Another Aussie :)

Hi ladies,

I’m 25, from Australia and after years of knowing I have Vulvodynia I’ve only now plucked up the courage to Google “Vulvodynia Support Group”. I think this has finally been brought on by yet another failing relationship with a man, and the older I get the more I worry that I’ll never find ‘the one’ to live a happy, fulfilled life with. I have booked an appointment with a specialist for May and I’m so scared and sceptical. I’d like to share my story and hopefully make myself feel a bit better, and I’d love to hear if anyone had/has a similar story and if anything has helped you.

I’ve been reading others stories for a couple days now, and I think I stopped crying after about the 9th one! It’s so sad to see so many ladies effected but it’s also very comforting to read the words that I have used all my life too; “broken”, “fix me”, “normal”, “unworthy”, “self conscious”, “unhappy”, “not content with life”. Every time I read these words I smile a little inside, happy knowing that I’ve found people like me and that there is support for us. I’ve never discussed this with anyone but my mum and ex boyfriends, so telling a whole bunch of strangers seems a bit daunting, but I just keep reminding myself that you too are going through the same ordeal.

I have known I’ve had a problem since I was about 8 or 9. I used to wake at night screaming for mum’s help as the pain between my legs was unbearable. It mainly felt like a ripping sensation but also burning, especially after the initial pain struck. I would be put in the shower until I found a little relief and stopped crying, and usually used Canesten to get me back to sleep. Sometimes this wouldn’t work though and I think I just cried myself to sleep most times. This stopped at about age 10 but I still had trouble during the day while walking, bike riding or playing. I remember I had a special hand signal for Dad when we were out on the motorbikes, which meant “I need to go home”. I’m sure my little brother hated me for it, as he missed out on his ride, but I think it annoyed him more that he didn’t know what was going on! Poor kid.

This daily pain stopped at around 12 which I was glad for. But come age 13 and my first period, those scary things called tampons just didn’t want to go in! The doctors put it down to me being young and scared and that was it.

15 came and I got my first ‘real’ boyfriend and I started taking the pill (for mild acne as well as protection). I couldn’t have sex with him and still to this day, I remain a virgin. Wow, that was really hard to write. <fights back tears>

After seeing countless GPs and gynos, and having a simple (and unsuccessful) hymen cutting operation at about 16, I read an article in a girly magazine about a teen who was undergoing Biofeedback. I was happy to find out that my ‘problem’ had a name and was a true condition, and that it wasn’t just all in my head, yayyy! After three years of feeling sceptical about the treatment this doctor provided, I eventually booked two appointments in early 2008. Nothing was achieved though, as he didn’t understand that the tester that he wanted to insert just wasn’t going to fit! So I walked out in tears and haven’t been to a doctor since. And because of my failure to “just give it a go”, my almost 4 year relationship fell apart 2 months later.

I have had 2 short relationships since. This condition makes me feel extremely self conscious, unworthy and nervous around men. At this point in time I feel the only option for me is to live alone forever because I know that every time I start something with a man I know it’s not going to work out. They say they accept you for who you are, and are willing to support you. But no matter how reassuring, I see the look on their faces as they roll away from me in bed, frustrated that they can’t do what a man is built to do. It makes me sick, mad at myself and makes me feel stupid for even thinking that things could work out between us.

I really hope that this appointment in May will be the start of something good. I have read an article on this site about the 6 different operations for Vestibulitis sufferers. They say there’s a 50% success rate but sometimes the condition can be worsened. After reading many stories, I’ve realised that there’s a difference between Vulvodynia and Vulva Vestibulitis Syndrome, right? I did have Vulvodynia symptoms when younger, with the burning sensation, but now it seems I only suffer from pain on contact- VVS. Please correct me if I’m wrong. So what I’m afraid of is having the operation and being one of the unlucky ones whose situation worsens, along with having no improvements.

I’ve read on a health site that there can be a connection between taking the pill and VVS. Does anyone know more about this? I’ve read about ladies who start getting symptoms while on the pill so stop taking it and return to normal. Also, there’s an estrogen ring that can be inserted to get your hormones back in balance, and this is been known to have positive effects. I’d like to find out more about this if anyone has any info, thanks.

Again, it is so good to meet girls like me. Girls that feel the same way about relationships, sex and life. Girls that use ‘my’ language. And girls that have had success with treatment. After 12 long years, for the first time I am feeling just a little bit of hope. Thank you ladies.

