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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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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



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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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 …

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medication...

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medication...

Post  libby0327 on Wed Jul 27, 2011 11:49 am

Hi Everyone.


I've been giving today Antriptolyne(?) sorry about spelling. Ive also been given lidocaine to use first of all to see if it helps at all.. I havent started either yet. Just wondering if the medication is going to help or if anyone else has tried it with success or side effects?

thanks xoxox

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Re: medication...

Post  Sarah001 on Wed Jul 27, 2011 11:57 am

Hi there, I didn't get on with lidocaine my skin is too inflamed to take it. I take 50mg of Amitryptyline a day and it made me very woozy to begin with but after a month I got over that so it does take time to get used to it. I find it helps me sleep really well but doesn't do alot for my V pain and I had to add more medication however some women find it works brilliantly for V so it's worth a try. Another side effect I have is weight gain and I gained almost a whole stone in the year I've been taking it which isn't like me at all and I'm now trying to lose that. As far as weight gain goes though it does make you eat more so if you're aware of that before taking it you can try not to eat all the pies which will stop the weight gain happening!!
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Re: medication...

Post  noni on Wed Jul 27, 2011 12:47 pm

Hey girl,

I am on Amitriptyline (aka Elavil) 75mg. Took me 5 months to work up to 75mg started at 10mg. I also have lidocaine 2 %.

The medication is doing an ok job in terms of pain management. Side effects for me drymouth mainly.

I still cant wear jeans. I dont care.

Lidocaine is usually for like before sex or flare-ups.


goodluck hun.
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Re: medication...

Post  Zazu on Wed Jul 27, 2011 2:49 pm

Hey!

Ami works really well for some women so give it a go. I tend to get a lot of side effects with most drugs, even at low doses, and I found that ami 10 mg gave me a lot of problems - trouble sleeping (which is the opposite of what it does to most people who take it), dry mouth and constipation. I wouldn't really take my experience as a good example of what could happen if you try it, though, because my dr. was really surprised that I got those symptoms at the low dose. With these meds it's all about balancing the benefits against the side effects at each dose. Be patient too, because your body will adapt over time.

Lidocaine can work really well for some women, too. You can use it for prevention or treatment. For example, one study showed that women who put a cotton ball soaked in 5% lidocaine ointment just inside the vagina overnight for seven weeks had a lot of reduction in pain. Otherwise you can put it on before sex, or just put it on if it's burning a lot. The problem is that it burns quite a bit the first time you start putting it on which can be too much for some women. Also the jelly or ointment that the lidocaine is put into can be really irritating for some women (esp. propylene glycol).

Another option you might want to try is a compound cream instead of ami or lidocaine. My dr. gave me a Rx for a gabapentin/lidocaine compound cream in diffusimax. Gabapentin is another drug for neuropathic pain, like amitriptyline. The idea is that it targets the nerves directly when you apply it topically without putting your whole body through the side effects of taking it as a pill. Diffusimax is a really gentle base so it's not irritating. I put it on 2/3 times a day. It's taken a lot of the burning/stabbing away. They can also make an amitriptyline compound cream if you prefer, with or without lidocaine.

Sorry for the novel! Hope some of the info helps!

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Re: medication...

Post  lolainslacks on Thu Jul 28, 2011 12:03 am

Question -- can this medication work for provoked vulvodynia? Because I don't have constant pain, but I was hoping to try this. I have an appointment with my gyn on Friday to talk about how I'm getting on with the lidocaine, and I was planning on asking if I could try this stuff.

To the OP -- I hope these two things give you some relief. Lidocaine has saved my life, it's made such a huge difference, so I hope it does the same for you.

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Re: medication...

Post  Sarah001 on Thu Jul 28, 2011 12:08 pm

I forgot to mention the dry mouth and I don't know why since I drink huge amounts of water because of it! As for does Ami work for provoked pain I'm not sure, I know some of the women on the VVS site have used it for that but it seems to be hit and miss in their information too. Only way to know I think is probably try it.
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V suffer for 4 years

Post  Kay_star on Thu Jul 28, 2011 1:57 pm

Hi
I thought I was the only one in the world who suffered from this. I have only recently found out what I had after researching on the net (no thanks to my GP). He told me that there is nothing GPs in the Uk can do as they dont know enough about the condition.

Mine started from a UTI (something i have never had before). It did calm down after the first attack in 2007 but I had this niggling feeling in my urethra after passing urine. I have not heard anyone on this site who has mentioned this. Has anyone else expereinced this? Last 2 weeks have been so upsetting for me, the pain in my urethra was unbearable especially after passing urine. The pain varies for me, i sometimes get severe itching; pains around the vagina and burning on the vulva. Recently i have started getting swelling on the vulva and sores. I can honestly say that I am not coping at all well with the pain and often feel like ending it all (havent got the guts to do it which is just as well).

Can anyone who lives in the UK tell me where I can find a Vulva Clinic? I want to try the low oxlate diet but haven't got a clue on which foods to avoid or which to eat. I am going to go to my local GUM clinic to see if they can help. Will E45 cream help with the burning? Any advice anyone can give me would be most appreciated. I'm not even sure if the UK stock some of the treatments available. It appears that the US doctors are more clued up with this condition and take time out to research it. I have been pain free in ages. It can calm down one day and then just explode the next. Sad

Thanks
K

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Re: medication...

Post  Zazu on Thu Jul 28, 2011 2:24 pm

Hey - like Sarah says, the ami, gabapentin and lidocaine/gabapentin cream can all be used for provoked vestibulodynia/VVS. The compound cream has been tested for VVS with a lot of success. @lolainslacks the compound cream might be a perfect option for you if the lidocaine is already working well and you can tolerate it. Adding the gabapentin might really get the nerves in the vestibule to calm down for good.

