I'm about to hit the one year mark since I started this blog so I'd like to take this opportunity to do a series about my surgery. This will consist of 3 parts: the prep, the surgery itself, and the recovery. I will try to keep this as ungraphic but informative as possible, in case anyone else is considering having the surgery themselves. I just want women to have a first hand account of what it's like so they can weigh their options accordingly since this is a difficult decision to make on your chronic pain journey.
What is a Vestibulectomy? This surgery is a treatment for Vulvodynia, specifically Unprovoked or Provoked Vestibulodynia where your pain is concentrated in the vestibule around the opening of the vagina. This consists of cutting out the skin which hurts and pulling forward the excess skin from inside of the vagina. The reason why this is possible is because the vagina elongates 75% when aroused, so there is actually a ton of extra skin ready to be used. This is actually the same way that FTM gender affirming surgery is done, pulling the skin of the vagina forward to form a penis. Also, MTF gender affirming surgery has the same recovery steps as a Vestibulectomy, since a new vagina must be stretched appropriately to make penetrative sex comfortable with dilators and pelvic floor physical therapy.
My first recommendation if you are thinking about having a Vestibulectomy is to do your research. That probably goes without saying, but since this surgery isn't super common it's not the easiest thing to find information on. You can look up studies to see the success rate, but keep in mind that these studies often end a year post surgery, so they aren't entirely accurate. Some people take longer to heal than others so it's important to remember that we are go at a different pace and someone else's journey may not directly compare to yours.
Secondly, I recommend reading others' personal stories, whether via blog, Opening Up, or on some kind of forum. I read the detailed account of a girl's blog titled Frankengina, which really helped me understand the full range of emotions, self care, and time involved in the whole process. I just discovered this one which looks pretty thorough. If you want a short account and explanation of this surgery you can order Amica Hunter's zine, Franken Crotch. I follow their Instagram account @meatymeekers because they are a riot and their page is full of quirky fun.
Third, try to decide before going to see your doctor whether you want a partial or full Vestibulectomy so you can discuss these options at length when it's time to schedule your surgery. It's imperative that you comprehend the difference in these 2 operations for many reasons to help you choose the right one for your given situation. I've outlined the differences for you below.
Partial Vestibulectomy:
The bottom portion of the vestibule is cut (the area of most pain for a majority of women), at 6 o'clock where the perineum lies and skin from inside the vaginal canal is pulled forward to replace it
Time off of work is predicted at being 1-2 weeks where you should be mainly lying in bed resting
Recovery time is estimated at 4-6 weeks for your stitches to heal and you to be able to walk up and down stairs, sit without a donut pillow, and return to dilating
The downside of this lesser surgery is that some women end up going back to have it again because when the area of most pain is removed the area right above it will become the new area of most pain, leading to even longer recovery time and more $
Full Vestibulectomy:
The entire vestibule is removed (also known as a vulvectomy) and replaced by skin pulled from inside the vaginal canal so you effectively start fresh with a new vulva and labia minora
Time off of work is predicted at being 2-4 weeks where you should be mainly lying in bed resting
Recovery time is estimated at 6-9 weeks for your stitches to heal and you to be able to walk up and down stairs, sit without a donut pillow, and return to dilating
There is up to a 50% chance of getting a Bartholin's cyst due to this surgery requiring the Bartholin's gland to be cut (more on this in my 3rd blog) which may or may not go away on its own
The downside of this larger surgery, besides extra cost and recovery time, is that having a brand new vulva and lips means you must get used to not recognizing yourself in the mirror and accepting a strange body part as part of the new and improved you, which can be very difficult
When you go see your gyno she will do the Q-tip test on you, how Vulvodynia is diagnosed, to map out exactly which skin she thinks should be removed based off how you react to being touched. If you wince in pain or jerk away when poked with a soft cotton Q-tip then this indicates that your nerves in that part of the vulva are firing too much and should be taken care of. Some people find relief from this pain by applying Lidocaine, but for others this stings, burns, and makes the pain worse. Remember, surgery is truly a last resort fix for Vulvodynia, so don't decide to take this measure unless you've exhausted all other options. You can always fall back on medication, wearing white cotton underwear and loose clothing, or an oxalate free diet if you haven't tried treating your vulvar pain in another way yet.
How do I plan for my surgery? Once the operation is set then you should make a list of items to purchase before the day comes so you'll be ready to go when it does. The hospital should give you special panties that women wear post labor which won't rub up against you or have seams to irritate your stitches. They will hopefully also provide you with a donut pillow to sit on so you aren't forced to have pressure on your vulva, but I say order your own, too, so you can have them in multiple places. I personally liked the one below from Amazon because it's pretty flat, so easy to drive on, but still soft and firm enough to support you. My gyno had me make my own padsicles, which were maxi pads with aloe vera and witch hazel essential oils added, then put in the freezer to provide you with a cooling sensation. You may be able to find your own version of these at a drug store so you don't make them from scratch, I was just very worried about my sensitivity to ingredients so I wanted something I knew I could trust. I also made a spreadsheet with the times I needed to take my meds, because there were a lot, and I didn't want to set alarms since I may be sleeping when some of them would come time to take. I also color coded the bottles to make it easier to keep track of everything. You shouldn't have anxiety or nausea meds like I did, but you will have a strong pain med and an anti-inflammatory prescribed to you, at the very least. I also recommend meal prepping, staying with someone who can cook for you/watch over you, and having books and TV nearby where you plan to stay so you will be entertained. Make sure the room you sleep in is downstairs since you can't walk on stairs while you still have stitches (they could rip).
Here is a support group on Facebook if you are looking to connect with others getting the surgery. I think it's wise to actually speak to someone who's had it before going under the knife so you can ask questions and have some fears dispelled for you. Any surgery is scary to think about, but having one done to your lady bits brings out an even greater fear as it's easy to worry that this optional surgery will actually make you worse instead of better. There's no real way to know for sure the right or wrong path to take towards healing and no one can make that decision but you. Please know that I'm here if anyone wants to reach out and inquire for more details about this procedure!
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