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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


Has changing diet actually significantly helped anyone?

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Mon Dec 23, 2013 9:47 pm

A food diary is a really good idea, I need to get down to it !
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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Sat Dec 28, 2013 2:32 pm

The contradictions annoy me the most. Like, I eat a lot of broccoli because it is high in iron and my iron levels are really low probably due to being a veggie. But apparently broccoli is bad for the bladder and vagina ?! Orange juice and cranberry juice have health benefits but are acidic..you can't win! I've started my food diary at least
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Re: Has changing diet actually significantly helped anyone?

Post  Alana3 on Sat Dec 28, 2013 3:17 pm

As long as they aren't hurting you directly you should be ok. Maybe talk to a nutritionist who can help put you in a better direction

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Re: Has changing diet actually significantly helped anyone?

Post  alessandria on Sun Dec 29, 2013 3:50 pm

We shouldn't forget, the official stance in the medical literature on the oxalate diet is that it does not significantly help for women with vulvodynia as a whole. It does work really well for a few individuals, just the way being gluten-free really works for some individuals, and being low yeast works for others. But that's the unfortunate part, VV has a million different causes producing the same symptoms, and so diet will only be the culprit, and thus only be a therapeutic factor, for some sufferers. I have found zero dietary influence in my own symptoms, which has in some ways been awesome (yay, eating what I want!!), and some ways less awesome (boo, no magical cure...). Food diaries are awesome for uncovering the chance that anyone's particular symptoms are related to diet, but I will say that I think the oxalate hypothesis has been pretty thoroughly debunked as a common cause of VV, and it's a pretty challenging diet to adhere to. If you notice no change in symptoms after a cycle or two, it's probably not worth the hassle.

Do keep in mind that weight, rather than diet, can play a role in a couple of ways. Excessive fat is becoming well-known in the literature as a cause of chronic inflammation, and it is also an active secretor of estrogen. One can have the pro-inflammatory variety of fat without even being overweight by BMI standards, so it's absolutely not a matter of being what we term aesthetically overweight. Losing some pounds may help reduce your body's level of inflammatory signaling molecules in the blood, which can then go on to decrease both inflammation and pain with VV. Estrogen is also thought by a few VV experts to play a role in the disease symptoms, though in a really crazy and indirect way that no one has 100% figured out yet. So, losing some fat can be worthwhile, even in the absence of a challenging diet that limits what foods you can eat. Again, no one factor will cure everyone with VV, but we all just have to keep trying until we find something. Smile

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Re: Has changing diet actually significantly helped anyone?

Post  zarli on Sun Dec 29, 2013 9:21 pm

Hi Alessandria
Your responses to forum questions are amazingly detailed and so well informed. It has got me wondering if you may be a Doctor or a professional in some way related to medicine ?
Just curious.....

Thank you for your responses I love reading them they are so helpful.

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Re: Has changing diet actually significantly helped anyone?

Post  samyurai76 on Wed Jan 22, 2014 10:29 am

I was on the anti-Candida diet for years (still am, really). It's difficult to adjust to and I have occasionally succumbed to CAKE and MOAR CAKE! And I never really understood why I couldn't have Marmite, bread and mushrooms - entirely different sorts of yeast\fungus! It did seem to help for quite some time. But it also took time to start helping. Months and months. It's a long haul thing. However, I've recently had a terrible flare up (in spite of the diet) which has ultimately led to my diagnosis (after 20 years) of 'neuropathic pain' - which I'm taking to mean 'vulvodynia'. To cut a long story short - I agree that diet can be a therapeutic measure, but it clearly isn't a solution. That said, a low sugar diet has other huge benefits, so I'll probably keep it up.

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Re: Has changing diet actually significantly helped anyone?

Post  tinkerbelle2 on Sat Jan 25, 2014 4:00 pm

Samuryai - yum, cake! I agree that a low sugar diet is definitely a good idea. There is so much scientific proof and evidence for it too. Most days I eat very healthily but if I want a few biccies or choccies I have them. Or haggen dazs pralines and cream icecream mmm... My food diary hasn't really helped me at all. Also I don't get how if I was fine eating things before then why would I suddenly develop symptoms? I guess things like coeliac can come on randomly and you can develop intolerances and allergies that you didn't have before etc. My mum is a nurse and she doesn't think my diet would have anything to do with the vaginal burning, but that's only my particular vulvodynia. I reckon for other types of vulvodynia especially those connected to cystitis, what you eat and drink could have some bearing on down below. My GP and one gyno I saw didn't think food would affect it either. But everyone has different opinions
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