WELCOME

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. Well, I’m not…so, welcome to my blog! There aren’t definitive answers in medical literature to explain the pain cycle of pelvic pain and how to heal it - yet. My hope is that my 21-year obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

MY VESTIBULECTOMY

I finally got a vestibulectomy! December 9, 2016. I feel pretty great about it. I started writing this blog post 12 hours out of surgery.

DAY 0
I'm from San Francisco, California. After an overnight delay in Detroit, we still made it in good time to see the doctor Dr. Conway in Merrimack New Hampshire that afternoon for my pre-surgical conference and exam. A "one-stop-shop". The approval process in my case had started 2 years ago when a close colleague of his P.T. Stephanie Prendergast (in Los Angeles) wrote to him about my case. He sets up a phone interview, you send all your records, and typically will fly in for a pre-conference, but in my case, he was willing to schedule both at once.

Mom, dad, and my husband all came with me. My husband and I have been married almost 20 years, always with my vestibulodynia. We separated 5 months ago, in part, over sex. He decided to come, knowing that if we stay married, surgery will be part of our narrative. I was nervous about this, but so far it is working out well to have him here. We still have a good relationship (when it is good) and he is caring.

The pre-surgical meeting was a meeting in his office with the four of us and then an exam. Both my paperwork and my exam suggested to him that this might be a very effective procedure. My areas of pain are very specific. I roll my eyes at the name "Q-tip test" and keep hoping that some doctor with pull out something other than a Q-tip sometime. Or rename it something more grand, like a "somatic response protocol using a stemmed swab." Puh-lease!

He said he'd give me full vestibulectomy. I'd have a 3-day timed-release pain injection in my vulva to numb it, oxycodone and/or tramadol, and permission to overlap both with Advil. I'm doing this on a lesser amount of tramadol than the max, no oxycodone, and a good dose of Advil. No water submersion, but showering is okay. No lifting of heavy objects. If a stitch popped, it would be difficult to restitch, but that there would be so many individual stitches that a specific stitch alone wouldn't make a difference.

DAY 1
We drove to Saint Joseph's Outpatient Surgery clinic and I got checked in, put on a hospital gown, peed thinking it might be the last painless pee I would have in a while. (I'm also worried about constipation. The doctor actually said that I can/should "splint" which is when I put finger in my vagina to push put in my rectum down and out.) Eventually, I put myself on oral Ducolax.

They gave me Dramamine for possible nausea and there was something in my IV. I passed out into sleep quickly and when I woke up, I asked if I had had the surgery. The only difference I could tell was that my throat was irritated (intubation - I thought of the divine Julie Andrews and her voice being destroyed so I sang some Do-Re-Mi to check out my own).

I went to the bathroom where I saw blood dripping very quickly into the toilet. My husband asked the nurse if it was normal. It is. Over the next few minutes, the dripping slowed down. They had a thick menstrual pad on me that I replaced with a second. We also stole from the hospital one of those doggy-training pads so that I wouldn't bleed on the hotel-suite bed.

The pain is nothing. Not a problem unless someone sits on the edge of my bed or I sit up and put weight on my butt. Then I can feel tautness that comes from the stitches. I don't want to pop my stitches and bleed, so I am lying in bed. Even if I don't feel almost any pain, I have to have this heal well and am accepting help from my posse at this point.

The thing I am most aware of is that my muscles around my groin - inner thigh, hip, lower and lower back feel tense which I am worried about because it has taken so long to get relaxed pelvic floor. And I am aware that I shouldn't sit up. Peeing is fine, although I am leaning forward to try and direct the stream away from the vestibule. Or, hah!, my genital area "formerly known as" my vestibule.

DAY 2
Why did I not pack more than 3 pairs of underwear for a 10-day trip? Oh, yes. I don't wear underwear and it was an afterthought. I just happened to throw it into my suitcase at the last minute. Recovering from a vestibulectomy requires a lot of underwear. I'm bleeding constantly (into a menstrual pad) and my underwear requires almost continuous washing.

