Feeling hopeless

Hello Ladies. I'm feeling kind of hopeless today. I visit the forum everyday in hopes of reading someone's story of feeling good again. Does this ever go away? Is there anyone out there who developed secondary vulvodynia and now feels healthy and pain free again? If I ever feel "normal" again I will not forget to come back to this forum and share my story. Thanks for listening!

I had provoked vestibulodynia and I will tell you that I am considered cured and feeling awesome! It took a while to find the doctor that worked for me, a lot of them thought it was in my head, but it wasn't as you well know. This past October I found a doctor in South Florida that was able to see where the pain was and better yet to show me. He told me I had 3 options and that he wanted to work from cheapest to most expensive. The 3 options were: 1. a compounded cream of amitryptaline, gabapentin and lidocaine (sorry if these are spelled wrong) 2. physical therapy (I was already participating in it) and 3. Surgery known as a vestibulectomy. I tired the first two and they worked for about 6 weeks and than the pain came back. While I was being treated for this he discovered I had strep which I was also treated for with antibiotics (and as far as I know that's gone). After 6 weeks went by, the pain came back I was so depressed because I didn't think I could be cured. Finally, I went back in and he said that I needed to do the surgery. You can imagine how much trepedition I felt when I heard that. I had to schedule it in December because I had stuff to do with work and personal trips that had already been paid for. December 5th was my surgery date you have no idea how bad I flipped out right before, but all I can tell you is that it certainly wasn't as bad as I thought and I am SO HAPPY I did it. The recovery was 6 weeks, and mixed emotions because you feel what feels like vulvodynia, except its just the nerves reknitting it was beyond scary! But at my 6 week mark (actually 2 days before!) he did the dreaded qtip test AND put a finger up in there and there was ABSOLUTELY NO pain!!! I sometimes get a little uncomfortablness on my right side but it's very managable and usually due to muscle spasm. I don't know if you're a candidate for surgery, but the reason I am telling you this is because there IS proof of making a recovery, I am proof of that. Make sure to find a doctor who is well known in vulvodynia. I typed "vulvodynia specailists in South Florida" into google, and my doctors name came up. I am so thankful everyday that I found him beacuse he truly saved my life. Everyday was in pain, my lunch breaks were in the shower, I was depressed and moping and finally found a "cure" or at least no more pain. Take a deep breath and start your search, it takes times and patience, and make sure to go over everything with your doc so that you make sure you are both on the same page. Nothing is more frustrating than when you think you understand something and realize later it wasn't what you really thought. Been there done that ugh! I would say I'm about 98% better I will tell you though that I do work with a dilator (actually my vibrator) and I still see my physical therapist but only every other week now and sometimes I can do every 2 weeks depending, but it was well worth it!

Thank you for your reply Alana! It's so good to hear a success story! I am so happy that you found relief from this horrible condition. When did your V start? Were you ever able to use tampons, have exams or pain free sex? All this started out of the blue one day for me. Sex, exams and tampons have always been comfortable until now. I do have an appointment with a vulvar specialist at the end of June. It was a 3 month wait for an appointment! I am happy for you! Thank you for sharing your success on this forum!

Who's your specialist? Yeah, I could have sex comfortably but not exams or tampons, than one day sex got bad and it continued to get bad and NO one could tell me what was wrong, it was horrible Where are you from?

I am from St. Louis, Mo. I'm going to the Vulvar and Vaginal Disorders Specialty Center in St. Louis.
It's been a long wait!

It'll be worth it

I have found ways of managing my secondary vulvodynia using Lidocaine which is a topical anaesthetic. Ask your specialist about it because after months of using it I was finally able to start having sex with my partner again.

Yes, you will learn how to manage your condition and resume a somewhat 'normal' life. I was a 10 in pain in the first 9 months probably. Once I learned my triggers, what meds work, what therapy works, I am a 1 in pain most days...unless I flare. But, I am learning to control my flares now too. It gets better, but it takes a long time to figure it out!