Log in

I forgot my password

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


medication...

View previous topic View next topic Go down

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

libby0327

Posts : 10
Join date : 2011-05-25

View user profile

Back to top Go down

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!!
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

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.
avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

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!

Zazu

Posts : 64
Join date : 2011-04-05
Location : Canada

View user profile

Back to top Go down

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.

lolainslacks

Posts : 115
Join date : 2011-04-18

View user profile

Back to top Go down

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.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

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

Kay_star

Posts : 7
Join date : 2011-07-28
Location : UK

View user profile

Back to top Go down

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.


Zazu

Posts : 64
Join date : 2011-04-05
Location : Canada

View user profile

Back to top Go down

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

Kay_star

Posts : 7
Join date : 2011-07-28
Location : UK

View user profile

Back to top Go down

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.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

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

Kay_star

Posts : 7
Join date : 2011-07-28
Location : UK

View user profile

Back to top Go down

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!
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

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

_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

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,

Claire

Aussie

Posts : 227
Join date : 2011-03-15
Age : 28
Location : Queensland, Australia

View user profile

Back to top Go down

Re: medication...

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

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