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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 …

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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 …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Would love support

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Would love support

Post  katn7 on Thu Oct 02, 2014 10:04 pm

I have been living with vulvodynia for a long as I can remember. I didn't get officially diagnosed until I was 17 and it has been getting worse ever since. I am 19 now and unable to have sex with my boyfriend of 4 years. I also suffer from endometriosis since I was in my early teens so I've been living with pelvic pain for a long time now. No one really understands how vulvodynia effects you unless you are living with it, so I joined to not feel so alone anymore. Thank you.

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Re: Would love support

Post  Sparkle on Fri Oct 03, 2014 12:49 pm

I just joined today but have been reading the threads for a few weeks now. I got diagnosed yesterday. But I have had it for around a year. What one do you have? I have provoked vestibuler vulvadynia. I'm 29 and I really feel for you getting it so Young

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Re: Would love support

Post  Sparkle on Fri Oct 03, 2014 12:52 pm

All of my message didn't get posted. Weird. Anyways I was saying that I'm at the start of my treatment and you have to try and stay positive that something will work for you. Are u taking anything for it? Or any cremes? The most heartbreaking thing about this is you worry that you may never have a normal sex life again. How is your bf about all this? X

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Re: Would love support

Post  katn7 on Fri Oct 03, 2014 3:05 pm

Thank you for replying, I'm sorry this came on so suddenly for you. I have dysesthetic vulvodynia. I was just at the doctor yesterday because I have tried a lot of things and it continues to get worse so he suggested a cream so I hope that helps. My boyfriend is amazing, he tries his best to understand and although I'm sure he's frustrated like I am he rarely shows it. I'm lucky to have him but it is still rough.

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Re: Would love support

Post  Sparkle on Fri Oct 03, 2014 3:16 pm

What does dysesthetic mean? What are your symptoms?

Thanks that's very sweet of you to say and in sorry to
hear that nothing seems to be helping you :-( hopefully this creme might offer help. What is it? And also what have you tried?
Ive been told to get a creme that has 5% lidocaine and 2% amitriptyline in it but I got to get it specially made. I'm going to take calcium citrate and I go back in a month to see if I have made progress.

Your BF sounds lovely and it's good your have his support. Have you tried using lidocaine and then having sex? This is what my doc suggested I do.
I'm at beginning of my treatment and I'm scared tbh. I feel so uncertain about future and if this will get better or worse. I can see how u feel and I can sympathise with you. This is horrible condition and no1 should have to go through it!

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Re: Would love support

Post  sailor_moon on Mon Oct 06, 2014 10:43 am

Hi

Another young person on the vulvodynia band-wagon. I'm only 27 so I feel ya!

Another woman on this forum suffered both endo and vulvodynia together. She calls herself Alana3 I think. Chat to her, she has had a very long journey but is finally having success Smile she is a great source of info, she knows her stuff.

Do you mind me asking do you have any other symptoms? Are you generally in good health otherwise? Do your symptoms worsen at certain times of the month?

What treatment have you tried?

You have both certainly come to the right place. I joined this forum when I was at an extremely low point in my life, and it saved my sanity to know I wasn't alone in this.x
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Re: Would love support

Post  katn7 on Mon Oct 06, 2014 9:31 pm

Thank you.
My symtoms are that I just feel pain when trying to have intercourse or anything like that. I'm unable to have sex at all and I haven't for a long time. I have tried a few different things, I tried physio and acupuncture which didn't help a lot and it got to expensive then I got dialaters to help so I have been using that but it's really painful so I don't do it often and a little while ago my gyno suggested trying a numbing cream and then using the dialaters but it didn't really help. It's frustrating. What have you tried?

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Re: Would love support

Post  katn7 on Mon Oct 06, 2014 9:35 pm

And to answer the other question from sparkle I tried lydocaine and it was still too painful.

