Guest Post: Vestibular Vulvodynia - K's Story

FINALLY I am posting this reader's story.  It was breakup-delayed...

Yay for K sharing her story!  Her experience sounds similar to mine and to stories I have read elsewhere -- antibiotics kicking off pain, multiple yeast treatments, painful sex and urination -- and ultimately, she has returned to having a sex life (woo!) and found great relief from going off birth control.

I LOVE sharing these stories.  I think it is so important for us to know what others are going through.  If you want to share your story, email me at madpeachblog AT gmail.  There are a couple of Facebook groups that are also a great resource -- if you're interested, email me and I'll hook you up.

Vestibular Vulvodynia - K's Story

It was Thanksgiving week of 2009 when I had to go to the ER for a

very bad UTI. I was urinating blood clots and in awful pain. I got 

a 5 day treatment of Penicillin and the subsequent yeast infection 

that followed antibiotics. I treated it with a 7 day kit. 

I was sore after my UTI but didn't think anything about it. It felt like I 

was urinating needles every time I went to the bathroom. December 21 

came and I went to a quick visit from a local doctor who gave me another 

antibiotic prescription for what she thought was a UTI and I took a urine test. 

I started the antibiotics immediately for relief though I didn't register any 

infection I found out the next day. The nurse chewed my ear off for taking 

the pills before I found out, but I was desperate for relief. 

I got pneumonia in January 2010 and was given steroids to calm my 

lungs since I have asthma. I didn't know steroids could give a yeast infection 

but I had such a severe one my vulva swelled shut and became twice it's 

normal size. I got really strong yeast treatment suppositories that 

gave me vaginal chemical burns.

Sex has always been painful for me, even before vulvodynia. I never could wear tampons. It was always just alittle though and after a couple minutes (stretching I suppose) the pain would go away. In February 2010 I tried to have intercourse but I just cried and cried, any thrusting felt like I had been getting paper cuts on my vagina. 

I started to develop itching, just severe itching that nothing would calm it down. Panties started to hurt and felt like pressure on my vulva. I couldn't wear pants anymore either and when my monthly would come, I'd just bleed into underwear since pads were too painful to wear. I had trouble sitting as well so I'd spend most of my time laying down in bed on the laptop, until even laying down caused my vulva to hurt. I started to get pelvic pressure 

around this time as well.

In April 2010 my parents sent me a cushion, and it did help. I was able to sit better but how embarrassing to be 26 years old hauling a cushion with you everywhere. I was irritable most of the time and sex was out of the question. I did anything and everything to avoid any sexual situations with my husband. Masturbation wasn't even possible. Around 

this time I developed clitoris cramps and clitodynia.

I had been on birth control pills the whole time. I was on the same brand and amount for 6 years by this point, so I never thought the pills had anything to do with it. My sister advised me to get off the birth control pills to see if my symptoms got better but I was hesitant and afraid of pregnancy (which was ridiculous, I couldn't have sex!) 

By May 2010 I couldn't take it anymore. We saw our local doctor who referred us to the local sexologist. The nurse on the phone swore I had another UTI which I knew I didn't since I had one previously. I still had to take a urine test and they were amazed no infection was present. I had to wait a month for the sexologist and it was the longest month of my life. 

June 2010 came and I saw the sexologist. She asked a series of questions and I asked if I should get off birth control pills. She said no, they don't think the pills cause vuvlodynia. Then the examination happened. She pressed a q-tip on the left side of my vagina and the expletives that came out of me were something. She diagnosed right there I had vestibular vulvodynia and it was one of the worst cases she had seen. I was given gabapentin cream that had to be specially made and our local pharmacy had NO clue how to. We had to drive 45 minutes one way to a bigger city each time to drop off and pick up 

my prescription. 

The cream worked alright, it took down the inflammation and calmed the itching. It numbed everything though so when I'd achieve orgasm it felt like it was happening through a really thick towel. I went through tubes and tubes of the cream, probably 6 or 7 in the end of treatment.

Every month I'd see the sexologist (We use public health system) and she'd press me did I have sex. I'd say no and she would get miffed I didn't try. The cream didn't work that fast! Soon I was able to start wearing loose pants and that was great! I was still taking birth control pills through all this. 

I still had extreme itching, clit pain, and if I ate certain things it hurt to pee. I still had great pressure in my pelvis, like a 100 pound weight pointed upside down in my pelvis. I learned about the IC (insitital cystitis) diet and it did help stop the painful urination. I went month after month, more cream. I did have intercourse but I was so numb from the cream it was pointless! 

September 2010 was my last visit. The doctor said I was cured! Sure didn't feel 

like it! I had such a mental block against sex that it didn't happen but once 

in the coming months. Sex equaled pain in my book, and who wants to put 

themselves into agony? I was worried the vulvodynia would come back if 

intercourse happened and I worried about another UTI and yeast infection. 

Recovery was stagnant the next half a year and I still had pain to a degree, 

usually the worst flares happened right before my period. I just kept 

avoiding trigger foods for me (MSG and citrus fruits) and slowly tried to 

get comfortable with sex and the idea of it. 

March 2011 I ended birth control pills. Within weeks I noticed a reduction 

of pelvic pressure and pain! I was lubricating naturally like I hadn't done for 

YEARS. I had a sex drive again and felt the most sane I've felt in years. I wish 

I had heeded my sister's advice and kicked the pill right when the pain and itching started. 

Funny enough , I checked our country's national health page about vulvodynia 

and they suggested getting off birth control first thing! I wish I had read that page 

and taken it's advice. Doctors don't know everything! 

It's April 2012 and I still have Vulvodynia and Clitodynia. The pain is less but it's still there. The pressure comes with a flare and if I eat things that trigger me to swell, but I've learned to take a Tums or other chewable calcium supplement if my bladder hurts. It really helps calm the stabbing pains. 

Sex is happening which is good! It's not at the same pre-Vulvodynia rate of 3-4 times a week but any action is good. I still struggle with my mental block against sex and it can take a long time for me to feel aroused, but there's progress. I think therapy would of been good but there's no therapy that's affordable here outside public and the waiting list is half a year. 

Considering that, I think my husband and I are doing best we can on our own..figuring along the way. Communication has been so important, and I'm lucky to have a husband that listens and wasn't pressuring me for sex when I had the awful pain in 2010. 

I did get a yeast infection last July and no vulvodynia pain spike. I treated it with 

yogurt and I healed fine. I'm weary of chemical yeast infection treatments still though. 

My main symptom now is painful and itchy clitoris. I get awoken to having my lady bean itch like it's on fire! I learned that zinc oxide is fantastic for vulva/clit itching so I just smother it on and it really does help. I own a ton of tubes of diaper rash cream! 

Looking back, the best move was to get off hormonal birth control. I think the cream helped heal the irritation but it numbed me so that's a give and take right there. I do believe I was predisposed to this happening since I have Fibromyalgia. My sister was never diagnosed 

with vulvodynia but she had the exact same symptoms as I did for a year until she ended hormonal birth control. 

There is hope and I hope this letter helps someone. Vulva health is nothing to be ashamed about and should be spoken of more openly. I delayed 7 months going to the doctor and I wish I hadn't! Read on vulvodynia and get all the info you can, it really does help!