Log in

I forgot my password

Latest topics
» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


feeling devastated- Letter from Gyno

Go down

feeling devastated- Letter from Gyno

Post  raffles32 on Mon Nov 05, 2012 2:53 pm

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 :-(

raffles32

Posts : 15
Join date : 2012-10-29

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  BpCookie on Wed Nov 07, 2012 9:01 pm

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
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  cba321 on Thu Nov 08, 2012 7:37 am

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 Smile

cba321

Posts : 69
Join date : 2012-07-14

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  BpCookie on Thu Nov 08, 2012 3:31 pm

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. Smile 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.
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  jen007 on Thu Nov 08, 2012 11:35 pm

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

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  cba321 on Fri Nov 09, 2012 10:13 am

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 Smile


cba321

Posts : 69
Join date : 2012-07-14

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  BpCookie on Fri Nov 09, 2012 6:05 pm

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. Smile
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  cba321 on Fri Nov 09, 2012 8:29 pm

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

cba321

Posts : 69
Join date : 2012-07-14

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  BpCookie on Sat Nov 10, 2012 3:52 am

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.
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: feeling devastated- Letter from Gyno

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum