vagina). A woman’s vagina is still thought of as purely sexual and not to be spoken of. In reality, a very small portion of it is used for sex. Our bladder output takes place through our vulva, menstration, and birth are all much larger functions involving the vagina than sex. To discuss a man’s prostate is perfecty acceptable, to joke about a man’s penis or testicals are all culturally okay, but to discuss a woman’s vagina is still taboo. This is why we suffer in silence.
I have Vulvodynia
Many don’t know that I deal with a chronic pain condition. I don’t let it stop me and it’s invisible. I don’t speak of it often because the actual condition that causes the pain is socially taboo. Someday I will work up the courage to speak about it and say to hell with social taboo’s, but for today I will let it remain unnamed.
Simply put – chronic pain sucks!
Most days my pain is at a 1 or 2. But when I’m in a flare the pain can range from a 5-8 and it’s constant, it’s distracting, and there is nothing the doctors can prescribe to help it.
I visited the doctor today. The nurse was perplexed, hemming and hawing, scrunching her eyes, and oblivious to how her body language spoke doubt and disbelief to me. The physicans assistant that saw me was much more controlled in her body language and her tone was caring, but I still walked out having heard “everything appears normal, there are no visible signs to indicate a flare.”
I walked to my car discouraged. I sat in my car and cried silent and alone. I came home to share with my husband that even though I say I’m in pain there is no signs to justify it – praying to God that Jeremy believes me and doesn’t think I’m faking it (he doesn’t).
Basically, I just feel alone, frustrated, and discouraged. How can I treat a condition that has no known cause and can flare but the doctors can’t see it.
Just remember everyone has a battle they are fighting, sometimes it may not be seen or spoke of, but it’s there lingering beneath the surface. Be kind, be joyful, show compassion, show love.