Vaginal Pain (Vestibulodynia) Update

CalinAZ · May 2013

As I have really appreciated the updates from ladies dealing with vaginal/pelvic pain, I thought I'd share, since I just got back from a specialist (and have found little to no information on women ttc with my condition, so I hope this might help someone else). Backstory - I've had vaginal pain since I became sexually active almost 10 years ago, to the point that sex is super painful, as are other things. If you'd rather skip over the somewhat wordy details, surgery might be able to correct my condition and end my pain.

After no luck with any previous doctors, I visited the Arizona Vulva Clinic today. Once I got inside (and got over my slight embarrassment at the aptly named facility), I was very impressed. As other ladies have stated, going to a doctor who is an expert in this kind of pain makes a huge difference.

He did a quick exam, which verified my diagnosis of vestibulodynia, and then went over the three primary causes and treatment options. It's likely I have primary vestibulodynia (i.e. it wasn't caused by anything and is something I've always had), and for that, he said that the best option is a vestibulodectomy. It'd be an outpatient procedure, and I'd go under general anesthesia while they would remove a 3mm section of the back of my vaginal opening (to cut out the vestibular nerves), and then stitch part of the hymen over that part to cover and protect that area. With cases like mine, there is a 95% success rate!

It'd be 3 weeks of more intense recovery and 6 weeks to theoretically no pain. I'd need to see a pelvic floor therapist afterwards to correct the pelvic floor disfunction that this condition causes.

After almost a decade of pain and no answers, having a doctor confident in "fixing" me is pretty incredible. I'm a bit nervous at having part of my lady bits cut out, but the success rate is hard to argue with. The only time I'd be able to have the surgery would be in a couple of weeks, so this all might be happening soon. This would also obviously put TTC on hold for a couple of months, which is hard since we're only two from that 1 year mark, but I think it would be worth it.

Any good thoughts anyone can share as I head towards having this surgery would be wonderful! The idea of having sex with my husband that doesn't cause extreme pain seems like a fantasy, but maybe this surgery will make it happen

(And thanks to those of you who made it through this monster of a post!)

Rocknroll64 · May 2013

I'm glad you've found a solution! Sending good thoughts your way!

mrs_tacos · May 2013

Thanks for sharing. FX for you!

beckynsean11 · May 2013

I have no feedback on the procedure itself. But I'm glad you've found a Dr and seem to have a plan together. GL!

Twinkie0612 · May 2013

GL. I hope the surgery provides the relief that you have been looking for!

bumpuser9058414 · May 2013

You must be so relieved to have a solution. Good luck and a speedy recovery!

mythaldo · May 2013

It's good to hear you are going to get the treatment you need. I have vulvodynia related to my interstitial cystitis, and when I'm in a flare, sex hurts like hell (which sucks, because I love gettin' it on). I couldn't imagine having it all the time. This could be a whole new chapter for you. Good luck!

BethRN1987 · May 2013

Oh good news for you yay! Glad you have a plan to get some relief if what you've been dealing with

sueann911 · May 2013

Great news. Good luck with the surgery and I hope it gives you some relief!

catmagick · May 2013

Calin oh my gosh!!!! I'm so excited and happy for you!!!!! I know how it feels to FINALLY get a diagnosis and have and end in sight, only I can't imagine how you must feel after ten YEARS! I had issues with flareups for about 5 years before having a flareup that just never went away this past October. That's when I really took action because I was in so much pain I couldn't stand for extended periods of time. I can't believe you dealt with this for ten years; I give you mad props!!! I am having surgery on Friday and I CAN'T WAIT for this to just be over. Please let us know when your surgery is--we can comiserate!!! Big congratulations!!!!!

BlackBooks · May 2013

I'm so happy for you! Hopefully you can find comfort in having a plan of action. Good luck!

