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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 …

Comments: 0

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.

Comments: 2

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 …

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: 8

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.

Comments: 0

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


Somebody please help me...

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Somebody please help me...

Post  Andlag on Fri Nov 24, 2017 8:05 am

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 was all from UTI (it took me 2 antibiotics to treat it) so it took me some time to see a gynecologist, i got prescribed steroids (prednisolon) and while i was on it i was finally feeling better but not completely. I went back to gynecologist and he said everything looked fine and told me to continue using steroids for 2 more days. So i did. But as soon as I went off them the pain came back with revenge, peeing hurt like hell so i went back to the gynecologist and he decided to test for STDs although I've only ever been with my boyfriend and it doesn't look like an STD. However, that was abroad and I had to go back home cos they couldnt do the tests in the end. I came back home and I was in a lot of pain but realized it was much better when i wasnt wearing tight pants (but its the pants being tight around my stomach thats the problem, not around vagina). So i drank the steroids i had left and started wearing loose pants which finally brought relief. But my vagina was still in a lot of pain on touch. I went to the gynecologist who said everything looked fine and had a pap smear done which came clear. He told me he couldn't help me, I tried mentioning vulvodynia but i noticed he never heard of it and he couldnt wait to get me out of the door. I went to my GP who basically told me that if the gynecologist didnt see anything, its in my head, and she sent me to the shrink. I tried to explain to the shrink that I wasnt depressed and that im not a hypochondriac but he practically said i couldnt know that and prescribed antidepressants. I started taking them yesterday but not because i believe its all in my head but because i was actually starting to feel down. My friends and family are all sick of me and I feel like nobody understands me or believes me but I know my body and I know when I'm in pain. I did the cotton swab test myself so i really believe that i have vulvodynia. I am seeing a different gynecologist today but I'm not hopeful. A few days ago i made a mistake of wearing tight pants for a few hours and pain while peeing started coming back as well. I am feeling really low, my doctors arent helping and are trying to convince me its all in my head... I really need to talk to someone who understands me, to give me hope... I'm only 25 and I feel like my life is over..

Andlag

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Re: Somebody please help me...

Post  fairlight10 on Fri Nov 24, 2017 6:18 pm

Hello Andlag. I believe you and it is not in your head. Many posts on this site sound very similar to your story. You have just got insist you are in pain. Do not take no for an answer. Since being diagnosed with this condition, l have met doctors who have asked me what is vulvodynia and where is the pain?! I have explained and it is quite obvious they had never heard of it. So, keep trying. My medication is low dose antidepressant which gradually desensitises the affected area. Mine being the vestibule. I am sorry your family are not being supportive. Show them this site and they may begin to understand this horrible condition does exist and you need all their love and support.

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Re: Somebody please help me...

Post  Andlag on Sat Nov 25, 2017 8:02 am

Thank you so much your words. I did try mentioning vulvodynia to my GP but she said its probably just a fancy name for when its in your head. I went to see a different gynecologist today and at least she saw in how much pain I was and decided to run some tests, but i think that's because there was redness now. But it always comes and goes so I'm not sure what she'll say once the tests come clear and the redness clears on its own. I'll keep trying for now, this has given me new strenght. Hope you are doing ok.

Andlag

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Re: Somebody please help me...

Post  fairlight10 on Sat Nov 25, 2017 9:55 am

Hello Andlag. Vulvodynia means pain in your vulvar. I also had redness at the beginning and sharp cutting pain in my genital area. When l thought l was misdiagnosed l paid to see a private gynaecologist. He diagnosed vulvar vestibulitis within 10 minutes. This means the pain was in my vestibule. He prescribed 20mgs Nortriptyline which l have been on for 5 1/2 years now. I went back to my gp surgery and told them what was wrong with. Boy did this make them sit up! So maybe if you get no joy from your current gynaecologist this would be another option. Also, there is vulvodynia uk and uk vulva pain society . Just goggle them and they have lots of information on this condition. Print it off and take it when you go on your appointments. Goodluck.

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Re: Somebody please help me...

