My Vestibulectomy: Part 1 - The Hospital
I decided to have a vestibulectomy after about 8 months of trying the more “conservative” treatments. I tried topical hormones and nerve blockers. I tried physical therapy and vaginal suppositories of muscle relaxers. I was seeing a psychologist regularly. But, I was hardly making progress. The pain never lessened and intercourse was still out of the question. Twice, after a physical therapy session, a hot bath, and a dilator warm-up session, my husband and I achieved penetration. It was still very painful, but I did it. It was enough to give me hope that pain free sex was even possible someday.
Based on my history and symptoms, my doctor (Dr. Rachel Rubin, urologist and sexual medicine specialist) and I are pretty sure that I have the neuroproliferative type of vestibulodynia. Which is essentially a birth defect; there are too many nerve endings in the vestibule tissue, so even light touch is extremely painful for me. With this type of vestibulodynia, and with the severity of my pain, surgically removing the vestibule was the best option for me.
When I decided I was ready to move forward, I scheduled one final pre-surgery test - a vestibule numbing test. When only the vestibule was numbed with a strong topical cream, my pain was gone! The same spots that had felt like fire a few minutes before did not hurt. And, I was able to insert the largest dilator without horrible pain - I had never done that before. I could feel the tightness of my pelvic floor muscles, but after months of PT, I’m able to distinguish vestibule pain and muscle pain. At that point, I was 100% sure that I was ready for surgery, and was very hopeful that it would work! (The reason I haven’t been using the super numbing cream as a treatment, is that I felt horrible once it wore off. I was noticeably sore for a couple days after that.)
I spent a long time talking to Dr. Rubin that day and at another pre-op appointment to make sure I had the answers to all of my questions. I had been thinking about the surgery since my diagnosis nearly a year before and had been doing a lot of reading already, so I felt comfortable with the procedure itself. I’ve still never had the nerve to watch the video on YouTube though; the pictures have been more than sufficient.
Most of my unanswered questions were about the long recovery, and these were also the hardest to answer. Every patient has a unique experience and there are a wide range of experiences, so it was difficult to say with any certainty what my recovery would be like. But, as a fellow scientist and lover of data, Dr. Rubin had collected survey responses from her vestibulectomy patients about recovery, so there was something for me to go off of. Also, I talked a lot with the members of the Vestibulectomy & Vestibulodynia Support group on Facebook. Though, that information was less useful to me because the surgeon choice seems to play a big role in the recovery process.
I had a general idea that I would be in bed for 1 - 2 weeks and be out of work for 4 - 6 weeks. I knew I would need someone to take care of me for the first week or so. I knew that I would be taking 4 sitz baths a day for two weeks, and then 2 a day for two more weeks. I knew that I would spend a lot of time with an ice pack on my vulva for the first couple of weeks. I had a long list of supplies I would need; the ladies in the Facebook group helped me a lot in making that list.
I had a lot of what I like to call “head knowledge.” I had a pretty good idea of what to expect when I looked at the situation objectively. But, I was still nervous, and I think that was because I didn’t know what to expect emotionally. This was my first major surgery, so I’d never been through anything similar. I didn’t know what it would be like to actually DO any of this. To calm my nerves, I kept going over all the reasons that I knew this was the right choice for me, and remembering all the people who had surgery before me and gotten better. Most importantly, I had 100% trust in Dr. Rubin, and that meant everything to me.
Leading up to my surgery, I tried to get a lot of things done that I knew would be difficult for me afterward. It helped me feel less anxious when I felt like I had everything in order and was ready. I did a lot of cleaning, a lot of laundry, and a lot of running. I knew I was really going to miss running, and it was stress reliever in itself. I also prepared at work for my extended period of teleworking. I got all my files in the cloud so I could access everything from home, I made a plan for what I would work on, I notified the appropriate people at work that I would be teleworking, and I brought home a lot of binders of stuff in the last few days. Feeling prepared really helped me feel less nervous.