Wow Shae I bet it feels good to get that out! I'm so sorry you have been through so much pain and had such a tough time. This shite is so unfair!

Welcome!

Vulvodynia means vulval pain so that's the general umbrella that all this crap comes under.

I don't know where to start. I have generalised unprovoked vulvodynia which is pain all the time. There are different types of pain, with varying degrees of intensity. I'm currently doing physio, having therapy and trying for a healthier lifestyle. That's a work in progress. No sugar ahhhh!!! I've dabbled with drugs, they didn't work out for me.

Have you ever been assessed by a physio? It's helpful to see what your pelvic floor is doing. Have you got a therapist? That's highly recommended, we can't carry all this around. Have you got friends you can share with? If it's awkward sharing everything just give as much as you are comfortable with, like you have a pelvic pain condition. Have you considered a vulval clinic? You should find one at any major hospital. I found my specialist through a vulval clinic. May is such a long way off

Relationships are tough. Don't write off your whole life. We're hoping some clever clogs has some inspiration any time soon. In the meantime it's a quest for answers, coming on here to talk about good days and bad. Oh we are on FB as well, it's a private group so doesn't post to your wall. We're all fairly normal folk... well most of us, dealing with a fairly unusual condition.

Take care of yourself
Vicki

oooooo how u cursed then!! I was writing a long old reply and my battery died on my laptop and lost the lot! grrrrrrrrr

ok so in a nutshell...

we are all here for you Shae. It sounds like you have had this for so long now but believe me you are not alone and on here and the facebook group (secret one dont worry!) there is always someone there to talk to. It helps on facebook that we are all scattered around the world so different time zones! Ask Sebby to add you to facebook group if you like. We do tend to have a giggle on there too more so....if you didnt laugh you'd cry, and it really does make my day better. In the kindest possible way....these girls are nutjobs! tehee!

I used to/still am really shy about this condition but have had to force myself to tell people. the more people i have told the easier it gets!!

hopefully youve had a good read on here (from your crying response i gather u have). It is so so sad and such an awful thing to have. Its never how i expected my life to turn out in a million years. But be assured that there is always someone to talk to on here and facebook.

hopefully you will make some lasting friendships on here too, i have and its such a blessing...something ace has come from such a dire situation.

thinking of u

naomi (Nai) xxxxxxx

Hi Shae and welcome. You're right there is a difference between vulvar vestibulitis and vulvodynia, vulvar vestibulitis is pain on contact. I'm the other way round to you and started with vulvar vestibulitis a couple of years ago which then erupted into general unprovoked vulvodynia after I had a UTI a year ago. The pill can sometimes be a feature but stopping it should allow hormones to normalise so if it doesn't make a difference when it's stopped it's probably not the pill.

I've tried oestrogen and it didn't work for me, some women get alot of relief from it but it really depends what your skin is doing. If your skin is thin and tears oestrogen can be very helpful but if, like me, it's just badly inflamed then usually not so helpful. It's something you could try though if you wanted to.

I agree with Mouse that you need to see a physio, tight pelvic floors play a big part in this and it's worth getting everything in and around the pelvis checked out. I would definitely hold off on the surgery until you've tried less invasive methods, if you have pelvic floor issues and have the surgery you will still need to sort them out after so you may as well deal with them first to see if that does the trick.

I completely understand how you feel about thinking you'll be alone for the rest of your life, I think I will be too. My partner of 13 years dumped me 7 months into this problem as it was "one health problem too many" and "holding him back" so I'm not going to put myself in that position again. I also have Hypermobility Syndrome and Fibromyalgia which I'm positive are related as my pelvic joints are badly affected. For now I'm not thinking about men I'm just trying to find a way to help myself. I'm on Ami 50mg a night which hasn't really helped and Lyrica at the moment, the Lyrica is a new addition and I haven't managed to get to the dose recommended as yet so time will tell.

The order things usually get done in is rule out infections and skin conditions then take pain medication and get physio and see where that leaves you. You've come to the right place to share though, we talk about anything and everything on here and there are some great girls on this forum.

Hey Shae welcome!

You have found the best forum for this terrible V thing. It has saved me in my most darkest moments! Just knowing that there are people out there who fully realize what you are going through is a blessing.

Its great that you will be seeing a specialist in a couple of months. My appointment is in roughly 42 days (countdown) and Im both optimistic, yet cautious...not knowing what to expect. And also having to re-tell my story and background....and more exams and more of this and that...(exhausting)

I believe that the most crucial component of this whole thing is to stay optimistic, and be as strong mentally and emotionally as you can.