Post  Andlag on Sat Nov 25, 2017 10:06 am

I actually saw 3 private gynecologists so far, 2 when I was abroad in Norway. One of them told me if I felt something it meant it wasn't in my head. But since I went back home he couldn't continue treating me so I saw another private gynecologist at home and he was the one who brushed it off as nothing and couldn't wait to get me out of the door. Now I'm seeing a gynecologist who's covered by my health insurance and who is also the first woman gynecologist I went to. So far she seemed more thorough and interested so I'm hopeful. I will look into it and do as you say, although I'm not sure if any of my doctors speak english. But maybe I can convince them anyway. Thank you for your support, it really helps to be understood. Take care

Andlag

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Re: Somebody please help me...

Post  sarisbaris on Sun Nov 26, 2017 5:32 am

I am so sorry! THIS IS NOT IN YOUR HEAD! Their reactions make want to swear like a sailor.... I'm so freakin mad right now.

Ok... I had V for 15 years. Yes. A long effing time. And no, it wasn't it my head. I didn't hear the word vulvodynia until the end of my battle. And yes, there was an end to it. I consider myself cured now. Let's start from the beginning. I saw 25+ western/alternative/specialists in California. None. None cured it. A few alternative docs helped but not until I found Anthony William did I have a full understanding of what was going on. I have never met Anthony William. He has a few books and lots of radio shows/blog posts. Basically according to AW, 90% of vaginal burning cases are caused by a strep virus. It is undetectable strain by current medicine. The other cases with and without rashes can be caused by an unknown/currently undetectable strain of shingles. I had both. His strep protocol cured my internal burning and the shingles protocol cured my outer burning/itch rash. UTIs are also caused by a strep virus.

The first thing to do is to learn about these viruses. I would listen read to the sections on UTI, strep, shingles under the necessary reading section. The more you know the faster you will heal but you will understand how to cure it and what to avoid. Listen/read them all. Next to save your sanity, try some of the pain relief medicine I list in the blog.
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

As for the doctors, I saw so so many. I wanted so desperately for them to cure it. When i got older I realized they wanted to cure it too but they just don't know how. In the beginning, they blamed it on me and told me it was in the head. Then when I was screaming at the top of my lungs in the ER, 4 months pregnant they could no longer deny that it was in my head. Listen to what they are NOT saying. And they are not saying a lot. They dedicated their entire lives to medicine, to saving people and they couldn't help a pregnant woman screaming in agony. That's when I realized. it's hard on them too. (Side note: my baby, now toddler is fine). But understand their limitations and they can't tell you what they do not know. I say this not to discourage you but to save you time. It was actually my western doctor who told me to get online and spread my story because she never met someone that was cured. She was a specialist. She was older and said straight to my face that our current medicine has no idea.

Keep me posted. I know his stuff really well. Let me know if you have any questions or if you wanna chat. I fought this battle alone. You don't need to fight this alone.

Sarah
sarisbaris40@gmail.com


Last edited by sarisbaris on Tue Feb 13, 2018 2:21 pm; edited 1 time in total

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Re: Somebody please help me...

Post  sarisbaris on Sun Nov 26, 2017 5:35 am

Also, your pain gets worse around you period (according to Anthony William) because around the time of your cycle 80% of your immune system goes to your lady parts which means your body only has 20% left to deal with ongoing infections. UTIs are infections. 90% of vaginal cases are strep. So listen/read the strep show/info first.

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Pain

Post  Lucci on Sun Nov 26, 2017 5:54 pm

Your gyno is being ridiculous.

If you break your leg, *technically* the pain is in your head. All pain is. With a lot of work - and I mean a lot - you can learn to block out any kind of pain. Your gyno is basically saying that since it's lady pain that they don't understand, it is your job is to learn how to dismiss it.

*Some* pain is psycho-somatic, and definitely therapy to learn how to reduce how pain effects you is never a bad plan for anyone. But you still ABSOLUTELY should find a specialist to treat the underlying cause. I recommend finding a gyno that specializes in Vestibuilits/Vulvodynia/Vaginismus.

The majority of my pain was exactly like you describe, acidic burning. I couldn't ever insert tampons, and for me, sex was impossible - burning (and in my case, also muscle spasms). It sounds a lot like maybe you might have some nerve damage or an excess of nerve growth. But I'm not a doctor. Google or ask in this forum for recommendations of Women's Health doctors, or Vulvodynia in your area. There are many treatments, you are not at the end of the road, you have a slew of solutions ahead of you Smile

Good luck.