DAY 3
I am starting to feel my stitches rather than being just swollen and numb. I'm eating more (pudding and tea and oatmeal to a salad tonight), but still not standing or sitting. My one attempt at sitting was on a  hemorroid donut - the best invention for vestibulitis. Mostly, I sleep non-stop, interrupted only to take pills.

DAY 4
Today's supposed to be the hardest day as the 3-day local anesthetic has worn off. I am feeling good enough so far.

WEEK 1
Yesterday there was dissension in my family as to whether I should be lying in bed recovering or exercising so that I can fly in another 4 days. My opinion was to lie in bed, as was the doctor's. He said that I am not as far along in my healing as he would like. I am not supposed to still be bleeding. He'll decide on Monday whether I can fly home Monday evening.

I got to see my vestibule in a mirror at his office. It looked like chum. Awful. Once Erik washed it, it looks fine and not gross. I have popped a few stitches at "6" and "7" which is disappointing as those are two of my foci for pain. Maybe the doctor can restitch those for me on Monday? Today, I feel better overall and sat up to eat for the first time.

DAY 8
How painful is it? If you have vestibulitis, you can take the pain of healing from a vestibulectomy. For me, it is less pain than having sex - that "I being knifed while acid is being thrown on my vulva feeling - but about the same as the pain I have right after having sex where I hobble around and think about crying and feel angry at my husband, but without the negative emotion. So, I put that in the good category.

I did a menstrual pad count: 48 pads over the first 7 days. I continue to bleed, but it is getting lighter.

I got very upset with my husband (not sex related) and told him I didn't want to be married to him any more. He talked me down.

DAY 12 
I flew home Day 10 with: 1. me in a wheelchair, not because I couldn't walk, but because distances between terminals were far; 2. little pain until the last two hours of my flight. The number of hours of sitting, the cabin pressure (maybe), not being able to move around to pump my blood out of the surgery sight put me in more pain than I have been. Mom brought two ice backs which I melted down immediately. I was near tears.

I saw my doctor on Day 12 and she said the Tramadol is why I have slept so many hours every day - 20 hours? She asked me to try the no medication approach: heat, ice, Advil. I went off the medication and think I had some withdrawal from the Tramadol (or got a mild flu).  I was surprised the pain was manageable. I'd start hurting about 1 hour before my next Advil, but could deal.

WEEK 2
Christmas. I hosted it. I didn't pick up anything heavy, but was able to function fully enough. I sat on a hemorrhoid pad which looks like a donut. Mom wanted to take us to a movie that day and I was like, are you crazy?

I feel the stitches pulling if I move a lot.

WEEK 3
Went to the movies! Brought the pad just in case. The stitches still pull at times, but I also see that they are dissolving and falling out. I have only positive feelings towards my vulva. This is a big change from my hostility I felt because of being in pain for so many years. It feels like a complete reset.

I have some swelling which the doctor said was normal. I had some focal pain that the doctor said was likely a response to a larger nerve branch having been cut.

MONTH 1
I went on a few walks in week 3 with some pulling of my stitches. A week later, I went swimming and everything felt great. I only have one stitch remaining.

It is so nice to be in the world and not have to have an ongoing "conversation" with my pain.

I also have worn tight work-out lycra pants this week. Yahoo!

WEEK 5 to INFINITY (I hope)
I have no pain. I was able to have sex. My pelvic floor was tight so I was sore, but not vestibulitis sore.

I am able to wear underwear. I don't have my hand down my pants anymore. What a miracle.

I feel stupid for waiting so long. But people tell me not to feel regret for time passed.


PHOTOS
I couldn't touch my surgical site for the first number of days and it was so swollen that a photo would not have shown anything. Each photo is taken at the end of each week.
Week 1
Week 2

Week 3

Month 1










Week 5 Completely Healed
You can see the stitches mostly dissolved at Month 1. That's the white stuff.

Also, the entrance to my vagina is more fleshy than it was before. My "g-spot" was pulled forward and sits at the entrance. It's not magical, that just happens to be where it is.











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