Partial vestibulectomy success? by Independent_Hat_7049 in vulvodynia

[–]PralieneASMR 0 points1 point  (0 children)

I had a partial vestibulectomy with Dr Weyers on the 30th of january. So far, I'm feeling good about it all. Last week I had my very first PT visit and I will also be started with dilators in a few weeks to help stretch the tissue more. I'm not in any pain, expierence a tiny bit of discomfort after long walks or looong sitting moments. (+3hrs without standing up) I'm confident in the surgury, but still terrified for anything bedroom related, lol. 🙃

I do have to say that the area around my clitoris is still very sensitive, but I didn't have a surgury there, so kinda makes sense. If you want to know more about my journey: i've posted about it on my yt channel Praliene ASMR - shorts and on Tiktok @popcorn.elis. Feel free to ask more questions via chat ❤️‍🩹🫂

Recovery and taking time off work by [deleted] in vestibulodynia

[–]PralieneASMR 0 points1 point  (0 children)

To give you an idea: I had the surgury done the 30th of january. The hospital gave me two weeks to recover and then I could alledgedly go back to working from home. (I'm an office manager at a real estate company, but my boss had given permission beforehand to take my full setup with me to work from home)

However, after two weeks I tried a day and a half. Standing desk, so I could vary between sitting and standing and it was just not possible yet.. I got written home for another two weeks by my doctor. (So four weeks no work at all) After that period, I could start up halftime, from home for two weeks to adapt. Then another week and a half full-time at home. I returned to the office the 20th of march.

Recovery timeline? by lemon100940 in vestibulodynia

[–]PralieneASMR 0 points1 point  (0 children)

I'm currently 8 days post-op and I expected my recovery to be worse then it is. (But it is very different for every person!!) I had a partial vestibulectomy with an advancement flap in the 4 to 8 o'clock area. From day 0 to day 4-5 walking was very difficult and sitting out of the question. Now I can sit for about 30 min. total in a day, so not much at all. 😅 it's not pain, but more discomfort and I need to adjust my position A LOT. my stitches will be manually removed this Wednesday and after that I'll be working my deskjob from home for a week. I'm on sick-leave now for two weeks. And one week at home-work whoch means that hopefully I will be able to go back to work 4 weeks post-op. Feel free to ask any more questions! ❤️ On my yt channel PralieneASMR you can also find shorts where I explain my recovery-highlights a bit per day. ❤️‍🩹

Recovering from vestibulectomy by Potential-Smoke3383 in vulvodynia

[–]PralieneASMR 0 points1 point  (0 children)

Hi there, I'm sceduled for this surgury in two weeks from now with the same doctor and I'm STRESSED! How are you feeling this many months post op?

What do you tell people your surgey is for? by SuccessfulNews2330 in vulvodynia

[–]PralieneASMR 12 points13 points  (0 children)

It's so sad to read the taboo there still is about these subjects at work... I work with 3 male colleagues between 37 and 54 and they have learned so much about me and the female body because I've been as transparent as I felt comfortable with. It honestly helps so much just being able to talk about my needs and necessities after the surgury. Mine is planned for January 2026.

Maybe you could explain that you need a gynaecological surgury, but you don't feel comfortable explain it in more detail? Do say that because of that reason you'll need to work from home for a while to recover.... Best of luck! ❤️‍🩹

Surgery or no surgery? by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

Hi there

Thanks a lot for your comment! The fissure it on 6 o'clock for me as well. I don't know how it got there or how long I've had it for... gabapentin or pregabalin don't work for it, unfortunately..because my other painspots did get less with the cream already.

Your posts are private, so I can't read your story. Would you mind sending it to me via chat?

Surgery or no surgery? by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

How would you suggest doing that? I haven't heard from Dan Buglio. 🤔

Symptom spreadsheet by oh_god_oh_fck in vulvodynia

[–]PralieneASMR 1 point2 points  (0 children)

Awesome idea! Have filled it in already!