I also believe that our bodies have the potential to heal themselves....but that its up to us to do the work...like what some have mentioned...PT is probably something to look into...as the pain is causing our pelvic floor muscles to tighten and further constrict blood vessels and nerves downthere.

I have tried several things in a relatiely short span...Cipralex (bad bc no sleep)...St Johns Wort (just made me mellow out a bit)....hydrocortisone cream (not a good idea)....now Im on Amitriptyline 10mg...and trying dermamed, an alternative to cortisone.

Anyways....you will find a lot of info and support on here!

Take care
Noni

Hi Shae and welcome to the forum x

Im Sebby the Admin. I have had Vaginismus (tightening of the vaginial muscles) since I was 13, well I found out when I tried to use tampons and that was a no no. I also beleive looking back I had a mild form of VVS as I was in pain during contact such as penetration, tampons, examinations etc. It did make sex difficult and the majority of the time intercourse was painful or uncomfortable on better occasions. This too has effected my relationships to the point I gave up and thought stuff sex im sick of it hurting! I have been single for nearly 2 years (since I got Vulvodynia, which is pain all the time now).

I too fear being alone for the rest of my life and you may have seen my post regarding this and another members post who is currently trying online dating after 6 years of being single. As difficult as it is im trying to remain positive in this and when Im feeling more mentally strong I may try dating again, if it doesnt work out then at least I tried, if it does then fantastic..who knows what the future holds

In terms of treatments, I think the physio is a great idea like the girls said. Also have you tried any pain meds such as anticonvulsants or amitriptalyne? sorry if im a crap speller! Im trying Pregabalin (lyrica) at the moment and its early days yet so am wating to see.

I am also going to try using dilators again once I see if the lyrica works to help get me used to something being in my vagina. I started and was still on the smallest and thinnest one. A physio should be able to introduce you to this. You would need to start with a very small thin one. Are you able to get one finger inside?

So focus on pain control..find some meds and see if they can help. Then rehabilitate the whole pelvic area to get you looser and less tight.

Good luck and let us know how you get on

If you wish to join our secret facebook group then inbox me in this forum

Wow, thanks everyone for your kind words! It’s so good knowing I have support and people who understand.

No, I haven’t been assessed by a physio, or seen a therapist. I will talk through this with the doctor in May.

I’m not so sure on the FB group... do people see that you’re a member? I’ve been paranoid all my life about my big secret getting out to the people I know, so joining a group (even a secret one) would be suicide to me!

So my condition could change and I could get acute, constant pain? Geeze, this info is helpful but at the same time it’s filling me with fear. I honestly don’t think I could deal with anything worse than what I have, I just couldn’t do it. I feel so awful for the ladies who have pain all the time, I didn’t know it was possible until I found this site. I’m really, really concerned now. Should I start taking precautions to prevent it such as no sugar, yeast, coloured undies? Or is it going to happen anyway. This is all too much...

I’m reluctant to try drugs. I’m not a fan of them, I don’t like the thought of something so powerful and unnatural entering my body and changing me. I’ve read some of the side effects of the drugs mentioned and they scare the crapper out of me. If I had pain constantly it may be a different story but for now I can deal with not having sex and using tampons.

No, I can’t even insert one finger. Every time I plan to try, even when aroused, I just freeze up. I’m not sure if it’s mainly my mind telling me I can’t do it, cos that’s what I’ve believe for the last 12 years. I just don’t feel comfortable doing it myself, it makes me anxious, I tense up and forget to breath (usually NOT a good thing!) and then usually start crying. HOWEVER in saying this, two days ago (Valentine’s Day, how ironic) while being intimate with my partner , he was able to insert his rude finger half way. I didn’t believe him at first because I have never ever achieved anything close to this, and although I was squirming like a worm trying to deal with the uncomfortableness, I was kind of happy in a way, and totally shocked. He said I was quite normal sized just inside but he could feel a difference (compared to other women) in the band of muscle upon entering. He wasn’t able to try again as I started crying uncontrollably, I’m not really sure why...

I have had lower back pain most of my life, on and off depending on the job I have. And the reason I’ve stayed on the pill is because if something comes up on the week that I am due and I can’t afford to have my period, I can skip it. And it’s also reassuring to know exactly what day it comes on. I believe it can vary when you aren’t on the pill? I wouldn’t know, I have been on it for 10 years now so I don’t know what normal is. I’d hate to get my period unexpected on a day I’m wearing white!

