r/vulvodynia 2d ago

Support/Advice Vestibulectomy recovery questions

For those of you who have had a vestibulectomy, how long until you were able to walk around, and when were you allowed to start exercising?

Do you have any advice to prepare for recovery mentally?

I’m having the surgery next month and I’m not particularly worried about pain, but I’m starting to feel pretty freaked out about being on bed rest for a bit (some people said 1-2 weeks?) and not being able to exercise for 6 weeks or more. Exercise is a huge part of my life, I bike to school, I climb, I lift weights, and I am anxious about the fact that I won’t be able to do any of that for a while. Not to mention not being able to get out and see people for a bit. Im nervous about losing my strength, and I’m nervous for my overall mental health.

Any advice, stories from surgeries, or even just ideas for staying sane during bed rest are much appreciated!!

3 Upvotes

13 comments sorted by

2

u/throwaway112505 Provoked vestibulodynia 1d ago

I've had 2 vestibulectomies, 1 partial and 1 full.

I was able to walk around and take the stairs right away without any problem, which I was surprised about. But, you do not want to be walking around or even really standing upright for long periods of time. Plan to be mostly horizontal in bed for 2 weeks. After that, you can see how you feel and start gradually doing a bit more. I did too much at 1.5 weeks and popped a stitch! You will want to avoid this.

I started taking short walks around the neighborhood at around 3.5 weeks. It would cause inflammation and pressure, so I kept it short at first and gradually increased. I had pain with sitting for 2 months.

My biggest advice is to start making a big list of things that you can do during recovery. It's a bummer to not be able to exercise or socialize like you normally can, so I find it helpful to focus on what you can do. Remember that you will get back to normal exercise and normal life; this is just temporary. You will absolutely gain your strength back.

My therapist recommended setting a "schedule" for each day. Even if all you put on your calendar is to wake up, read a book, nap, call a friend, shower, etc., that is still helpful!

Some things I put on my list for things to do: read books, play video games, organize my Amazon wish list, organize my emails, make a list of recipes I want to try, make a list of hikes I wanted to do after recovery, crochet, knit, set goals, meditate, go through photos on my phone, coloring book, podcasts, audio books, call a friend or family member, play a board/card game, watch TV shows, watch movies, Duolingo, organize Google Drive and files on laptop, plan house projects, clean hairbrush (lol), take an online course

Prepare snacks and foods that you are excited about eating! For example, I froze individual services of veggie lasagna and had some yummy treats like pudding and popsicles. Some friends brought treats too.

Honestly my mental health was relatively fine. I was focused on recovering and had plenty of activities to keep me occupied in bed.

2

u/Available_Mind6066 1d ago

Thank you so so much for taking the time to respond. I really appreciate your insight! I love the idea of making a list of things I can do and making a schedule and will definitely do both of those. Thank you, again

1

u/throwaway112505 Provoked vestibulodynia 17h ago

You're welcome, best wishes

1

u/ugaGal1988 1d ago

Are you healed? Did the surgery work?

1

u/throwaway112505 Provoked vestibulodynia 17h ago

It was very helpful but not a 100% cure. Here's a recap post https://www.reddit.com/r/vulvodynia/comments/wbq7f9/vestibulectomy_success_story/

1

u/vicariouslyhaunted 22h ago

Damn. So you had to repeat this process twice? That's rough. I hope you're doing better now that you've had the full vestibulectomy

1

u/throwaway112505 Provoked vestibulodynia 17h ago

Yeah, it was brutal. Thanks, I am better but not 100% cured.

1

u/vicariouslyhaunted 17h ago

Fuck. Are there any next steps, or is this it?

1

u/throwaway112505 Provoked vestibulodynia 17h ago

I have a full recap post here if you're curious about details https://www.reddit.com/r/vulvodynia/comments/wbq7f9/vestibulectomy_success_story/

I've tried a ton of stuff at this point. Really my only option would be to see Dr. Irwin Goldstein (on the other side of the country) and see if he is willing to operate on a small piece of tissue that's still giving me trouble. Ofc that surgery alone would be like $10k. I'm not planning to pursue that option.

I'm currently doing pain reprocessing therapy to see if I can retrain my brain a bit to have sex be less painful and emotionally difficult for me.

1

u/vicariouslyhaunted 17h ago

I just read through it. Thank you. Would it be okay to DM you about your surgeons?

1

u/throwaway112505 Provoked vestibulodynia 9h ago

Yep feel free

1

u/Competitive-Net1603 1d ago

Just wanting to send lots of healing your way for when you have the surgery. Best of luck and I can’t wait to hear that you’ve come out the other side and slowly but surely you will get back to being your active happy pain free self.

I haven’t had the surgery but I’m trying my last medication and if in 3 months still no improvement then it’s my what I’ll need too. And I feel exactly how you feel. All the best and keep us posted if you feel up to it.

1

u/purplewombat9492 Provoked vestibulodynia (recovered) 21h ago

For walking- I could do short shuffles to the bathroom or down the hallway in the first week. During week two, I could do short walks (specifically I remember a walk around the block was wayyy too much, but I could go in and out of a store and run errands if I was taking it very slowly.)

I went back to work after 3 weeks at home, but I work a desk job, so your mileage may vary there. I was fine walking around my office, just slow.

I hate to be a downer but I wasn't cleared for exercise until 6 weeks, so that does sound accurate to me. It's really important not to overdo it early in recovery- you don't want to pop a stitch or otherwise compromise your recovery, and I've seen so many people try to return to regular activity too early and then regret it.

As someone who also frequently bikes for my commute, I can't remember how long it took me to get back on the bike, but I do remember it was significantly longer than most other things (literally I was having pain free sex before I felt comfortable riding a bike again). I was fine with walking/running/lifting, but I tried getting on my bike and it was an immediate no. I don't climb anymore, but I would also imagine you may run into some discomfort if you spend any amount of time hanging on the harness, so maybe consider bouldering first until you're sure you feel better enough.

Someone else mentioned making a list of things to do while you're recovering and I also highly recommend that! I had people come visit me, and I also saved up Netflix shows and other things I wanted to read/watch until post-surgery so that I had a good list to draw from.

Good luck and I hope the surgery goes well! I had mine about 7 years ago and I've been pain free ever since I recovered.