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Re: Would love support

Post  Sparkle on Mon Oct 06, 2014 10:42 pm


I've tried the lidocaine and while it numbs a bit I don't feel like it numbs it enough I still feel pain in the vestibular area. I haven't actually tried to have sex with it though.
It's really horrible not be able to be intimate with your bf I no it can take its toll.. Do your find its too sensitive and painful down Ther to do anything at all?

I think you should try and stick with the dialators I have heard really good things about them so maybe try and work through it as much as u can. It's all about getting your body used to having somthing there especially if maybe your muscles are contracting cos of pain that will help strech them. This is all stuff I have read tho.

The longest me and my BF couldn't have sex was for a few months and it hasn't been pain free for a year or so now I get burning every time we try and when it's at its worse it impossible to do anything coa of pain but I do worry that this will get worse and longer in between as I only got this a year ago. It's started to bleed now afterwards which is worrying. It appears to look normal down Ther and if it's a nerve issue why does it bleed???

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Re: Would love support

Post  katn7 on Mon Oct 06, 2014 11:52 pm

I will try and stick through it because I agree that it can help. I'm sorry to hear about that. I understand, my boyfriend and I haven't been able to have sec in 2 and a half years. It's bled for me too before and I don't know why. Not a lot of blood just a little. With my edo I don't think I'd be able to have sex even if a didn't have vulvodynia. I had to get a Pap test recently at the gyno and it was the most painful experience because of both endo and volvodynia. I burst into tears and it hurt for days after, felt like really terrible period cramps. This is extremely rough.

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Re: Would love support

Post  Sparkle on Tue Oct 07, 2014 9:47 am

2 and a half years is a long time. I was getting upaet when it had been a few months so I can only imagine how hard it is for you. I feel so much better tho when I talk to ppl on here so I know we are not going through it alone.

So what is endo? Not sure I know what this is? It's rough you have 2 things to deal with.

If you can do other intimate stuff with your bf other then sex I would suggest to still try and be intimate in other ways. I was reading a post on here yesterday from a wile back and it made me see that even if you can't have sex Ther is tons of sexual ways you can still be together. It's so hard though when you can't...I really feel for you and hope someday they will find out what works for you so you can start to heal.

that test sounds horrible must have been difficult for you. I haven't had a smear test since having vulvadynia slightly worried about how that will feel as the qtip test I had last week to diagnose me was agony.
I had a low day yesterday and felt tearful all day but your not alone hun...every single women on here is going through the same thing so can give u a sympathetic ear wen u feel low and Thers tons of tip and support on here. Have you read through the forum yet?

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Re: Would love support

Post  katn7 on Tue Oct 07, 2014 11:33 pm

Thank you. Endo is short for endometriosis which is when the cells that line the endometrium (lining of the uterus) grow outside the unterus. Extremely painful. For me most of it grows on my left ovary, so I can't put much pressure on that side without a lot of pain. I'm on a medication to stop my periods because that's when it grows. Period cramps are too painful to endure anyway. Can't walk with the pain and before I was diagnosed I blacked out from it. It's awful. I've had one surgery and I'm going to have to have another one when I want to have children so for now I just stay on my meds.

My boyfriend and I are intamite in other ways but I've found dealing with this my sex drive hasn't been the same. Do you feel that way?

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Re: Would love support

Post  Sparkle on Wed Oct 08, 2014 11:26 am

God that sounds like a nightmare for you. You've been through so much at such a young age. To have both of these things must be a struggle everyday. Well I don't mind listening when it's too much and you need a chat :-) how has today been pain wise for you? Do u work?

It hasn't effexted my sex drive much. I still want sex so I get frustrated when I can't cos of the pain and I feel guilty but my BF is very supportive like yours. I've got used to not having sex as much as we used to cos of the pain it not always possible and when we do it burns the whole way through now, somtines the pain on my vestibular area is too much and it's completely impossible. BUt I still want to do "stuff" I guess in way that I didn't relise till now it has affected my sex drive. I think it's bcos other stuff takes more effort then sex. We are still intimate through the week but it does make me sad not the way we used to be. Every time I think about it I get sad. I miss pain free sex so much.

