Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
HELP me pleeease EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
HELP me pleeease EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
HELP me pleeease EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
HELP me pleeease EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
HELP me pleeease EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
HELP me pleeease EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
HELP me pleeease EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
HELP me pleeease EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
HELP me pleeease EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


HELP me pleeease

3 posters

Go down

HELP me pleeease Empty HELP me pleeease

Post  bee22 Sun Feb 19, 2012 10:58 am

Hi Everyone

I have just come across this forum today and I have finally realised I am not the only one out there.
My name is Bianca and I have suffered from a stinging and burning pain on the inside of my vagina as well as my clit etc being constantly tender. I have been depressed and humiliated for the past 2 years now and do't understand why this is happened to me ontop of my other uncurable conditions (vitiligo to name 1 other thing that is wrong with me) Sad
For the past 2 years I have not been able to have sex with my boyfriend of 3 years (i honestly don't know why he is still with me i feel like a complete let down). I also have not been able to insert a tampon or even my finger inside of me due to the intense stinging pain. I have wasted so much money on different doctors who have tested me for all different sexual dieases etc and can't find anything then giving up on me, as well as them telling me its all in my head!!! which its not.
Leaving me in complete tears and wanting to give up everyday.
I have just been researching Vulvodynia for the past couple of weeks. Does anyone feel that this could be my problem?? I just want to be able to have sex and be normal! (whiping the tears away from my face Sad... again). I live in northern NSW and would fly anywhere to see someone who can really help me.
I don't want to be the one who feels ashamed when all my friends talk about great sex and I hate not being able to feel the passion with my boyfriend like we used to years and years ago
All opinions and help is muchly appreciated

Bianca

bee22

Posts : 2
Join date : 2012-02-19
Location : Australia

Back to top Go down

HELP me pleeease Empty Re: HELP me pleeease

Post  smile22 Tue Feb 21, 2012 4:14 pm

Hi, I'm sorry to hear that you have not had a proper diagnosis for your problem. I have vulvodynia which is 24/7 chronic burning and it has totally taken over my life, so I understand your pain with your relationship and not being able to enjoy girlie chats with your friends, those little things are so upsetting. Please note that my case is pretty extreme and if you do find out that you have vulvodynia there's lots of women on here who have relief sometimes through different meds and they find ways of coping, so hopefully you can too Smile.

It does sound to me like it may be vulvodynia related, you have to keep pushing and pushing your doctors, go into their offices and cry like you do at home, tell them you have NOT got an STD as you have been tested before, just keep persisting until they refer you to a proper gynaecologist..can't help you with finding one as I live in England, but it took me about 3 and a half years to get to see one of the top consultants in gynaecology here and even he's crap ha ha! it's hard but you will eventually find a doctor who knows a bit more about it. My vulvodynia seems to have been caused by me going on the pill which caused recurrent thrush (yeast infections) which seems to have damaged my nerves, does any of this sound familiar to you? Have you ever tried yeast infection treatment - creams, pessaries, oral tablets? If I was you I would ask to be tested for a yeast infection if you haven't already just to rule it out as lots of doctors mistake vulvodynia for this. Then once you have ruled that out, you can really start to have more of an idea about what your problem might be. Also, I'm really not sure how things work in other countries with doctors and stuff, but maybe if you go to your regular doctor and mention vulvodynia, they may be able to come up with someone a bit more helpful to link you to who is near to where you live.

Sorry if this message wasn't much help but I know that you feel so helpless and clueless about what is happening right now and I just wanted you to know a few little things to get you started on the process of finding out whether you have vulvodynia. Like I said, your symptoms do sound all too familiar to me, but I am not a doctor and I'm not going to say that you definitely have it because there is always a possibility that it could be something else that is simpler and easier to cure. Please don't give up and remember that girls like me on here really understand what you are going through and I only found this site about 2 weeks ago or something and I have spoken to lots of helpful and caring people. You certainly aren't the only one so don't feel alone, I know it's hard but eventually you WILL get a diagnosis for your problems. I wish you all the best and I hope that you find a good doctor who is sympathetic and understanding, there is not many out there who specialise in vulvar pain..not where I live anyway! Good luck and try your best to think happy thoughts Smile x


smile22

Posts : 51
Join date : 2012-02-07
Location : England

Back to top Go down

HELP me pleeease Empty Re: HELP me pleeease

Post  kirsty Thu Feb 23, 2012 11:53 pm

Hi Bianca,

I only suffer from provoked vulval pain (i.e. during sex, or (manageable) with a tampon), but I know exactly where you're at emotionally and wanted to first and foremost remind you that it will not always be like this. Because sex is such a big thing in our society, when you suffer from this kind of thing you can easily get yourself into a terrible low that feels like you'll never get out. I've been there - crying everyday, thinking about it all the time. Not only can the pain it be improved by various treatments (once you've found a good doctor), but the emotional state you're in will improve. Looking back over the last few years, there have been periods in which I've been terribly depressed about it all, and these aren't necessarily the times at which the pain was worst - just when I managed to persuade myself it was the most dreadful thing in the world.

