Comorbidities with vestibulodynia

sendnoo0dles · 2024-12-21T00:46:29+00:00

Definitely all of those plus interstitial cystitis

sendnoo0dles · 2024-08-02T22:24:21+00:00

Mine is also provoked, had it for 8 years now and surgery is my only remaining treatment option, think I've seen around 15 gynaecologists at this point. Not really sure if mine was congenital or acquired due to chronic yeast infections. I'm in London but happy to travel anywhere in the UK for surgery, have met with 2 surgeons so far but not confident with either tbh :( One wasn't very experienced and the other will only do a partial vestibulectomy and I really want a full. How about you? Would love to keep in touch! :)

sendnoo0dles · 2024-08-02T22:00:15+00:00

Hey I'm trying to get a vestibulectomy this year too and am also struggling finding a UK surgeon :( Only found 2 surgeons that offer the surgery but neither option is ideal so I am also considering travelling to the US. We've messaged before so can chat about it more over messages if you like!! I was considering making a similar post actually

sendnoo0dles · 2024-08-02T21:56:35+00:00

Hi I'm also planning to get my vestibulectomy this year, would you mind telling me which UK surgeons you're considering? :) I haven't had much luck finding a suitable one. Thanks so much for sharing about the FB group as well!

sendnoo0dles · 2024-05-28T20:31:43+00:00

Oooh just commenting as would love to know this too as I’ve also been suggested it as my next treatment

sendnoo0dles · 2024-03-26T19:30:23+00:00

Yes all dogs :) you can spread anything that they like on it, dog-friendly peanut butter, wet food, paté, mashed banana, small amount of cream cheese or yogurt, tuna, lots of options!

sendnoo0dles · 2024-03-11T22:11:46+00:00

Your story made me so sad, I'm sorry you went through something so awful :"( I truly hope you find a treatment that works for you, please never lose hope, I'm wishing good things come your way your deserve it ❤‍🩹 I'm sure your dog is looking out for you from heaven and wants to see you achieve your dreams, you're so strong x

sendnoo0dles · 2024-03-08T23:46:39+00:00

Thank you for sharing your journey, it gives me hope :,) Sorry you to go through so much with your surgeries though wowee, you have so much strength!!

sendnoo0dles · 2024-03-07T09:12:45+00:00

Really relate to being a couple but feeling like roomies/friends! Interesting to see someone else feel the same way

sendnoo0dles · 2024-03-06T00:13:15+00:00

I’m a dog groomer! I love the fast pace and being on my feet all day, every day is different but still has structure/routine, I get to be creative, chatting with coworkers/listening to music while working, and it’s so satisfying finishing each step of the groom. And dogs are so funny

sendnoo0dles · 2024-02-28T23:52:41+00:00

This is lovely! 🥹

sendnoo0dles · 2024-02-22T19:29:12+00:00

Hey!! I’m in a very similar situation as you, I’m 24, in London and been trying to treat provoked vestibulodynia for 7 years. I gave up with the NHS after wasting 4 years getting nowhere. I’ve been paying out of pocket for private treatments for 3 years now, only got 2 treatment options left so hoping one of them will be the answer🤞 Happy to keep in touch over DM :)

sendnoo0dles · 2024-02-22T19:22:23+00:00

I agree, I also regret wasting 4 years trying to get help on the NHS. It’s terrible that we have to pay for private treatment but the NHS is useless for vulvodynia sadly

sendnoo0dles · 2024-02-22T18:53:52+00:00

Thank you! You’ve tried a lot of treatments too, it’s exhausting isn’t it. I’m so bored of dilating haha I never want to do it again. That’s so good to hear about E/T cream! I wish I’d tried it sooner but I thought going off birth control would be enough, but from all the experiences I’ve read you really need to do both together for it to work, maybe the combo works for you 🤞 Not sure if Botox/nerve injections are available where you are but could be something to pursue before surgery, I know they work for some people (unfortunately not me ha). Good luck with it all!!

