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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


New here, diagnosed 2 years ago

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New here, diagnosed 2 years ago

Post  mythreesons on Wed Jul 30, 2014 8:17 pm

I'm Teri from Alberta, Canada. I was diagnosed with Vulvodynia 2 years ago after 2 months of terrible burning pain that doctors could find no reason for. I started taking Elavil (30 mg per day) and Vagifem 2 times/week. That kept symptoms mostly under control for almost 2 full years. About 6 weeks ago, I started my first major flare-up for reasons unknown and can't seem to get it under control again. My doctor is very uneducated on this condition and I'm in the process of trying to find a new doctor.

I'm trying to follow the low oxalate diet, but have found conflicting info on it. Some sites list certain foods that are okay while other sites say to avoid. How do I know which list to follow? I've also been taking calcium citrate for about 3 weeks (1200 mg per day). I've had some improvement since the start of this flare-up, but I'm a very long way from total relief. Some days are much worse than others. I'm feeling very lost.

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Re: New here, diagnosed 2 years ago

Post  zarli on Thu Jul 31, 2014 6:13 am

It is so hard and understandable that you are feeling lost. You have been going through this for2 years. Keep researching doctors in your area you will find one that helps it can be along process. It is great that something worked for 2 years that means something will work again you might need your meds updated. Kind thoughts sent your way

zarli

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Re: New here, diagnosed 2 years ago

Post  Alana3 on Thu Jul 31, 2014 1:08 pm

I am not sure about the oxalate diet.  But there is a website solely for the purpose of vulvodynia.  (vulvodynia.com I think) I would go with what they say! Low to NO sugar, no yeast, it's pretty much a gluten free diet.  I couldn't do it I love food too much!  Maybe you should do a cleanse and then slowly add food back in your diet and see what effects you!

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Re: New here, diagnosed 2 years ago

Post  sailor_moon on Thu Jul 31, 2014 9:44 pm

You poor thing! Needless to say you have come to the right place being on here. All the girls are amazing and very informative too Smile

How old are you? What tests and investigations have the doctors actually done on you?
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Re: New here, diagnosed 2 years ago

Post  mythreesons on Sat Aug 02, 2014 12:54 am

Thank you. I am 45. Honestly, nothing has been done since I first started suffering 2 years ago. At that time, my doctor checked my hormone levels, tested me for STD's, yeast and BV. Despite testing negative for yeast, I was put on Fluconazole for a month, which did nothing. My doctor then gave me a steroid cream thinking perhaps I had lichen sclerosis (despite the fact my vulva did not appear as it would if I had this). Didn't help. After everything else failed, I was diagnosed as having vulvodynia. Like I said, treatment worked for 2 years so I've done no further investigating into finding a cause for my symptoms (if a cause can ever be found).

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Re: New here, diagnosed 2 years ago

Post  sailor_moon on Sat Aug 02, 2014 1:04 am

Is your doctor a specialist? A Gynecologist or Vulva specialist? If not you need to find a different doctor who knows what they are doing.

Now, I know what it is like to deal with incompetent doctors, I am seeing a new doctor in 3 days time and I have done my research with hormones! A basic blood test will NOT show a hormone imbalance most of the time. You need to get a special 24hour urine test, saliva test and special blood tests done. I will be asking this new doctor to do this for me because I believe my problem is hormonal.

Have you had a biopsy done? They are nowhere near as bad as people say, I have had 2 done and you literally can not tell where they got done! If you do have lichen sclerosis a biopsy will confirm it.

I have been like this for a year and a half, this new doctor will be doctor number 12! I will not give up until I find a cure for myself!

Do you have any other symptoms? Or are you totally healthy otherwise?
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Re: New here, diagnosed 2 years ago

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