My Experiences with Vestibulodynia

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Hello friends!

I debated with myself the past few days how much I wanted to post on my blog about the surgery I’m currently recovering from. It’s quite personal in nature, but I’ve always been decidedly prone to over-sharing. 🙂 Since it’s something that affects many women without them realizing that there’s a name let alone a couple of treatment options, here we are!

For as long as I can remember, I’ve had a gynecological pain condition called vestibulodynia (although I didn’t have a name for it until recently). I know that for most people a topic like this isn’t exactly breakfast table conversation, but the more I opened up about it to my female (and occasionally male) friends, the more I learned that many women suffer from this and other conditions like it in silence and embarrassment. I was always confused about why I couldn’t wear tampons like the other girls in my class without pain, or later why it hurt to have sex.

Vestibulodynia (sometimes called vulvodynia or vestibulitis somewhat interchangeably) isn’t very well understood yet, unfortunately. Its symptoms are really just varying levels of pain during things like intercourse, gynecological exams, tampon use, riding a bike and even for some women just day to day living. In talking with my doctor there don’t appear to be many visible signs, so it’s not immediately easily diagnosed. I can thankfully say that I don’t have any past history with assault or abuse of any kind, so we ruled out a psychological component pretty quickly.

My first piece of advice to other women would be to try to become an outspoken advocate for yourself when you go to the doctor. I’ve had 3 different gynecologists so far and while I have really liked them all, the first failed to diagnose my condition. The second was able to diagnose me, but her personal opinion was that physical therapy was a better route than surgery.

I ended up seeing my third and current doctor somewhat serendipitously and it turned out that she helps run a clinic that specializes in vestibulodynia. People flew from across the country to see her! She talked to me about how physical therapy went and how unsustainable it felt for me given that I would always have to use topical lidocaine to live my version of a normal and happy life.

Then came the next big part of this process, which was the decision to get the surgery. The procedure is called a partial vulvectomy, and it’s actually pretty simple. Since the pain is located in the skin alone, it involves going in and removing just the parts that hurt and stitching the skin back together.

At the time this felt like a pretty tough decision. It doesn’t exactly sound like the most pleasant of experiences and I didn’t really know what to expect. I ended up turning to the internet to look for women who had gone through this and had advice about the effectiveness and post-op healing time. To be honest, I think that there’s going to be a natural tendency to write about something that went particularly wrong. I came across tales of pain and awful recoveries that terrified me.

Thankfully, I had opened up to so many of my friends about my condition by this point that I actually found out one of them had gone through it herself! She was so positive about the experience and the healing process that I decided it was time to get the surgery.

Due to work conflicts and having to be able to take a couple of weeks of sick leave, I had to push the procedure off for 6 months. I’m pretty good at compartmentalizing about things that far off or I would have been a nervous wreck most of that time!

I feel so lucky this whole time (pre- and post-diagnosis and pre- and post-op) to have a wonderful, kind, supportive and understanding boyfriend. He was a lifesaver for those occasions when my nerves would get the best of me.

In case any of you out there are being faced with the same decision I was, I’ll try to provide a bit of advice and information about my experiences.

I always feel better when I know a timeline of events, so I’ll lay that out briefly. The day before my procedure I went in to my gynecologist’s office for a preoperative appointment where we made sure to carefully identify the most painful spots to be removed. She walked me through the recovery instructions and gave me everything I would need.

The day of my surgery I was checked in and they did the normal slow-roll of taking vitals, getting my IV set up, putting on the ever so flattering gown and meeting everyone who would be in the room for the procedure. I have an insane fear of getting the wrong operation done when I go under, so I always make sure to leave an impression on my doctors!

Once I was in the surgical suite I wasn’t awake for long. If I recall correctly, I think we started talking about my half marathon coming up in 4 months. And yes, I do feel confident that my recovery will allow me to train well enough to at least make the 16 minute per mile pace requirement. 🙂

The procedure took a grand total of an hour and I was only out for about 90 minutes. I was afraid that I’d wake up in tons of pain but I can’t say it ever hurt more than a 3/10 at most.

The next thing I was terrified of was moving, but I was able to get up on my own and walk without any issues. I was offered a wheelchair once or twice, but sitting didn’t sound ideal, haha. Maybe an hour and a half after that and I was in the car on my way home!

Right now I’m almost exactly 48 hours out from my surgery and I’m feeling great! I can honestly say that the spot where my IV was hurts more than my surgery site. I’ve been surviving on only ibuprofen and tylenol for the last day (the inevitable narcotic nausea set in for me after the first few doses so no more oxycodone for me) and I’m just impatiently waiting to heal up enough to get back to my normal routines. Thankfully I’m not totally bedridden, but I’m not known for being great at sitting still. If that’s the extent of my discomfort right now, I’ll take it! I doubt I’ll need the full 3 weeks off from work, but boy am I glad I at least planned for them.

Now that my TMI tale has been told, please let me know if you have any questions! I’m certainly not a doctor, but I can at least let you know more about my experiences.

Until next time!