Lucci

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Re: Somebody please help me...

Post  Andlag on Mon Nov 27, 2017 10:05 am

Thank you so much everyone! This is the first time since this whole thing started that I felt like I wasn't completely alone. I will look into everything you've written and keep you posted. It is nice to know that someone understands and cares. It gives me hope. Sadly, I'm from Croatia and since it's a small country I haven't found any vulvodynia support groups except for an old forum thread from 2011. Wow sarisbaris, 15 years?! That's horrible but I'm so glad you're well now Smile i can't imagine how hard it must have been. I would love to chat, thank you for leaving your contact!
Lucci, I've read about nerve damage somewhere so I thought about it too. I told my shrink about it, and even though he was convinced that vulvodynia was in my head he prescribed antidepressant that's supposed to block out nerve pain. I'm on it now but so far no help, granted it's only been 5 days. I saw there was a clinic that deals with vulvodynia in Zagreb (the capital city), so if my efforts here don't work I'll be going there. Thank you for yoir support and insight Smile you said your pain "was" like mine, does that mean you're better now? Smile if so, what helped you?

Andlag

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Re: Somebody please help me...

Post  Lucci on Tue Nov 28, 2017 12:37 am

Hey there,

So SSRIs can provide relief in some cases - your psychiatrist is right about that. That said, it is not a cure that works with everyone. Give it some time, see if it provides you any relief, but if it doesn't, there are many more things you can try.

SSRIs did not work for me. Neither did Gabapentin (another drug that effectively blocks some nerve pain - works for many women), a few courses of lidocaine (there are a few ways you can work with that), or another cream (sorry, it's been awhile). I'm a primary VVS girl - I'd never known what it was like not to be pain. I thought it was normal. When I was 18, I finally came to the realization that it was weird I would sob anytime any penetration (tampons, anything) was attempted. It took a long time to find what worked right for me. It's not fair, there is nothing that will ever make it fair for any of us suffering, but I truly do believe that most of us can eventually find a treatment plan that works, or at least significantly helps.

This last year I had a full vestibulectomy (my gynos over the years have all recommended it - I just wanted to try everything possible first before moving the surgery). For reference sake, that was 10 years after first being diagnosed. It's incredible - 95% of all acidic burning/overwhelming pain (acidic is exactly how I always described it) is gone. I feel so so so lucky and so shocked that it doesn't have to hurt. I still have Vaginismus (muscular pain - that could also be something to look into) so have issues with penetration, but am in physical therapy and am making leaps and bounds. I hope to have penetrative sex for the first time sometime in the next 6 mths Smile

I really don't want you to think the take-away is that surgery is the only solution - it's not, and I'm not a doc so you and I may have totally different things going on - but rather to hear that you CAN get through this and you are not alone. And that is not fair, but we're here for you.

Lucci

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Re: Somebody please help me...

Post  Andlag on Tue Nov 28, 2017 6:28 am

It was the same for me, I thought it was normal. I spoke to some of my friends and they said it wasn't like that for them but I just thought my body was different or something. Can't even tell you how many times I had to stop my boyfriend during sex cos I just couldn't take it anymore. And my pleasure during sex was measured by the amount of pain - if it didn't hurt a lot, I was thrilled.

I read that surgery was the last resort but I'm so glad it worked for you Smile i guess I'm only at the beginning of the road with this, I suppose if I didn't get that allergic reaction which made it unbearable, I would've gone through life thinking it was normal. The pain I was in before is nothing compared to this which makes everything else in life seem meaningless..

I am so thankful for having found this forum! I hope your physical therapy goes well, keep me posted! Very Happy

Andlag

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Re: Somebody please help me...

Post  PainBlogger on Sat Dec 09, 2017 5:46 pm

If infection and any visible abnormalities have been ruled out by the gynaecologist you could try to find a pain management specialist. Here in the UK they are anaesthetists who specialise in treating chronic pain conditions. I don't know whether pain clinics are easy to access in Croatia but maybe something to research?

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Re: Somebody please help me...

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