The point I'm trying to make is that even if the journey is long, please believe that you can be seeing doctors and persevering with treatment without it taking over your entire emotional life. Do find a doctor who takes you seriously - if you find one that says they have experience with vulvodynia, then they will take your condition seriously, whatever diagnosis they decide to give you. It is not, I repeat not in your head.

<Hugs>

kirsty

Posts : 11
Join date : 2011-11-24
Location : UK

Back to top Go down

HELP me pleeease Empty Re: HELP me pleeease

Post  bee22 Fri Feb 24, 2012 1:11 am

Thankyou both for your support! As bad as it sounds, its good to hear I am not the only one. I went back and sore my doctor yesterday and explained to her what I had researched about Vulvodynia. She has been very supportive but admitted that I was teaching her about the condition!
She did say that I had Vulvodynia and the estrogen cream I have been using is offering a teeny bit of help, however I am unable to put it inside my vagina due to the immense stinging. My stinging is only located in 2 spots and feels like a bee sting, does anyone else get this?
This doesn't allow me to be able to use tampons which sucks even more in the hot weather when I cant leave the house becuase I am wearing a big pad Sad
We have decided to try a combined mix of Free testosterone and estrogen (sorry if i have named it wrong, its off the top of my head) which i can apply before i go to bed, and am really going to try go past the pain barrier and place inside my vagina.
I have read alot about the use of dilators? I don't know whether these wil benefit me with my stinging etc (it doesn't seem like they would lessen the stinging pain inside) however i have read a few ladies thought it wouldnt work but the dilators have. I just don't know how i will be able to put it inside of me .....eeekkk (ouchy) Sad

I would just like to also mention that the I had a great chat with my doctor yesterday, and we talked about all the failed treatments and doctors who told me i was making it up, there was nothing wrong with me and it was in my head. And was horified to learn that the gynocologist I saw over a year ago (when i was 17) may have just dismissed me because I was young and was not important compared to women who were 10 or so years older then me. She had heard this from other doctors aswell! I was disgusted when i heard that as it was emotionaly and physically painful the way he treated me when I visited him. Just for the record I was already in a comitted relationship with my boyfriend for nearly 2 years and still am over a year down the track! He made me extremely angry. Sorry for my vent :s

I will also pass on if I get any results from this new treatment plan (fingers crossed)

Smile xo

bee22

Posts : 2
Join date : 2012-02-19
Location : Australia

Back to top Go down

HELP me pleeease Empty Re: HELP me pleeease

Post  smile22 Fri Feb 24, 2012 4:29 pm

I'm happy to hear that you have a diagnosis but I am sorry that it is vulvodynia Sad it's such a bitch!

I don't believe in dilators unless your problem is on the road to recovery, because I believe that dilators are really to get you used to having something inside of you, and if you aren't getting any relief from medication then realistically irritating the area further would make it worse. That's just my opinion though, as I said before I have it really bad to the point of not going out, so it could help you perhaps when you are a little better though and thinking more about trying to be able to have sex and all that again.

That's good that you had a good talk with your doctor. I once saw a doctor who told me that I shouldn't be bothered that it's hurting me all the time as there's nothing they can do and that I should just get better at oral sex so my boyfriend is happy. He also made me do some tense test thing where they put fingers inside and see if you are tensing without realising, but to suggest this to someone who is already in a hell of a lot of pain is ridiculous. I was 16, very embarrased and confused at the time so didn't complain or say anything back to him and I cried for a week afterwards. Insensitive and rude doctors like that and the one you saw shouldn't even be allowed to be doctors. Good luck with starting your creams and whatever other treatments, hope you get some success! x

smile22

Posts : 51
Join date : 2012-02-07
Location : England

Back to top Go down

HELP me pleeease Empty Re: HELP me pleeease

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