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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


pain clinic

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pain clinic

Post  maggie on Fri Jun 25, 2010 10:04 pm

Hi, maggie here. Last year my GP refered me to a pain clinic at barts hospital, after a long wait my appointment finally came, i went along and saw the dr had a chat took all my papers with me, (not that it did much good.) I was given pregabalin 75mg to take, after being on them for a while they really did not make any differnce, the pain was still very much there,when i went back i told them this they said to stop taking them and that there not much more they could do , i was so disapointed, i then asked her about acupuncture, she said anything is worth a try,(so it's a good job i asked). so i'm now waiting for an appointment, already been waiting 4 months, will let you all no how i get on. I was told by my gyne to see a psychiatrist because when i saw her i was very tearful and low, i was'nt to please to go but u did never the less, which i'm glad i did because at the thime i was on amitriptyline, he told me to stop them and change to duloxetine, which i did , it's not helped with my pain but mentally i feel a lot better to cope with the pain, i still get bad days where i feel like pulling the hair out of my head where you just had enough. Another thing only had intercorse twice in neally three years, it's so painful, my gyne told me it would make me feel better if i did, how wrong was she, the only thing that will make me better is for ths pain to go away, thank god i've got a very understanding husband. At the mo i'm also using ovista cream which takes the dryness away but that does't always work. will it ever go away.))

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Re: pain clinic

Post  Sarah001 on Sat Jun 26, 2010 11:29 am

Hi Maggie, that's a real shame about the pain clinic, some of them are better than others I think. Have you seen a vulvar dermatologist to rule out skin conditions? If you have a skin condition the pain relief angle won't be helpful because obviously the condition needs treating.

Also I'm told Sea Buckthorn Oil helps with dryness, you can either apply it directly to the skin or take capsules and they've found it helpful for dryness in the area. I haven't tried it yet myself but I've seen it mentioned on a variety of other sites and usually really positively.

The other thing I've seen mentioned alot is the use of testosterone cream along with oestrogen cream, apparently the two together work better than just oestrogen cream.

Another option is getting your pelvc flor checked out by a womens health physio, it can cause alot of problems if it's tight and weak so that's another option if you haven't already tried it.
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Re: pain clinic

Post  Sebby (Admin) on Mon Jun 28, 2010 6:23 am


Hi Maggie

Im going to a pain clinic soon, I will be going to King Georges in Redbridge so if i find them more helpful I will let you know as it does depend on the consultant with how much help you get.

It seems daft to try you on just one medication and then say they can do no more for you! From what I have read they should be able to try you on other nerve blockers and I have also heard that sum anit-convulsants help with the pain.

Sarah's suggestions are great and I will be using them myself so thank you Sarah!

Have you tried a anesthetic cream for intercourse? I havnt tried it as Im not in a relationship but Ive heard it helps with the pain

I always have to google the word anesthetic! I soooo cant spell it, I should learn!

Please let us know how the accupuncture works

Take care and dont give up

Sebby
xxx

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maggie

Post  maggie on Mon Jun 28, 2010 9:04 pm


Hi, thanks for all your advice, i'm taking it all in, just a bit worried about using different creams after what
happered at the beggining.
I have tried the cream for intercorse, but it was still very painful, my husband not to keen on it either ha ha!,

King Georges hospital is not very far from me so i don't know why they sent me all the way to barts, (does anyone
on this nhs know what there doing).

I will try the acupunture, if no better i wii asked to go to king georges, thanks so much for that.

It would be interesting to no how others with vulvodynia are washing, i shower ,iv'e been told it's better then
having a bath, also i use nothing on my vulva but on my bottom i use aquous cream, also i would find it a big help if anyone has a sore bottom like me ( although it's normal skin when you look) would let me no what you use please.

All i can say is, Thank god for this forum and also to all of you who find the time to help others,
God bless you all,xxxxxxxxxx

ps.
I'm also a newbie with this computer hee hee! (still learning).

All take care, xxx maggie.

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Re: pain clinic

Post  julia on Wed Aug 25, 2010 12:17 pm

hi maggie i realise i didn't get back to you about what I use on my bottom. it's either aqueous cream or good old water at present, i don't have any magic solutions but will let you know as soon as i find one!

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Re: pain clinic

Post  jules on Wed Aug 25, 2010 11:45 pm

Maggie, I am on the same medication that you went off of. Pregabalin (aka Lyrica). I didn't have much relief w/ 50 or 75 Mgs. so my pain clinic doc increased it to 150 mgs. that made a big difference. you can take up to 300 mgs of Lyrica. I think its sad they told you there is nothing more they can do for you. that is so not true. i'm glad you came up w/ the idea of acupuncture. studies show that that has been helpful for some. have you tried Neurontin (anti-convulsant)? i was up to 3000 mgs of that. I did not get relief until i started taking around 3000 mgs. the other option is physical therapy. that has been found to be very helpful as well. but you really need something for that nerve pain. can't help you w/ washing your bottom. I get to use soap there :-)

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Re: pain clinic

Post  Sarah001 on Thu Aug 26, 2010 10:16 am

I'm really interested to hear how the acupuncture turns out too, I've read alot of positive things about using it for vulvodynia online so fingers crossed!
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