I walked out of work yesterday. I wore stupid trousers that where too tight and I had an ache Ther all day. Work was stressful in end I just got up and left in tears. Bkoss wasn't pleased but I'm too embarwased to tell him what's up.

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Re: Would love support

Post  katn7 on Thu Oct 09, 2014 10:10 pm

Thank you for that it means a lot. Pain was okay today I only had a little cramping. I do work so I understand how it feels to be in pain while working, sorry to hear that. It's good that you have a supportive boyfriend because there are lots of guys out there that wouldn't be.

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Re: Would love support

Post  Cbrimer28 on Fri Oct 10, 2014 1:44 am

Hey everybody, I literally just joined on here, but I've been reading over it. I was drawn to your story because you're so young. I was diagnosed at age 17 with vestibulitis, the unprovoked kind, bc when they found it I had never had sex or even anything close. I went to doctor after doctor and did every treatment you could imagine from creams to antidepressants to exercises... Nothing worked. I finally found a doctor who told me the only way my particular kind could be healed was through surgery. So that's what I had. A bilateral vestibulectomy that took me almost a year to completely recover from. I was symptom free for a while, I thought I was healed forever. Until July 4th when I got a bad UTI and things haven't been right down there since. Saw a different gynecologist today and he confirmed my fear, they didn't get it all. My pain is now coming from near the urethra. Every time I pee it literally feels like acid. Sex is impossible and I'm recently engaged. I worry about the strain it's going to put on my relationship. He's a great guy but I feel so bad. And I feel for you, I really do. It's quite a battle and I feel like no one around me really gets it. I wish you the best of luck. All I can say is be very direct with your doctor, don't let them treat you like a guinea pig for years. It's your health and your well being.

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Re: Would love support

Post  Sparkle on Fri Oct 10, 2014 8:59 am

Morning girls,

Katn7, Glad today hasn't been to bad for you. And yes we are lucky we both have bf who support us so Ther is hope wen u look around and see a support network. I've been using vitamin e oil all this week and although it doesn't take away pain it's soothing. Have u tried that?

Hi Cbrimber28,
I'm sorry to hear your surgery hasn't work that must be disheartening. Is Ther anyrhinf that can do for your uretha pain? Maybe you have an infection Ther? I have seen aome post with women who have this too. Have a look around the forum and hopefully thwrs is some advice on Ther you can take away with you.

I have a different type to you both. Mine is provoked pain so I only get pain through intercourse or touch or in a bad day I can get pain from wearing too tight trousers or If somthing irritates it. I So worry that bc I ahve only has this for a year it will get worse before it gets better but I'm goi f to keep up wih advice from This forum and hope I find somthing one day to take away my pain. It's hard tho so days are worse then others. I want my old life back.

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Re: Would love support

Post  Sparkle on Fri Oct 10, 2014 9:04 am

I've started using vani soap and aqueous creme to wash with and not washing hair in shower or bath. I don't know if it's obvious to do that but it seems to be helping a bit.

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Re: Would love support

Post  katn7 on Fri Oct 10, 2014 3:42 pm

I'm sorry to hear that all that has happened to you Sad I really hope you can find another treatment soon. No one should have to live with a pain like that.

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Re: Would love support

Post  EverythingIsDifferentNow on Sat Oct 25, 2014 5:38 pm

Perform pelvic floor exercises at home, and you will see a difference

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Re: Would love support

Post  mrs.optimistic on Thu May 14, 2015 8:26 pm

You sound just like me! I'm 20 and I've had vulvodynia since I was 17. I've been with my husband going on 5 years and I feel your pain. Sex is just out of the question right now.

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Re: Would love support

Post  mrs.optimistic on Thu May 14, 2015 9:52 pm

You sound just like me! I'm 20 and I've had vulvodynia since I was 17. I've been with my husband going on 5 years and I feel your pain. Sex is just out of the question right now.

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Re: Would love support

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