Thanks so much for your replies.

Hi Shae, don't panic!!!

While there are some commonalities most peoples experience of this weird world is fairly unique to them. I haven't found anyone with the exact same shizzer as me.

Try not to be overwhelmed. The thing that helps me the most if having someone to talk too. I think getting mentally strong is essential. Would you consider a therapist? Unloading all of your crap is really empowering. I look forward to seeing my therapy chick way too much!

Do you have UTIs? The yeast diet is aimed at those little nasties. I do the no sugar to lower the acid and hopefully get rid of the burn. Who knows if that will work but sugar is generally bad for everything anyway.

I'm also uncomfortable with drugs. I tried a couple for a few months and couldn't continue. It really takes a lot longer than that to do any good but I found I couldn't function. I wouldn't discourage anyone from trying them though, they do work for some people.

Check out the link below and see if that fits your symptoms. Oh and the FB group is completely secret, there is another V group that isn't. Nothing will post to your wall and no one can join without Sebby adding them.

http://www.vaginismus.com/vaginismus-treatment

My other favourite thing is meditation =) That scares a lot of people but it really helps. I do mindfulness most days. It can be as simple as taking a deep breath.

We've probably thrown too much info at you, just take your time!

Take care
Vicki

I second that Shae...please try to not to panic.

Like Mouse says, we are all different and I'm similar to some and not to others.

Try to make some notes for ideas on what you could suggest to ur doctor...similar treatments and symptoms. We'll be here so ur not on ur own.

Can ur partner be involved? I made the mistake of trying to protect him and it backfired...try to keep him in the loop.

hugs xxxxxx and keep in touch xxxx

I agree with the others, try not to panic it will get worse just because mine did. Dealing with things now should head that off at the pass. My problem was I ignored the vulvar vestibulitis because it didn't affect me except for a few seconds during sex and if I could go back I'd get it sorted out promptly. I don't bother about if my underwear is coloured or not but it is always 100% cotton.

I came off the pill at 35 (I'm a naughty smoker and they confiscated it)and hve found a couple of days before my period I get very slight spotting so it doesn't come as a total surprise but we're all different.

If you have lower back pain I think physio is the way to go forward, I have terrible pain in my back from pelvic joint problems and I'm pretty sure it's what caused the V. I like us all calling it V it saves me having to type the whole word!

Like the girls said everyone has a unique experience with this there are some similarities and some differences. Just because you have VVS does not mean that it will develop into constant pain. If this was the inevitable course of the condition I would expect this to be in the literature and I have not read this.

In terms of helping yourself along the way there is nothing wrong with taking steps to minimize pain or yeast infections which just lend more discomfort. I only wear white cotton knickers, no dyes at all. I mostly shower down with just water over the vulva and if I do sit in the bath it is rarely and with no soap at all. I also wash my undies on just 90 degress to boil out the bacteria but with no powder. Dont wear undies at night and go commando as often as possible. This allows the skin to breathe and to minimize the risk of the overgrowth of yeast. Eat healthy, cut down on sugars (this one im not so good at) I do take acidolphilus which is a pill form of the good bacteria you find in live yougurt.

Do look at the site that Mouse put the link in for. If you are so tight then your muscles are tightening up involuntary with the anxiety of possible pain. They have a kit and dilators on there to help.

Its a great achivement that he could get half a finger inside, it means things are moving forward. Do practise when you feel able yourself. You can start as slowly as you like. the finger has 3 knuckles. The first at the bottom of the tip of the finger. The second where the fingers bend in the middle and the third at the bottom of the finger. Practise just with the tip until you can manage this...dont pressure or push yourself to much. And dont to anything without a lot of lube! Even any sort of foreplay with your partner....lube lube and more lube..try something that is comfortable for you and doesnt irritate your skin.

http://sylk.co.uk/ - I have heard of this one that is paraben free and will try some myself

Dont give up and let us know how you get on with treatment

Hi again

No I haven’t ever been effected by a UTI or thrush.

I’ve had a look at that Vaginismus site and it sounds familiar, but aren’t the symptoms of VVS the same? Pain on contact? I’m confused now!

My relationship with my partner isn’t one that is going to last. We’ve only been together 3 months and our personalities clash (apparently) so he’s finding it hard to see a future with me. Therefore I don’t think it’s fair to him that I should want him to be a part of my healing process. He says he’s supportive but I feel if we do work together through this, things are just going to get more complicated and I’ll hurt even more than I am now when he eventually does end what we have. The only reason I feel we’re still together is because I live in his house, I moved in as a housemate and have nowhere else to go. It’s hard to keep away from someone and forget about them when you see them every day. So it makes it really hard for me to work through this problem, knowing that he’s only really here for me physically and not emotionally and for the long term. As I’ve mentioned, I’m getting to a point where a single life sounds easier than fighting this battle.