The day of my surgery, I arrived at the hospital at 7 am with my husband and my mom. After I checked in, it wasn’t long before they took me back to start getting ready. My room had 3 walls and a curtain facing the large middle area with the nurses station. I changed out of my clothes and into the classic backless and ugly hospital gown. I did get yellow socks though. Apparently their hospital socks are color coded and yellow told all the nurses I might fall down. :) Even with my lovely socks, I was still cold and the nurse brought me a WARM blanket. I was surprised and impressed. All of the hospital staff I interacted with were so nice!
I got my IV next, which wasn’t bad because the nurse got it on the first try. After that, I sat alone for a while in my pile of blankets. There was a nurse’s meeting at 8 AM, likely with the shift change. To keep myself from getting nervous while I waited, I sang to myself. That probably sounds odd, but music is in my soul and singing a song with encouraging words helped me stay in a good mental space.
The next to arrive was actually Dr. Rubin, with my husband and mom close behind. I wasn’t nervous after that. Like I said, I had (and still have) 100% trust in my doctor, so being able to talk with them the rest of the morning was very calming for me. I knew I was in good hands.
A lot of nurses came in and out putting information in the computer. The assisting doctor came and introduced himself, and the anesthesiologist. It was quite busy really. I kept reminding my family not to touch anything, especially the bed rails. I’m a microbiology nerd getting a PhD and I do research on drug resistant bacteria that live in hospitals, so I knew too much about what was around me. My mom usually finds my nerdy comments entertaining and was making fun of me for going on about how hand sanitizer doesn’t kill Clostridium difficile spores. Well, it doesn’t! And the doctors just agreed with me when she told them. I won that time, Mom.
Before they rolled me back to the operating room, they started some type of anesthesia. I remember telling my husband not to touch the bedrail again as he walked beside me, and the really disorienting feeling of gliding, laying down, while on meds. It felt like a roller coaster. I have a very brief memory of the bright lights of the operating room and hearing Dr. Rubin’s voice, and then I was out.
I woke up in a recliner in a similar room with a curtain for a wall. I already had a snack on the table waiting for me. I was very aware of feeling like I was wearing a giant diaper. I was surprised at how easily I woke up. My husband got his wisdom teeth removed just last year, and I got some great video of him saying ridiculous things. I just woke up and immediately felt normal. Kudos to the anesthesiologist, I suppose, for getting the dosage just right. I’m pretty sure I remember a nurse nearby when I woke up to keep tabs on me, and to make sure I ate my snack and drank my juice. My husband and mom showed up pretty quickly (and were disappointed I wasn’t loopy). They had already gotten a debrief from Dr. Rubin who said everything went perfectly - hooray!
The one requirement I had to fulfill before I could go home was to pee. Sometimes the bladder doesn’t wake up after immediately anesthesia, so they have to be sure you can pee before you leave. My mom always has this problem and ends up going home a catheter. Fortunately, I didn’t have a problem and was able to pee right away. The amount of blood was a little shocking, but it wasn’t painful.
One of the BEST decisions I made was deciding to pay for an extra medication - a long-acting numbing medication called Exparel that was injected after the stitches were completed. I was in no pain when I woke up. And, spoiler alert for my recovery blog, I was never in a lot of pain. Exparel is amazing and I highly recommend it!
After I peed, I was cleared to go home. I got rolled out to the car in a wheelchair, awkwardly plopped into the reclined passenger seat, and we made our way home. In all, I was at the hospital for about 5 hours.
When I got home, I changed into the cozy nightgown and robe I had bought and got settled on my doggy pee pad in bed. Where I would stay for the next 4 weeks... to be continued…
Overall, my experience at the hospital was a lot easier than I expected. Everyone I interacted with was very nice. I mean, I got a warm blanket! But most importantly, I had a doctor that I 100% trusted to do the surgery. You really have to trust the person you’re letting cut up your vulva, am I right? In talking with other patients, it seems the surgeon makes the biggest difference in the experiences people have, so I encourage you to seek the best possible! As always, feel free to contact me if you have any questions or want to know more.
*Updated in May 2019, with permission, to include Dr. Rubin’s name.