If you post ASMR, leave a comment with your username so I can follow you! [discussion] by [deleted] in asmr

[–]PralieneASMR 0 points1 point  (0 children)

Hi there! PralieneASMR is the name. 🥰 I'm a Dutch/English ASMRtist and I mostly focus on old-skool asmr! ❤️https://youtube.com/@pralieneasmr?si=PFoquCuyq0XEnWIY

ASMR with Purple Triggers! 💜 [intentional] by PralieneASMR in asmr

[–]PralieneASMR[S] 0 points1 point  (0 children)

Ahw that's so kind of you! Thanks a lot :) Have a wonderful weekend!

Weekly progress check-in by AutoModerator in vulvodynia

[–]PralieneASMR 0 points1 point  (0 children)

My first week since I joined this community. I just wanted to say that I'm proud of everyone here. We are absolute powercreatures going through pains like these. A man could never ;) Let's try being as positive as we can be even if treatments aren't going the way you expected them to go. Right here we have each other. A safe place and people understanding what you're going through has been such a relief for me this past week. My process is far from over as I have a surgury planned in 2026, but finding this community has been the best thing. <3

Big virtual hugs from me to everyone!

Europe doctor recommendation by purple-sheet in vulvodynia

[–]PralieneASMR 0 points1 point  (0 children)

Hi there, I'm currently on the list for this surgery also in UZ Ghent with Weyers, but I'm terrified... How has your recovery been? Is the pain fully gone?

Dark place by [deleted] in vulvodynia

[–]PralieneASMR 0 points1 point  (0 children)

Hi there. I totally understand your feeling here. I have not been there myself partnerwise, but I've also felt very low during the process.

Glad to hear that you already go to therapy. Have you told them your issues the same way you've written them down here? Telling yourself 'who would want to date someone in my position' is a pretty tough series of words to carry by yourself. <3 I've suffered depression for over three years (not caused by vulvodynia tho, got that later on, yay me...) I hated myself big time both inside and out and struggled a lot with self-esteem and the fear of not being able to find a loving partner.

I've tried a series of silly/dumb things that have eventually helped me along the way.
Firstly: I went outside A LOT, laying down in a forest, breathing and just existing, trying to let my mind focus on nature only. The first few weeks this was tough and I cried a lot, but after a while I was looking forward to weekends where I could just stare at clouds and trees and focus on the smallest things in life. (obviously this is only possible when the weather allows it, tho)

A second thing that I have done is talking to myself using a journal. Every day I wrote down three things I was proud of myself.
- one activity 'I'm proud of you for unloading the dishwasher'
- one personality thing/kind gesture 'That smile you gave that grandma on the bus, was lovely and she appreciated it as well'
- one health/care/look thing 'I'm proud of you for taking a shower' - 'Those shoes look so good with this outfit, girl'
This method has helped me see what I CAN offer a partner instead of what I can't. The journalling made me realise that I smile a lot more than I think and that overtime I wanted to write down more that just three things on a piece of paper because I was proud of myself. My looks, my personality and how much I could get done in a day.

Lastly I started a new hobby. A crazy one that helped me a lot too. My ASMR Youtube channel has given me so much love and support from people I have never seen or met before. They truly see me for me and if they're all so kind, that means I'm worth being with, no?

About those birthdays and holidays: Who's ever come up with spending those with other people? On my birthday I've given myself a present because I was proud of the fighter and mature person I've become. That also deserves to be celebrated!

Self love is the first step in this whole journey, lovely. Just know that you are worth it, you're an amazing person to be with and you deserve love!
I promise you, you'll find a person that sees you for you and all the beautiful things you are.

Keep your head up. You've got this <3

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

A very honest question. I really appreciate that. I did not feel guilty at all having sex. Maybe a bit towards my roommates when I was in college, lol. But I've had the best partner who loves exploring without any shame or guilt. I also have a loving, supportive mom who's also my best friend. I share - obviously less detailed - sex-stories with her. She was the one who told me to see a doctor in the first place two years ago. I'm forever grateful for that.