@Kay_Star, I'm not from the UK but I know a lot of information about where to find vulva clinics is on this forum under the 'information' section. If your pain is mainly from urinating/the urethra, I'm wondering if you actually have interstitial cystitis. I copied and pasted some info below. You can google it and find a lot of info, especially on the IC network website.

There are a few other ladies on here that have mentioned a needle like stabbing feeling in the urethra as their main symptom so it might just be a form of vulvodynia, too. Good luck sorting it out! Be well!
nterstitial cystitis (IC), is a condition that results in "an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes." (2009 New American IC/BPS Guidelines).
The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain.


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Medication

Post  Kay_star on Thu Jul 28, 2011 3:29 pm

Thanks Zazu

I will have a look at what you suggested. My urethra doesnt feel too bad today but instead i now have an itching/burning feeling on the right hand side of my vulva. I will look inot IC too. I hope it isnt this as it's really hard to find a cure for this.

Thanks again

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Re: medication...

Post  Sarah001 on Thu Jul 28, 2011 7:43 pm

Kay_star going to a GUM clinic is a brilliant idea, I found an amazing dr at my local one who sent me to a vulvar dermatologist which is where you should be heading next if there's no infections. The sores and itching make me wonder if you actually have a skin condition rather than V so definitely ask to see a dermo. Alot of the vulvar dermatologists also prescribe pain meds if there is no skin condition, mine has organised what I take and then I trot along to my GP with the piece of paper and collect it. Somehwere on here I posted a link with pictures of various skin problems in the vulva, apologies but I can't remember where but if you scour the site you may find it and can compare the pics to your sores. There are vulva clinics but I do think you need to be checked for a skin condition first. Get yourself along to your GUM clinic pronto!

As for the urethra, I started with what felt like a knitting needle in mine and the nurse I saw thought it was a UTI but I tested negative for one even though I had blood in my urine. The pelvic floor can irritate the urethra too so that's another thing to get checked by a women's health physio. You've barely started yet with getting things checked out to look for a reason so it's way way too early to give up hope and assume the worst! Start at your GUM clinic, then a vulva dermo to rule out skin conditions (V doesn't usually itch) and then onto meds and physio next if nothing is found up to that point.
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Medication

Post  Kay_star on Fri Jul 29, 2011 6:10 pm

Sarah001
Thanks for the advice. I have managed to find some vulva dermatologists but will have to go private. Im hoping the GUM Dr refers me to one. This could be a dermatology problem. Whatever it is, I hope it gets sorted soon.

For years Dr's have been baffled by it - I even underwent a dilation of the urethra and they said i had slight inflamation in the bladder but nothing to worry about. Every time I had a urine test done, blood was always found although it was not visible to the eye. I was told by the GUM Dr that small amounts are nothing to worry about.

I have also heard that hypnotherapy and acupuncture can help treat the condition. Has anyone else tried this, if so did it help?

Sarah001 - are you managing your pain now or are your symptoms still the same? How long have you suffered from this?

UK Dr's need to start taking this seriously. I am grateful to the DRs who are trying to address this. I cant talk to anyone about this. Nobody can understand this apart from the people going through it.

Thanks again

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Re: medication...

Post  Sarah001 on Fri Jul 29, 2011 7:32 pm

Don't worry about going private, there are NHS vulvar dermos and the GUM clinic can refer you so that won't be an issue. I'm still trying to get on top of my pain but I have an incredibly tight pelvic floor due to a joint condition which is complicating my recovery. I don't feel as bad as I did at the start without meds though even though I still can't wear jeans or have sex so I've made a bit of headway with the meds and biofeedback with a womens health physio. Unfortunately I have both VVS and generalised unprovoked pain too which again complicates things. Rolling Eyes I'd got rid of (or masked with meds) the urethral pain but I've just had a UTI so that's set that off again at the moment. The bladder and vestibule are the same kind of tissue so inflammation in one can lead to inflammation in both, I highly recommend reading "When Sex Hurts" to get a more detailed explanation of why and the various causes of V, it's such a great book because it helps patients to figure out why they have V and doesn't just give the crappy diagnosis of "vulvar pain" which isn't a diagnosis but a description of symptoms (I bloody hate that drs won't even look into why we have pain there Evil or Very Mad ). Get to the GUM clinic asap and go from there, mine was great and tested me for everything before a nurse talked me through some of the causes and treatment options for V and I got my referral to a vulval dermo on the spot. It took 2 months to get in with this dermo as they travel round various hospitals to give a specialised vulvar clinic (don't worry nobody else will know why you are seeing a particular one in the waiting room) and a quick examination later she'd decided I didn't have a skin condition so we started on meds. They don't tend to know much about the pelvic floor angle though so you will have to look into a women's health physio yourself either privately (mine costs £35 an hour and I only see her once a month when I go) or as a referral from a GP. But if you have itching and sores you definitely need to start by getting a full STI testing then onto dermatology, I'm astounded your dr hasn't referred you before now with those symptoms. Good luck!
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Re: medication...

Post  Sebby (Admin) on Sat Jul 30, 2011 7:06 pm


RE: Uk Vulval clinic's - see link to below forum post

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics

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neve med compound

Post  Aussie on Tue Aug 02, 2011 6:32 am

Does anyone know where I can get a ami and or gaba compounded as a cream in Australia? I think we are a bit behind!

Thanks,

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Re: medication...

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