feeling devastated- Letter from Gyno

So I was left devastated after my trip to the Gybo but recieved the letter that put it in black an white today ...

" Vestibulitis is a condition that no-one knows why it is there ..this is a condition that medical medicine is not good at curing. I am afraid I cannot help further"

I know there are many positive stories n here..but there are so many negative ones, I felt slightly hopeful at the surgery option - but the gyno recommended against it saying it doesn't work and after reading about it , it seems it can make it worse.

I am literally not sleeping and feel constantly sick because I know this spells the end of my relationship- the lack of sex has already taken its toll but the concept of no cure is the final nail....

SO depressed :-(

You poor sweet heart. I'm depressed also. Every now and then I think about surgery but I want to exhaust everything first. I think I'm starting to run out of options too.

So sorry to hear about your relationship. Buy the jerk a blow up doll and kick him to the curb.

Hang in there and I will try to do the same. hugs

I didn't get much help from general gynos as well - one told me I had an anxiety disorder the other said she didn't know anything about it but would find out where to refer me, which she did and I found help that way. I see a gyno who is a prof and specialises in vulvadynia and he has been helpful but a general gyno - not helpful!

However gynos aren't the only health professionals - have you tried a dermatologist (google search your area and see if there is one that specialises in vulva skin) or physiotherapist who specialises in pelvic pain

I have found health professionals who understand it and have options for me, but I would recommend not going to a general gyno or general physio or any type of specialist unless they have a speciality in vulvadynia - it isn't especially common so I wouldn't listen to anything a general gyno has to say, they don't have the time to go through all the research or attend forums and conferences on new treatments for this condition - that gyno should have rang his/her contacts and found somewhere else for you to go, not just shoved you in the too hard basket - very unprofessional! Perhaps contact the receptionist and ask her to get the gyno to pass alternate contacts, i'm sure you have paid the gyno quite a bit of money!

I'm going to see the professor next week about possibly trialling an asthma drug which apparently helps with nerve pain...

There are health professionals out there looking for the answers, but you have to find the small number of them that are doing it unfortunately

Hope you get some answers

Cba321, Your right. There are other specialists out there that can help. Most Gynos don't have a clue. I found a Vulvodynia and Lichen Simplex Chronicus specialist in my area, by googling it. Unfortunately she was at a loss when it came to my issue. She was able to help her other patients but my V and LSC was resistant to all the treatments that she tried. So I started looking for different kinds of specialists like a Dermatologist, Nerve specialist and pain specialist.

I will just keep on looking for that one Dr. who can help. I know he/she is out there some where. Let us know what kind of med. you will be trying. I have asthma so I'm curious as to what the med. is called.

raffles32,

I've heard this story from other women before and have experienced it myself. It's very sad when the doctor you've been seeing can't seem to help fix your problem. I've had PVD (provoked vestibuldynia) for 5 years now and have had to see about 4 doctors before getting the proper help. I would like to let you know that I had exhausted all treatments and had no other option but to get the surgery. I want to let you know that getting a vestibulectomy can be successful. I had my surgery on July 6, 2012 and so far so good. I will be seeing my surgeon for a follow up next Friday.

This is also for cba321

Like I said above it took me ages to find the right doctor/gyno/specialist to help me out. I had seen a physician, a gyno, and an internal specialist. Non could help me. After the internal specialist I didn't know where to go. Then my aunt had mentioned calling around to local hospitals and see if they have any specialists. I wasn't hopeful, but sure enough the first one I called had a specialist. I'd suggest calling a hospital maternity ward. They usually have gynicological specialists that could help you (that's how I found my main gyno...shes amazing and helped me find a good surgeon!).

Hope I could of been some help to you ladies! Stay strong! And let me know if you have any questions!

-Jen

Hi BpCookie

The medication I am possibly going to try is montelukast or singulair is the brand name in Australia. I believe it is mostly used for childhood asthma, but is also used in adults. I have found a research article on it (see below) and I am going to see a professor next week to discuss this option with him, the physio I see told me about this new treatment the professor is trialling. I am currently on endep, it dampens the pain but midly and has lots of side effects that completely outweight the mild benefits. My understanding of the drug is that it works on the "mast cells" and stops them releasing a chemical, that in turn causes inflammation which is irritating the nerve endings. For asthma it stops the inflammation occuring which is blocking the airway but must be systemically working throughout the body. In saying that endep has lots of side effects i'm sure this one will too, but here is hoping it helps!

http://europepmc.org/abstract/MED/17977165

Jen that is really great that your treatment has been successful, always great to hear positive stuff

CBA, What Singular mgs will you be taking? Is it a pill or inhaler? I used to be on a daily dose of Singular for my asthma but the dosage to treat V may be different. Hope it works for ya.

Hi BpCookie, not too sure what the dosage will be as yet but I believe that it is in a tablet form. What dosage did you used to take for asthma? I believe also that it is used only for localised or PVD as well, not for women who have the generalised constant pain, but I don't know too much as yet

CBA, I can't remember what the dosage was, its been a long while since I have used it. It never really worked too well for my asthma but I would be willing to try it again for my V. Let me know how it works out for ya. Wishing you the best.