Starting to Feel Hopeless

[u/wandapietro]

Sorry this post is a bummer. I got diagnosed with vaginismus/vulvodynia in early September when i tried to have sex for the first time with my boyfriend and it was so painful I burst into tears. Like several times. All my friends told me it should be uncomfortable but not unbearably painful so i made an appointment with my gyno to get a wellness check (I’ve never had a Pap smear done) and to ask. My gyno couldn’t even get a q-tip in for the Pap smear.

She referred me to pelvic floor therapy and on my own time i was doing daily dilators to practice. I’ve been in weekly PT for about 4 months now doing stretches and exercises and those haven’t seemed to help at all.

A few weeks ago my PT told me to go to my gyno and ask if they can prescribe me a testosterone and estrogen topical cream for pain relief. Got that prescribed. Been using it for almost a month twice a day. No real change. She says that in 7 weeks if there’s 0 change she could up the hormone dosage or we can start looking at surgery options.

The lack of progress has started to make me slack off in exercising and dilating because i just feel like there’s no point. If it’s a nerve issue i can’t fix it. My boyfriend and i’s sex life is horrible because everything just stresses me out knowing what i can’t do. He’s super supportive and sweet but he hasn’t had sex in almost a year now and I don’t know how much longer he’s going to want to put up with me.

Just trying to find ways to keep fighting for this when I’ve made maybe 1% of progress in 6 months.

[u/Usual_Key_7926]

How does a surgery help/work in this case? Just curious, haven't come across it before

[u/wandapietro → u/Usual_Key_7926]

It’s called a vestibulectomy apparently! And they would cut out some of the sensitive tissue around the entrance. Honestly haven’t looked super super deep into it because the thought makes me queasy but it’s supposed to be like 90% effective the recovery just sucks

[u/glowyblack → u/wandapietro]

Had one 5 years ago, the recovery isn't bad at all, you think it's going to be brutal but it's not. And it really does help, but keep in mind, if you're still in need of pelvic floor therapy, stretching etc etc, that won't go away with the surgery.

[u/wandapietro → u/glowyblack]

Okay good to know! I think for me the surgery would be simply for the vulvodynia. I can tell the dilators and down training help somewhat with loosening or at least getting my body used to it but nothing so far has helped with the nerve pain i get right at penetration. For me the pain is just there, not as much internally.

[u/glowyblack → u/wandapietro]

Then I honestly think you'd be happy with the surgery result. The entrance burning/nerve pain was the worst part for me too.

[u/notsoqt_]

Hi! Your situation seems to be very similar to mine. I was first diagnosed with vaginismus by my primary OBGYN as I also tried having sex with my bf but it couldn’t even penetrate before I was feeling pain. I also did dilators and found some progress until I met a bump in the road and wasn’t making anymore progress. I was later referred to a midwife who specializes in pelvic floor dysfunction and was then diagnosed with vestibuldynia which ultimately meant I need surgery for better results. If higher dosage in cream leads to no avail I would definitely try and get a second opinion and lean towards getting surgery. Don’t feel hopeless, really advocate for yourself and I’m sure you’ll see progress you feel you haven’t been getting!

[u/wandapietro → u/notsoqt_]

Did you get the surgery yourself? And if so how did that go for you?

[u/notsoqt_ → u/wandapietro]

I haven’t yet! I’m currently in college so it’s been pretty hard finding time to schedule surgery. I’m hoping either May or June! I’ve heard only good things about the surgery and the recovery isn’t horrible either if prepped well!

[u/wandapietro → u/notsoqt_]

I feel that for sure. If i do end up getting it it'll be during the summer time but I'm graduating this summer soooo that's definitely gonna be hard to juggle with like finding work. I hope if you get it that it goes super well for you!!

[u/Zestyclose_Carpet_87]

Some ppl I read did not have success with that surgery and it made it worse. I would deff. try other things first. The vestibule is made of so many nerve endings. If be scared to have this done. However, I understand the desperation Try nerve meds

[u/wandapietro → u/Zestyclose_Carpet_87]

Yeah I am superrr nervous and turned off by the idea of surgery in general. Like terrified. My PT is also pretty hesitant to recommend that for me as well. What kind of nerve meds? I'll do some research.

[u/Zestyclose_Carpet_87 → u/wandapietro]

Really? You should talk to your doctor a physiotherapist isn’t a physician. Duloxetine, Lyrica, nortriptyline. I would think that they would try to get you maybe on a medication like amitriptyline to see if it would help some before they go right to surgery…

[u/wandapietro → u/Zestyclose_Carpet_87]

I meant pretty hesitant to recommend the surgery! She’s been great with everything else. She’s the one who told me to go ask them for a testosterone compound cream. I will definitely look into those nerve medications though thank you!

[u/justagirl_7410]

Hi. wanted to say it sounds like you have a really good doctor. Not everyone can say they had access to PT or testosterone so early in treatment! Also wanted to say that a lot of interventions take time. I would wait 3 months to say if hormones really worked because that’s how long it takes skin to fully changeover. The muscles that have been tense for possibly your whole life will take a while to learn a new way to be. I also wouldn’t jump to the surgery unless you’re sure you’ve had vulvar pan for your whole life (those people respond best to that treatment). Esp since you still have muscle tension you can try valium suppositories, botox injections, and acupuncture/dry needling. Even if you have nerve problems the muscles should be able to relax with the right kind of support. 

Treatments aside, the emotional journey of having to try new things and change expectations and hope for stuff and give up on that hope, is also really tough to manage. I’ve been treating my own issues for almost 2 years and the ups and downs are still hard, but I know to anticipate them better. It’s ok to take a break with treatment when you get burnt out, it’s ok to give up hope for a short time, it’s ok to only do what you have energy/$ for, it’s ok to spiral a little bit on days when it feels like too much. There will be other days when you have more energy, more possibilities to lean on, more things to learn. Everyday you are farther on your journey even if it’s just crossing something off the treatment list or taking time to give up before you start up again. I hope you feel better soon. You deserve the very best

[u/Random_throw_away_bs]

I would also look into nerve irritation and nerve meds! And look into all the mind-body stuff on this platform, it's unfortunate how deeply intertwined our condition becomes with our mental symptoms. You're closer to an answer, I'm sure of it

[u/wandapietro → u/Random_throw_away_bs]

Thank you! Will definitely look into some nerve stuff after i try to rule out as much of the hormonal as i can

[u/Big_Total_1416]

I've going through the exact same thing. Went to pft for over a year to fix vaginismus but the pain was still there. Got diagnosed with vulvodynia a few months ago. They prescribed me estrogen cream but that didn't help. And now I'm on oral gabapentin and it helps more than anything I've tried.

Don't lose hope!! Treatment is very trial and error but there is something that will help you! 

[u/Big_Total_1416 → u/Big_Total_1416]

I agree with other comments that surgery has a high success rate but its generally recommended to try meds and other interventions first