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» Can you guys tell me your experiences with diflucan/Fluconazole?
Yesterday at 1:29 am by ryn207

» So frustrating!!
Yesterday at 1:25 am by ryn207

» Looking for suggestions or encouragement
Yesterday at 1:19 am by ryn207

» Looking for a friend..... and new problems
Mon Jan 15, 2018 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

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

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: 5

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


I'm new here, I'm so scared :( looking for girls who are new in this

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I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Wed Dec 02, 2015 7:28 am

Hi everyone, I'm from Poland, I'm 28 and I think I have vulvodynia. It all started with a bacterial infection. There is no infections anymore and I'm still suffering, painfull bladder and painfull vulva, it lasts already 8 months. Hard to get any support in Poland, hard to get to a good doctor... I am so so scared, that I will suffer for the rest of my life, that I will end up alone, no man, no children, just misarable life, I'm so scared if I tell my partner - he will leave me. I can feel only a strong anxiety now, I'm week, can't eat. I'm afraid of vaginas sex, I can have it, but after I feel terrible and so much worse. I'm afraid of depression also, because I don't know if I will be able to fight it. I will be glad and happy to talk to somebody here, has anyone here got vulvodynia after a long infection and taking many medicines?
Kiss
Ewa

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Wed Dec 02, 2015 4:49 pm

Have you tried eliminating all potential problem foods and drinks from your diet like caffeine, alcohol, chocolate, artificial sweeteners, citrus fruit and juice, vinegar (basically anything acidic or bladder/urethra/vulva irritating)? Some people find a low oxalate diet helps. If you search low oxalate diet you can get a list of high oxalate foods to avoid.

Simple changes to washing detergent and soap can sometimes help too. Avoid all fragranced soaps and washing powder on your clothes. The same with toilet paper and sanitary towels - use unscented ones.

My problems also started with a urine infection and thrush infection. It seems to be quite common that vulvodynia starts with a simple infection which clears up but leaves pain behind.


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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Wed Dec 02, 2015 5:55 pm

I'm using soap for babies, cotton underwear, not tight trousers, only fresh water for cleaning etc. About low oxalate diet I just read and started few days ago, but I guess it needs more time. Do you know about any herbs or suplements that might be helping? Is it any better with your problems? How long are you suffering?
Kiss

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Wed Dec 02, 2015 9:19 pm

It's best to persevere with the low oxalate diet for at least three months. I didn't find it much help, but I also have muscular issues (tight pelvic floor muscles) contributing to my pain. I've had the problem for 17 months now, but not as bad now as when it first started. Cutting out acidic foods has helped reduce frequency of the burning I get after emptying my bladder.

I've read that aloe vera capsules and marshmallow extract can sometimes help with a painful bladder. I haven't tried marshmellow extract. I tried aloe vera but only for a month. I think I need to try it again for longer.

I hope you find something that helps you.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Thu Dec 03, 2015 3:55 am

Do you also have a worse and better days? I don't know how to handle it when it's getting worse again. I'm just overwhelmed by stress. Thank you for advices.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Thu Dec 03, 2015 10:57 am

I definitely have worse and better days. On the better days, which now are about 50% of days, my average pelvic pain is 1/10 or maybe 2/10. On the worse days (about 25% of days) it is maybe 4/10 going to a maximum of 6/10. (I rate my pain quite conservatively as I also have a chronic sensitization syndrome which affects most of my body not just vulvodynia. To my way of thinking, nobody could remain conscious with a 10/10 rated pain, so when people say their pain is 10/10 I'm sceptical.) On the other 25% of days it is somewhere in between.

It is very stressful to have any persistent pain. Vulvodynia is even worse because it's in an area of the body that it is difficult to talk about with people. For example, all my friends know I have back/neck/leg/head pain. But many have no idea what I have been suffering with vulval and urethral pain. I think it's important to be able to talk with a partner or trusted friend about how you feel. Even if they can't fully understand because they haven't experienced it, it can be good just to talk about it.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Thu Dec 03, 2015 4:00 pm

My scale of pain is from 1 to 4, one is almost perfect, 4 is hard to stand, past two months I had 2 everyday. Today my pain is 4. I had this problem for eight months now, and I already don't remember my old life Sad Do you think your pain will gone completely one day? Will it be perfect like it was? Or for the rest of our lifes there will be something wrong there... Sad I had headaches also, migraines. I tried to talk with my mother and sister, but everybody has some problems and that their problems are the worst...

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Thu Dec 03, 2015 4:53 pm

I also find it difficult to remember what I felt like before this pain started Sad . I'm not sure I believe I will ever be completely cured of it, but I do believe it will be better than it is now. I have to believe that or I would get too depressed. The pain specialist I saw in the summer said that neuropathic (nerve) pain often goes away after a couple of years. So I think ahead to summer 2016 and really hope that by then it will be mostly or completely better. Many people do get completely better - but once they are better they don't visit websites like this one, so the messages on websites like this will always be skewed towards the negative because most people are posting messages to ask for help or share advice. Try not to be too discouraged when you read about people that have had the problem for a long time. It doesn't mean that you won't ever get better. (I know it is difficult not to get depressed. I've had some really miserable days.)

The worst thing, for me, is the disruption it causes to my life: if it hurt but I could still do everything I wanted to do then it would be easier to cope with. I just want to be able to sit on a chair for more than two minutes without having to take a giant foam cushion everywhere(!) and I want to have a full relationship with my husband again.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Fri Dec 04, 2015 3:14 am

Have your other pains also started at the same time as vulvodynia? Are you able to have sex sometimes? Without suffering after... I think it would be easier to stand if I were single... My partner keep telling me that he will wait, that he is patient, but he also thinks that I am panicking too much... I'm sure his patience soon will be over.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Fri Dec 04, 2015 9:02 am

No, I had my other pains for over a year before the vulvodynia, and the headaches for years. Sex - no, it's just not possible at the moment. Luckily, I have a very supportive husband. Communication is very important. If your partner loves you and is the right person for you then he will support you through this. It may not be easy - he's bound to get frustrated and impatient at times as he is only human - but talking about those feelings is important.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  Ewa on Fri Dec 04, 2015 7:12 pm

What kind of headaches do you have? Migraines? I read that women with vulvodynia suffer also for migraines... What is this other pain feels like? I am trying to be very honest to my partner, telling everything, I guess if he leave me it won't be my fault.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

Post  PainBlogger on Sat Dec 05, 2015 3:48 pm

Migraines, yes. My whole CNS is pain sensitized.

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Re: I'm new here, I'm so scared :( looking for girls who are new in this

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