Would love support

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.

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

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

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.

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!

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 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

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?

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

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???

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.

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?

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?

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.

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.

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.

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.

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.

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

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

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.

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.