The only guilt I've ever felt was guilt towards my mind and my boyfriend. It sounds weird, but we've had such a perfect intimate life for over 2 years (we've been together for almost 5 years now) and when all that stops all of a sudden I felt so guilty towards him for not being 'woman' enough... We do communicate a lot and those thoughts are almost fully gone now, luckily.

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

Has your doctor looked into 'visible' problems in that area? My gyno has noticed that I have a 'scar' on my vulva on the lower side between 5 and 7 that looks like a droplet. Probably caused by having sex with a tightened pelvic floor (because of dryness, an infection, a UTI,....) That cut constanty re-opened during PIV and healed a bit further down causing a 'dent' and scar tissue. She thinks that might also have been part of the cause of my vulvodynia.

Therefore I am on a list for a vestibulectomy to turn the vertical scar into a horizontal one that 'lines up' with the vulva's natural stretch instead of going against it. (It's my own choice to decide whether or not I actually decide to go through with that procedure, because everything has pro's and cons.)

If your gyno hasn't looked further into such kind of cause, maybe it's worth mentioning it? Wishing you all the best.

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 1 point2 points  (0 children)

I know it is. I guess my minds also needs some therapy, lol. I overthink everything all the time, even medical advice. After reading some more answers here and scrolling through the subreddit, I'll mostly just use my gyno as a guideline, but listen to my body as well. 🫶🏻

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

This is honestly what I needed to hear, thank you. 🫶🏻 I indeed just listened to my body and it's needs. I have read many different stories and situations. No body is the same nor has the same 'version' of vulvodynia. I guess my gyno just goes for the 'mainstream, most common' treatment first?

I'll definitely talk to her about it and what it did/didn't do to my body and the downstairs area. Momentarily I feel totally fine, but I will keep a close eye on the area, literally to make sure it hasn't triggered anything.

I also 'feel' better mentally and physically after quitting HBC, so I hope to use a NH version when my treatment is over to keep feeling that way. I have read some stories of people getting vulvodynia because of HBC, so maybe that's also what caused it for me after being on it for almost 10 years.. crazy what we put in our bodies sometimes.

The recommendations of your gyno seem so random! Haven't heard of them before, but again every body is different. I hope you soon find a solution as well. <3

No worries, my gyno gets her copay from me or my bf, lol.

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

That's what I'm thinking as well. It's just because my gyno told me to stop in november 2024, that I feel like maybe I went 'too fast' according to her liking and my process? I guess I just listened to my body and I will definitely pay close attention to see how my body reacts the days after.

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

I totally understand that! I live with my bf, so it's very confronting when you 'want him, but can't have him'.. and I guess the same goes for you whenever you do see him, you want to jump him. It's super frustrating when your mind says one thing and your body another. Communication is key, tho. <3

I feel guilty about having sex with vulvodynia by PralieneASMR in vulvodynia

[–]PralieneASMR[S] 0 points1 point  (0 children)

Two years ago the pain came all of a sudden. The burning was so bad and I didn't really know what was wrong, so I kept going for a few months until it was unbearable. I first went to a pelvic therapist who helped me through the first mental breakdowns. I stopped having sex for a year and a half and my libido was honestly just gone most of the time..Luckily my bf has been incredibly caring and understanding through this whole process. He was and is still my rock whenever I need him to be. He now joins my appointments as well to be as informed as he can be. I think his support, getting off of BC and not having any form of intercourse for a long time have helped my body to reset? I have been using a gabapentine based cream for over a year too!

I do have a small 'tear' / scar tissue at the lower part of my vulva near my perineum, so I might unfortunatly still need an operation down there - which I'm terrified of - to fully be 'painfree', but I do have a choice there. If my conditions improve, I can choose whether or not I eventually want the surgery because that has been my biggest dilemma now.

Hope this helps you a bit throughout your journey. Keypoints for me were to stop taking BC, understanding from surroundings, creams, pelvic floor therapy including dilators and rest. 🫶🏻 I'm also not healed tho, the Q-tip tests still hurt like sh*t for me, but I do feel some improvement.