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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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.

sarisbaris

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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...

Post  Andlag on Thu Mar 22, 2018 9:32 am

Hey guys, i don't know if anyone is still reading this, it's been a few months, but i've been trying to find someone who could help me. I went to see another gynecologists and she did pap smear and swabs which showed inflammation with bacteria called klebsiella, she tried treating me with 2 antibiotics and a lot of vaginal creams etc. All they did was remove the redness but the pain remained. Finally she told me that my test results are considered normal and that she didn't even have to treat me since inflammations in women are a common thing. She told me to get used to the pain and that "pain is not a medical term". She also said to feel free to look for a second opinion but that everyone would just tell me the same thing. I refused to believe her and saw another gynecologist today who said that she was right and that im "as pink as a nun" down there and there are no visible signs for him to treat. All my lab results according to them are fine, ultrasound is fine and im "healthy". I don't know what else to do, i'm desperate..

Andlag

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Re: Somebody please help me...

Post  sarisbaris on Thu Mar 22, 2018 7:43 pm

I'm so sorry you're in pain. I've been there. The docs can't help or at least in my experience they could never helped me. I went to so many doctors and specialists and they had no idea.

But that's ok. At least you know it's not something life threatening. If you read my previous post, I am cured and it wasn't by accident. I followed the protocol by Anthony William and it cured the burning and now I live a normal healthy life with a happy vagina Wink

Here's my blog. If you are burning right now go to the grocery store and get celery, cucumber, cilantro, flat parsley and lemon (only if lemon doesn't irritate you) throw it in a blender. Then strain it through a nut bag or mesh cloth. This would always help my pain. All these things are incredibly anti-inflammatory. You should drink this a few times a day while you are in active pain.
http://www.medicalmedium.com/blog/celery-juice-two-ways

Next, read my blog. http://myvulvodyniacure.blogspot.com/
Listen/read the posts about strep and shingles under necessary reading. 90% of vaginal burning cases are caused by strep.

If you find all of this overwhelming (it's hard to see clearly when you're in pain) and would like to talk, just email me the information below. That way when we talk I'll have the basics. I have been coaching other women to help them get started on the protocol. I can help you too. I am coaching a woman in London and we just use google voice. I live in California. I'm not practitioner and I don't charge for these calls. I honestly just want to help. I had to do it almost entirely alone and it was a nightmare.

Email me the following:
Health history - include vaginal issues along with other issues that you don't think are related (they are all related)
Are you on any prescription medication?
What's your current diet? What do you generally eat for breakfast, lunch, dinner, snacks, drinks?
Do you drink filtered water?

sarisbaris40@gmail.com

Sending hugs and prayers!
Sarah

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Re: Somebody please help me...

Post  Lucci on Sun Apr 01, 2018 12:47 am

I'm so sorry to hear what happened at your recent appointments. I'm here for you to vent to if you want. It is possible to have a medical condition without having visible symptoms - my vestibulitis never looked red or painful but was still real and was still helped by treatment. Pain is a medical term, it is a symptom, and it can be treated (lidocaine, ssris, etc), as can the underlying cause. It is possible to have medical conditions present themselves as a result of bacteria - even if the "bad" bacteria is treated and resolved, you can still have things be off-kilter. Were either of the gynos specialists in vulvodynia? Is there any indication of muscle spasm or is it all surface level pain (not that that makes it feel better).

Hang in there.

Lucci

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Re: Somebody please help me...

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