Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Hi Everyone.

I'm 21 and have had provoked vestibulodynia since I was 15, and now I'm 21. I discovered something was up when I was uncomfortable wearing tampons. Over the years, I developed pelvic floor hypertonicity which I believe caused me to have urinary problems (I have trouble at times urinating and getting a constant stream going, even when I really have to go). My urethra also has provoked pain as well, but I went to a urologist who performed a cystoscopy on me, and found nothing physically wrong with it.

My treatments have involved pelvic floor therapy and dilator work, topical gabapentin cream, and a very low dosage of nortriptyline. Sometimes in combination, sometimes alone. I'll admit that I am not the best with sticking with something, as I become very impatient, so I tend to give up maybe a little more easily than I should. The nortriptyline definitely helped my muscles to become more relaxed, but it just made me feel very sluggish and tired during the day, and I could barely wake up some mornings.

I'm getting to the point of my life, as a 22 year old, who wants to have a normal love and sex life. I've never had a real boyfriend before because I don't date. And I'm not quite sure how to. I live in NYC so if anyone would ever want to meet up and get coffee, and talk about all our experiences, I would very much love to do that! Feel free to message me if you have a similar condition to mine as well and if you have had the vestibulectomy surgery. Lately I've really been thinking about heading down that route.

Hi LILY_,

I also have PVD. Not fun :[. I've had PVD since I was about 16 or 17...I'm now 20. I had a vesibulectomy in New York this past July. I was sick of trying medications, creams and antibiotics. It was getting to be to overwhelming. I had pretty much tried everything accept for physical therapy. My doctor told me in the end it wouldn't help me long term. My muscles were so tight for so long I don't think physical therapy would've ever worked. I'm thinking about going to pt eventually during my summer break from college. My surgery was pretty much a success, but sex hasn't been all that great. My boyfriend and I are new to the whole thing so it's a work in progress, but at least now it's possible.

Let me know if you have any questions about the surgery, I'd love to give you advice!

-Jen

It's good to know that there are other people with the same thing I have that are considering getting/have gotten surgery. I'm just not convinced that this can be solved through physical therapy. Yes, the muscles are tight, but they are tight because SEX FEELS LIKE DAGGERS haha and that causes major stress in all areas of life. I feel like I can't even attempt a relationship until I get this sorted out.
Best of luck, keep us posted!

Hi raquelll,

I had considered physical therapy for a while, since that was my last option other than surgery. After my gyno explained what they do in pt I decided against it. She also advised me that in the long run it wouldn't cure me or anything. So I went through with surgery and it was the best thing I ever did! It was scary, but now I'm pain free and able to have sex, which is a complete God send. I thought for a long time I'd never have a fulfilling relationship or ever have children in the future, but now anything is possible. All the pain is gone, the stress the sadness everything. I wish it didn't have to come to surgery to get this pain to go away, but right now it's pills, injections, therapy or surgery.

-Jen

I also have PVD I believe - is that when it's only provoked ie. only during penetration/sex and only internal?

I have suffered for along time now, around 10 years. I was actually turned away from the best pelvic floor therapist here in Melbourne, AU because he said the skin inside was inflamed or irritated and he couldn't manipulate the muscles properly. So that really makes me thing that for our cases, PT is secondary, if required at all. The "hurts like daggers" part is the first part to solve!

I have tried things like low-dose antidepressants for nerve pain, antifungals etc, to no avail. Pills just ain't working for me. I really think that surgery might be the best option now... but I'm a little scared of it and also not sure if I'm a candidate? Are most PVD sufferers candidates for vestibulectomy's?

Thanks for your experiences, they've helped cement my decision.

Tyger

Hi Tyger,

I too have/ had PVD. I say had because since surgery I really don't have issues anymore...just occasionally. And yes, PVD is provoked pain and it can be internal. In my case it was internal and upon insertion it hurt like hell. Like I said I was going to try physical therapy, but my gyno advised me that it wouldn't be the best option for me since Q tips hurt in there...how could I even stand a finger or 2?? Or what ever they decide to put in you...I know I couldn't have put a dilator in there back then. I would say that women who have PVD are the best candidates for surgery. If the pain is localized it's easy for the surgeon to remove. Before deciding to go through with surgery I really did my research. The most important thing to do is find the right doctor/ surgeon. I would say if they haven't done at least 100 surgeries they wouldn't be the best to use. You want someone with a lot of experience. Plus the surgery is very expensive and usually isn't covered by insurance. But don't let the cost keep you from doing it if you choose to. Your happiness and sex life are worth much more than money and you need those to feel normal.

If you need any more information on surgery please feel free to ask!

-Jen