HisLovf · May 2013

Glad you're getting answers. GL!

bornmommy · May 2013

Wow. That sounds like no fun at all but I'm happy you found some answers that may cure your pain! Keep us updated on the surgery and recovery!

mmb248 · May 2013

So glad you have a plan of attack! I hope everything goes smoothly from here on.

britneyfaye · May 2013

So happy you found a solution and a doctor who seems to know exactly what the issue is! Good vibes to you!

britt6292 · May 2013

Glad you got to hear some good news!

happilyeverafterxo · May 2013

Oh gosh, honey. Wow! I'm so glad that you found this doctor! I can't imagine the emotions flooding through you right now. Sending lots of positive thoughts and prayers your way!

herecomesthesun · May 2013

I hope this works and you'll be back to "business" soon.

blondie10m · May 2013

I had this surgery the year after I got married and it changed my life. I wouldn't call sex enjoyable but it is no longer something I dread and there is almost no pain from most positions. DH is much happier of course and I enjoy making him happy and being intimate. I did have sex before the surgery but it felt like a file rubbing my vag and I was gritting my teeth and sometimes had to stop. Best of luck to you!

ThankfulSnail · May 2013

I can't imagine how the last 10 months TTC has been with this kind of pain. So glad you have found a doctor who knows how to help you and that you have a plan in place.

CalinAZ · May 2013

Thank you so much everyone for all the well wishes! I really, really appreciate it.

mythaldo:It's good to hear you are going to get the treatment you need. I have vulvodynia related to my interstitial cystitis, and when I'm in a flare, sex hurts like hell (which sucks, because I love gettin' it on). I couldn't imagine having it all the time. This could be a whole new chapter for you. Good luck!

Sorry you also deal with vag pain. Glad it's only flares for you, and not constant, but that still must really suck. Hope it improves for you! Thanks for the luck

CalinAZ · May 2013

catmagick:
Calin oh my gosh!!!! I'm so excited and happy for you!!!!! I know how it feels to FINALLY get a diagnosis and have and end in sight, only I can't imagine how you must feel after ten YEARS! I had issues with flareups for about 5 years before having a flareup that just never went away this past October. That's when I really took action because I was in so much pain I couldn't stand for extended periods of time. I can't believe you dealt with this for ten years; I give you mad props!!! I am having surgery on Friday and I CAN'T WAIT for this to just be over. Please let us know when your surgery is--we can comiserate!!! Big congratulations!!!!!

Thanks, Cat! I'm am so excited for you and your surgery as well. Sending many, many good vibes your way! I should know tomorrow when my surgery will be (and I'm really, really hoping I can schedule if for when I'd like). Can't wait to hear how yours goes!

CalinAZ · May 2013

blondie10m:
I had this surgery the year after I got married and it changed my life. I wouldn't call sex enjoyable but it is no longer something I dread and there is almost no pain from most positions. DH is much happier of course and I enjoy making him happy and being intimate. I did have sex before the surgery but it felt like a file rubbing my vag and I was gritting my teeth and sometimes had to stop. Best of luck to you!

Thanks so much for sharing your experience! I would love if you wouldn't mind PMing and giving me some more details about how the surgery (and recovery) went for you - but I'm super encouraged to hear that you'd describe it as "life changing." Your prior sex experience sounds like my current one, so hopefully I'll have equally good results .

lorirachel · May 2013

good luck with everything!

blondie10m · May 2013

Sure, I'd be happy to pm. Hopefully I can figure it out, I've never done it before. I should be on tomorrow!

dollymeh · May 2013

That's awesome! Glad you found a solution and have a plan in place. Smile

Milagros315 · May 2013

I'm so glad to hear that you're getting some answers and that the doctor feels confident that this can be resolved! I'm sorry that you're going to have to put TTC on hold, but I hope that this will get you back on track and you'll be feeling better soon!

JerseyGirl129 · May 2013

Glad you found an answer! Best of luck!!

jaytee16 · May 2013

Wow, that sounds awful! I'm happy there's a plan going forward (with such a high rate of success too!). Good luck with the surgery, sending T&Ps your way!