Hi Shae,

My specialist said that all of these conditions fall under the name vulvodynia (vulval pain) and there is a move by the ISSVD to then categorise them as generalised and localised ie pain all the time and pain on contact. Some people have a combination. I wouldn't get too carried away with the label. It's just shit whatever they call it =)

This is the information she gave me.

https://netforum.avectra.com/eweb/DynamicPage.aspx?Site=ISSVD&WebCode=ArticleResult&FromSearchControl=Yes&FromSearchControl=Yes

https://netforum.avectra.com/temp/ClientImages/ISSVD/4c9d4ec4-2e90-4a81-9a36-8467863002f4.pdf

I think most of us have come to the conclusion that putting ourselves first is the way forward.

Vicki

Shae I can totally relate to your living situation, I'm still having to share the house with my ex because we have a joint mortgage and I have nowhere else to go either which doesn't help much. We're selling the house in the summer and I'll have to figure out a way I can rent somewhere but without a job and minimal benefits coming in (plus the Tories picking on us poor folk) it's going to be an enormous struggle but it needs to be done. It's very hard to share a house with someone you've split up with and arguments are going to happen plus I have to watch my ex ringing, texting and talking online to his new squeeze and having regular dirty weekends away etc. Not great.

And like the others said don't get too hung up with the label, it all comes under the umbrella of vulval pain so it's not vastly important to pinpoint exactly, alot of us have a couple of problems rather than just one clear cut defined condition. As Mouse said it's still shit whatever it is!

I must admitt I have become very cynical with men. I think I would be a right bitch if I was dating lol any bloody moaning and shite behaviour from them and i'd cuss them good!

So it wouldnt just be my moody vulvar he'd have to put up with!

Im never gonna put a man first in my life..never not after all the crap I put up with in my last relationship

Well said Sebby! Men are so low on my list of priorities they don't even feature anymore, I'm comfortable with the idea of being without a man for good now, let's face it most of them aren't worth having when you've got them! I'd like to recover just for me so I can do normal daily things without pain (isn't going to happen with all my issues but no harm in dreaming!). I could cope if I didn't have the constant pain, when it was just a penetration thing I wasn't really bothered by it. Anyway, we'll just have to see what happens. My pelvic floor is pretty bad at the moment, I'm currently grieving really hard and finding I can't stop tensing it up and it's definitely increased my pain.

Geeze Sarah, I'm sorry to hear of your home life. That's not fair of him at all to be putting you through all of that. I hope things get better for you soon.

Thanks Shae, It isn't easy, I think I'm probably in the worst place in my life I've ever been before but I'm trying to find some way to move in the summer when he makes me sell the house so he can move in with his new squeeze.

Owwww Sarah that's not fair. I know we've had this talk but why won't he move out ... besides being an asshole?

My cousin is currently living with her alcoholic partner until their house sells. Amazing how life turns out. This guy has lost a 6 figure income because of his drinking and now does that all day. He fell off their balcony last week unfortunately not on his head but didn't realise until he sobered up the next day that he'd broken his shoulder. They figured out the attraction of standing on the ledge was he stored his booze in a roof cavity. 12 empty gin bottle up there!!! I don't know how she hasn't harmed him.

It's a particularly cruel thing he's doing to you Sarah. I hope you have things that make you happy. You have a crazy bunch of women obsessed with their vulvas to take care of you =)

xx.

He won't move out because he has money tied up in the house and I can't for the same reason. It's awful and this week I lost someone I adored so I feel even worse than usual at the moment.

It is lovely to have all you vulva obsessed ladies to talk to, thanks girls. x

Awww Sarah we are here for you xx

Do you not have a facebook account? Then you can also join our secret facebook group

I do think its sooooo cruel what he is doing..why dont he just feck off and leave you be to concentrate on your treatement!

I hope you are making his stay miserable, Id be such a nagging irritating bitch...

Or at least pee in the milk.

hahahahaaaaa ohh Mouse you just crease me up!!!

also, brush the toilet with his toothbrush and itching powder in his bed teheeeeee!

Laxatives in his tea!!

True story! I know someone who did that. She's from the UK though, you know what those girls are like