Anybody out there with vulvodynia/vestibulitis??

[Emma_08]

I have had vulvar vestibulitis for about a year now and it has been an emotional rollercoaster for me.  I was just wondering if there were any women out there who share this experience?  How do you maintain a healthy sex life when having pain with penetration?  Also, any suggestions on lessening the pain/preventing a flare-up?
Thank you!
Em

[spencypoo1]

my girlfriend of 2+ years seems to be experiencing this same situation.  Our sex life for the past few months has been null. she experiences a painful sensation on the left side of her vaginal wall.  this has been going on for quite some time.

my outrage with the healthworks she goes to is at an all time high. since she does not have medical insurance she has to be treated by these unqualified, rude, poor excuses for Nurse Practitioners. we do not know what to do.  but have scheduled with a regular gynocologist, who will be full priced.  i wish i knew what to tell you... one thing that comes to mind is you are not alone, good luck.

[Emma_08]

Thanks for your post.  I know how hard this can be, especially without insurance, but if possible try to find a gynecologist who is familiar with the condition.  A lot of them don't even know what it is and will tell you it is all in your head.  Estrace cream seems to help, and chances are once your girlfriend starts treatment, it will get better.  I'm not 100%, but definitely much better.  I can now get through a pelvic exam without being in excruciating pain!  Good luck with everything.
Best wishes,
Em

[JudyLew]

I am 59 years old and was FINALLY diagnosed with Vulvar Vestibulitus about 2 years ago.  I doctored for years and to every kind of doctor you can think of.  I have been mis-diagnosed and mis-treated for years!  It's been very depressing and so painful.  I do however have HOPE and some ideas for anyone reading this post.

I now take Calcium-Citrate daily!  I started out taking high doses, and usually that was about 8 a day.  I DO NOT EVER drink TEA.  Any kind can cause a problem. You need to find a chart on foods with Oxylate and determine which ones are high, then AVOID them.  Try hard to eat only low Oxylate foods.  DRINK PLENTY OF WATER.  Use Lydacaine in your vaginal area when you're really hurting.  

I've tried taking Neurontin to no avail.  I find using over the counter AZO or the equivalant to Peridium really helps on flair ups.  I often take anti-biotics (I'm sure that's not great but it often helps).  For years I was told I was having UTI's and then the culture would come back negative and yet I was feeling better.  Therefore, the doctor's are great with helping me.  

Now, sex is another thing and it's a nightmare.  Being an older woman and having a very very understanding husband, I am very blessed.  I would suggest that you just simply try being creative!  I'm not good at talking about this much, so use your own imagination here!  Join a group dedicated to helping us.  I belong to NVA but there are others that you might look into.   There is a lot of talk about this horrible decease and I believe there'll be some great discoveries someday.  Congress has actually gotten involved in trying to help women with this very miserable condition.   You'll just have to try things to see what really effects you.  Read, study and pray.  I'm sorry you're suffering.  There are many out there that have this.  The problem is we don't hear about it cause it's embarrassing to talk about.  Get help and don't let ANYONE tell you it's in your head, cause last time I looked, that WASN'T my head!!!! LOL  See, I made ya laugh.  Now don't cry, just get better.  My doctor was very adamant about me not having surgery.  She told my husband to not let ANYONE cut on me.  

[Emma_08]

That's interesting that antibiotics help - I wonder how that works lol  Surgery is not an option for me - it scares me too much and it isn't a guarantee that things will get better.  It is just really hard to deal with sometimes because I feel so alone and nobody seems to know what vulvodynia/vestibulitis is.  Anybody I tell looks at me like I have three heads and somebody even said to me "I can understand why you think you'll never have a boyfriend again."  That made me feel really good.  BUT I am trying to stay optimistic and hopeful that I can manage this.  I had a doctor tell me that it was in my head - it's hard to believe that somebody that's as educated as a doctor can be so ignorant when it comes to this stuff.  Sheesh.  Anyway, I hope you are doing well and thank you for your advice!!
Best wishes,
Em

[ET43]

I was diagnosed with vulvar vestibulitis 2 yrs ago. I tried daily vaginal estrogen cream x 1 month, pelvic floor physical therapy x 3 months, neurontin and lyrica without improvement. My doctor then did a procedure where he injects botox into muscles in/around the vaginal. And prescribed Lidocaine ointment to use prior to intercourse. I am now 1 yr post botox injection and am now pain free. And, the lidocaine is not needed for intercourse anymore.I don't think many doctors do the vaginal botox injections yet. If you are interested,the doctor who did my procedure was Dr Lennox Hoyte in Tampa Florida. He and his staff were great.