My Vestibulectomy: Part 3 - Long Term Recovery

I had a vestibulectomy in September 2018 to completely remove the excruciatingly painful vestibule tissue around the opening of my vagina. I was nearly immobile for a week and gradually regained movement over the next month. I went back to work after 4.5 weeks. (I have blog posts about the first week and first month you can check out for more detail about the early days.)

In hindsight, I think those first few weeks were the easier part of the recovery process. My job was to take it easy and do nothing, and I honestly enjoyed my time at home. I worked from home a lot, but the physical break and change of pace was nice. Graduate school is long and difficult, and I’d been feeling the burn out. In those first few weeks, I was trying to move around as little as possible and be conservative with my transition back to normal activity. I wanted to minimize the amount of scar tissue in my vagina as much as possible. After the tissue was fully healed, I could begin to work through that scar tissue and focus on my persistent muscle tension.

The scar tissue I developed was quite minimal. I attribute that to the skill of my surgeon and my commitment to really taking it easy in the early weeks when the majority of healing occurred. The scar tissue felt like a pulling sensation in the vagina. I used a cushion with a large hole cut out of the center to sit (from Cushion Your Assets), and it took me time to work up to sitting even with that. If I attempted to sit without it or to sit on another doughnut cushion that was too firm, the pulling sensation was intense and painful. With the good cushion, I was able to start sitting in week 3 and worked my way up to being able to sit for long periods in weeks 4 and 5. I continued to need to sit on my cushion for 9 weeks. I had it inside a tote bag and took it everywhere with me. I was able to sit on it with it inside the bag, so people couldn’t see the cut out. That made it somewhat discrete, at least compared to carrying around a traditional doughnut cushion.

Another effect the scar tissue had was preventing me from wearing jeans. I’m a jeans and t-shirt kind of person, so not wearing jeans at all was so strange for me. I bought some jogger style sweatpants that are loose through the hip area so I didn’t have uncomfortable pressure on my vulva. It took me 7 weeks to go back to wearing jeans and after that amount of time they felt so foreign and uncomfortable. I suppose they are compared to pajama pants! Today, I’m back to my normal jeans style though.

After 10 weeks, I went back to pelvic floor physical therapy. I had two main things to work on in therapy post-surgery: scar tissue and muscle tension. The scar tissue was a new factor, but the muscle tension was a continuing issue for me.

The scar tissue was worked on manually during my appointments. When doing internal work (1 finger in the vagina), my therapist released the adhesions between the layers of tissue to restore mobility and elasticity. It didn’t take very many weekly sessions to work through the scar tissue, around 2 months I think. I also worked on the scar tissue at home. I started with finger stretches, and used one finger to gently stretch the muscles and the scar tissue. I started the finger stretches 10 weeks after surgery, and moved up to using dilators at 16 weeks. I moved a lot slower than most other patients I’ve talked to, so don’t take my lengthy timeline as a requirement.

I’ve used three different types of dilators during this journey, and they each have pros and cons. I started with the Dr. Laura Berman set because they were inexpensive. I like that there is a vibrate option because it helps my muscles relax. Then I bought the set from Vaginismus.com when I purchased their treatment kit. I like that this set has 6 sizes, so the changes are more gradual and it makes the transitions easier to handle. With the Laura Berman set, I got stuck at size two because size three was so much larger. After my surgery, I finally decided to purchase a more expensive, silicone set of dilators. I got a custom set from Soul Source that includes sizes 4 to 7. Size 7 is my goal, so this set will help me get there. Overall, I’ve found the soft silicone dilators to be much more comfortable to use than hard plastic. Also, they can be warmed in hot water, and the heat really helps my muscles relax. I haven’t found them to be as good for stretching though because of the flex in the silicone, but I make it work. Right now, I’m 7 months post surgery and am finally ready to try dilator size 7!

The other main focus in physical therapy is my tight muscles. I have severe hypertonic pelvic floor dysfunction and it didn’t get better on its own post surgery. In fact, I think my muscles were tighter than ever when I first went back to therapy after surgery. That makes sense because my vulva experienced more pain/trauma than ever, and a lot of my muscle tension is caused by a guarding response to pain. There was an important, beneficial change in my muscles post surgery though - they were much more responsive to treatment! Before surgery, I would make minimal progress during my treatments and quickly revert to where I was before. Now, I can make significant progress during a session and maintain that progress over time (sometimes). This is an ongoing journey, so I’ll share more as things develop. I’m still in therapy and working on healing my muscle dysfunction and pain.

The other thing I want to mention is complications of the surgical procedure itself. The only (relatively) common complication is Bartholin’s gland duct occlusion, also called Bartholin’s cysts. The Bartholin’s glands are located on either side of the vaginal opening and help produce lubricant during arousal. The ducts open into the vestibule, so when the vestibule is removed it is possible for the ducts to be unintentionally sewn closed. If this happens, the natural lubricant can be trapped, causing the gland to swell and potentially be painful. I got a blister on one side the first time I tried using a dilator post surgery. It was clear that the duct was blocked and the fluid was collecting below the surface. Because it was near the surface, it looked like a blister; they can also be deeper and not be visible on the surface. For me, the cyst was painful, and I ended up laying on the couch all day. Fortunately, it ruptured on its own after about 8 hours, and then wasn’t painful at all. I haven’t had another one since, so I’m hoping it won’t be a continuing issue.

I’ll keep sharing things as they happen and write about specific topics individually so the posts will be shorter, but I wanted to share an overall view of what long term recovery has been like. As always, let me know if you have any questions or want to know more.