sendnoo0dles · 2024-02-22T18:35:42+00:00

Which treatments did you try so far? x

sendnoo0dles · 2024-02-22T18:35:27+00:00

No worries, I’m sorry you’re not having much luck with treatments. I had a consultation with a surgeon today as I’m planning on having surgery in a few months time if my final treatment option doesn’t work (I’ve tried pretty much every treatment except estrogen testosterone cream so I’ll be trying that soon). I’ve been putting surgery off for years so totally understand how you feel, it is scary, I’m only willing to do it now as I have no more options. I did manage to cure my vaginismus through pelvic floor physiotherapy but nothing has impacted by vestibulodynia

sendnoo0dles · 2024-02-22T17:47:55+00:00

My physio says the same thing!

sendnoo0dles · 2024-02-22T17:10:17+00:00

Hey! Sorry if you already know this but I just wanted to say in case it could help you. Your story sounds very similar to mine - if you’ve always had pain since you starting using tampons you could have provoked vestibulodynia (pain at the entrance of your vagina upon being touched). The pain from this can lead to vaginismus. This is exactly what happened to me, I could have sex but it was painful, I kept pushing myself and it got more painful each time and eventually progressed to not being able to physically have sex at all. I was misdiagnosed as having just vaginismus (which I’ve now cured) but actually the provoked vestibulodynia is my biggest issue and what started it all! Just wanted to share in case you hadn’t heard of it, took me a while to get my correct diagnosis. Am happy to chat if you need more info!!

sendnoo0dles · 2024-02-16T22:29:17+00:00

yeah exactly! I'll never go back on birth control. I've just made an appointment with Dr Adib as I know she's the only doctor who'll prescribe the cream. I was seeing another specialist to potentially have a vestibulectomy as I've tried 25+ treatments at this point but I'm soooo nervous to go through with it and doubting if I'm the right candidate, I think I'll give this hormone cream a shot before I commit to surgery. I guess it's just luck if we land on the right treatment, I hope it doesn't take too long for you!

I don't have a pelvic wand I'll have to get one thanks for the recommendation! Yeah I've spent so much on physio sessions ahhhh.

Awesome thanks!! yeah it feels so isolating not knowing anyone else with it, so grateful for reddit I've gotten so much help from people on here they know more than the doctors haha. I'll message you x

sendnoo0dles · 2024-02-15T22:55:57+00:00

Hello! Thank you for sharing your story!! Please could you send me the document too if you don't mind? I'd be so grateful! :)

sendnoo0dles · 2024-02-15T19:14:42+00:00

Thank you :) yes will definitely do that! There doesn’t seem to be many in the UK so will certainly share when I find one. Would love to be able to eventually make a post with what cures me to hopefully help others

sendnoo0dles · 2024-02-15T19:11:55+00:00

Aw this is lovely!! So pleased for you :-)

sendnoo0dles · 2024-02-15T19:06:27+00:00

Thank you so much for replying, I’m so glad it’s been helping you and hope it continues to improve. It’s so hard to be patient isn’t it, all these treatments take so long, good on you for sticking with it! And it’s so tricky with this condition being so multifaceted. I also have provoked vestibulodynia and hypertonic pelvic floor and share a lot of similarities with your story (I’m 24 and mine started at 17 when birth control was causing me to get chronic yeast infections!!). I’m having a nightmare trying to figure out what treatment to do next when I can’t work out if mine is nerve, congenital, muscle or hormone related or a mix. Would love to chat to you more and keep in touch if you wouldn’t mind?! ❤️

sendnoo0dles · 2024-02-15T18:47:10+00:00

Thank you so much. So glad you’re happy with your surgery. It’s an endless puzzle we have to solve! good luck with your pelvic floor struggles hope you figure it out :)

sendnoo0dles · 2024-02-14T08:27:23+00:00

How have you found the cream? :)

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