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
I came home early from church today high with social insecurities. I know that the insecurities are unfounded or at least have a reasonable explanation – I can define this myself, I’m just struggling to believe it.
I got in my car and all the negativity smashed into me — what if I’m not right, what if they do dislike me? Maybe I did something wrong and instead of saying something, I’m being shutout. Will I ever be healed? Can I be healed on this earth, if I don’t believe I can? God can do it, and I believe He can for others, but what if I’ve lost all hope that I’ll be healed in this lifetime, can He still heal me? Let me take the pain away, let me create physical pain in myself to make the emotional pain go away. I’m not good enough, I’m not strong enough, what a loser….
BAM – slapped in the face by the reality that I walk daily feeling like I’m making good progress and then hit with the reality that I still have a ways to go. I know this doesn’t negate the progress I have made, but it feels like it.
And then Believe by All Things New came on and I hear these lyrics:
YOU SAY THAT I AM NEW, BUT I JUST FEEL OLD
IF YOU’RE ALIVE IN MY HEART, WHY DOES IT BEAT THIS COLD
WHEN THE SHAME’S SO REAL, AND MY FAITH IS A GHOST
WHEN THE SUN WON’T RISE, AND I’M ALL ALONE
HELP ME BELIEVE I’M A NEW CREATION
HELP ME BELIEVE THAT I’M SOMETHING MORE
THAN THE PAST THAT I’VE BEEN CARRYING
HELP ME TO KNOW THAT I AM YOURS
I NEED TO HEAR YOUR VOICE SPEAK LOUDER
THAN THESE LIES THAT CALL MY NAME
‘CAUSE I WISH THAT I WAS STRONG, BUT I’M SO WEAK
HELP ME BELIEVE
Yes Lord, help me believe that in my weakness you are there, that you are enough. Let me hear your voice speaker louder than the lies that call my name.
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.
I’ve been thinking a lot about the Why’s (see previous post) and one conclusion I have come to is that I feel this need to be perfect. Not perfect in everything I do, but perfect in my relationship with God. I’ve come to accept that I’m not going to be perfect before the eyes of my husband and certainly not my daughter, but I still feel this need to be perfect before God. How could He possibly love somebody that is such a failure? All the time she says she’s gonna do things, but then she doesn’t..what a liar. Doesn’t she care? Doesn’t she realize what I’ve done? How can she not care enough? It’s funny really, I can accept the fact that I’m not perfect to Jeremy. I’ve accepted the fact that he loves me regardless. And yet, he is mere man. Why can I not accept this same love, from God my Father? I still don’t fully understand why Jeremy loves me, but I have come to accept the fact that he does (even with this messed up head of mine.)
A passage from this book I am reading, Redeeming Love, reminds me of my current struggle:
“She writhed inside to escape the feeling, but it was there nonetheless, growing with the light touch of his hand on her shoulder, with every soft word he spoke. She was sure if she put her hands against her heart, her palms would come away covered with her own blood. Was that what this man wanted? For her to bleed for him?”
I can relate to this passage, but in my case the man is God, not my husband. Each time I seek God on this issue, I get this pit in my stomach, at times so strong, I could vomit. Something tells me I should explore this pit, that God will be there with me to see me through the mess that is within, and yet, I could vomit just to think about the exploration. It terrifies me, the thought alone. What if God decided to leave during it, what if I start to explore this scary, dark, deep pit and I discover some awful secret? What if I discover that there is something in my past, so truly shameful, that I could never move on from it? What if?
I know…in my heart that none of those “what if’s” are true. I know that God would never leave me or forsake me. I know that nothing is to big or shameful or awful, that my God can not conquer- has not conquered. I know that God would not lead me into the fiery furnace and then leave me. He is my God and yet I can’t seem to put my trust in Him. Which brings me back to my original point, being imperfect as a daughter of God. I love Him, yet I can’t seem to release myself fully into His loving care. I am imperfect and this is a stumbling block for me.
I keep thinking to myself, “Why do I feel this way? Why don’t I feel loveable?” and to be honest, I can’t really come up with a reason, not in my understanding at least.
I grew up in a loving environment and felt loved by most around me. My parents loved me and showed it regularly. My sister, well she was busy with her own life. I believe she loves me now, but I don’t know that she loved me then. None the less, I don’t believe that her lack of transparent love as a teenager is what has resulted in my current state. All this brings me to my current state of “why?” I just don’t know, I want to know, but I don’t know where to look.
Then I come to my other “why?” “Why does it matter?” Why does it matter why I feel the way I do, isn’t it more important where God can bring me than where He’s bringing me from? I would like to believe this, I really do but something inside me holds me back. I keep thinking that if I don’t know the why and I move on, then the feelings will eventually come back. But will they? Only time will tell.
I am somewhat shocked at myself to be honest. I’ve known I should start journaling or I suppose, blog, for quite some time, but I’ve delayed. I fear. I fear the unknown hurts that I might uncover, I fear what I might become if I actually love myself, I fear that I may never find the love I am seeking, I fear that I will tumble into a downward spiral of self-pity and depression, I fear what others will think. I fear rejection.
I tend not to share these fears with many people, because they might reject me, and that is what I fear the most. I just want to be liked. I want it to be easy. I don’t want to be normal, I want to be me. I want to be silly, goofy, and weird. I want to be awkward with my words and yet still understood. But what if people can’t understand that about me, what if they reject me. Then who will I be? Will I cease to be Kim?
Well, I guess that’s why I’m here. It’s time to face my fears. It’s time to find out why I am loveable. It’s time to find out if I can be accepted and be myself. It’s time to seek God and allow Him to drive me down this path called life. It’s time to give up control and accept the fact that I am not perfect, but for reasons I do not understand, I am loved.