want to rewind the clock..anyone help??

hi all

vulvodynia has totally ruined my life (24/7 chronic burning pain etc etc bla bla im sick of hearing myself explain lol!!) and as I am stuck in the house everyday (please don't tell me to go out and do stuff..I can't because my pain is that bad) I am becoming obsessed with thinking about what I would do differently if I could rewind time to 4 years ago when it started..I just keep thinking why the hell did you go on the pill, (I'm sure this was the start to my troubles and I literally don't stop thinking to myself 'you shouldn't have gone on it') and thinking things like what my life could be like if I hadn't. It's getting ridiculous as its not possible to turn back the clock but I just can't stop obsessing over what could have been!

also, because I cannot have sex or do anything intimate and have been with my boyfriend for over 4 years, every single day and night all i can think about is has he cheated on me? I mean there has been tiny things that annoyed me in the past..but its like since my pain has got so bad I just can't stop thinking omg hes cheated on me, when realistically he probably hasn't, but im like really obsessing over this too.

these 2 thoughts of wanting to rewind time and that my boyfriend has cheated because of my condition are SOOOOO IRRATIONAL and RIDICULOUS but they just take over my brain! I just dont know what to do I try watching tv, reading, cleaning, selling stuff on ebay ANYTHING to take my mind off it but nothing works (im pretty limited for what i can do in my house btw!!) and the reason im posting this on here was because these things never used to bother me until my pain got to be the 24/7 hell that it is..so im pretty damn sure that the pain has fucked me up in the head and im worried im going to go crazy quite honestly!

i know this post probably sounds completely ridiculous but these are a couple of ways that vulvodynia is affecting me psychologically and its really taking its toll on me now .

from a very sleep deprived and fed up pain sufferer!!!!!!!!! xx

Hi Smile,

First off, I’m so sorry to hear about how sucky things are for you Though I do at times suffer excruciating pain, there are times when I don’t, and I can’t imagine what it must be like to have that all the time without respite. My heart goes out to you.

Pain does fuck you up in the head, no doubt about it. After a particularly bad flare up I developed anxiety & panic attacks. Part of that was I had something called “intrusive thoughts”…where your mind latches on to some horrible & distressing thought and literally won’t let it go. I mention it cos it sounds kind of similar to what you’re experiencing. I think that when you don’t have pain, if nasty thoughts go through your head you can usually dismiss them pretty easily, but when you’re worn down by pain your mental defences are gone and your mind just gives into them and loops them over & over.

I don’t think you’ll go crazy but I do think you might be suffering some anxiety and really, who could blame you.

Personally I went on a 3 month course of citalopram and that helped bigtime. It also made me sleep loads, which I really needed at the time. Plus I read “Self help for your nerves” by Claire Weekes, which helped me to understand the anxiety response.

I hope things pick up for you x

Hi ButterflyLiz

Thank you, I just feel like I never get a break from it, it's very hard, I'm glad to hear that you don't have the really bad pain all the time though.

Yeah it does sound like I am having these 'intrusive thoughts' that you mention, that totally makes sense because its like everything around you kinda disappears and that thought completely takes over again and again.

I think I definitely need to go on something too, its just a matter of even getting myself to go to the doctors and explain it all time and time again. I really should though I think! I may have a look for that book and see if it helps me to stop the thoughts. Shame there isn't an 'off' button for these things huh!

Thanks for your help I really appreciate it, nice to know someone understands what I mean about my crazy thoughts! x

My heart goes out to you. My pain isn't always a level 10 pain, I couldn't imagine living with pain like that every day.

Like Butterflyliz, I also started having really bad anxiety. I'm a graduate student in mental health so I used ALL the knowledge I'd learned to keep myself grounded before I went completely off the deep end.

Talking to people about it has helped tremendously; here on the forum, and IRL. Get those feelings out! Don't pretend you're okay when you're not (I don't know if that's how you act, I just know that for a long time I faked it).

I also worry that my boyfriend will/has cheat(ed). He's very sexual (I know, all men are, but he takes a view on it that I've never come across before), and I know that the lack of sex is really effecting him. There are days when he's very cranky about it, not blameful, just cranky that we can't have a normal sex life. I'm telling you this because communication is key. That's the only thing keeping us together right now, even though it's so uncomfortable to talk about for both of us. We had reached a point where we had stopped kissing, hugging, cuddling, everything... we were both feeling terrible and blaming ourselves for the situation. He thought he had somehow broken me, and I felt like i was ruining his life. We TALKED about it. I shared my fears of him cheating, told him how everynight I would lie in bed and wonder who was in his bed and if I really wanted to know. I shared how much i missed him, the sex we used to have, even just the kissing and being held, and how that was effecting my mental state because I felt alone and depressed as hell. I felt like a completely nonsexual being, just a thing that was hanging around for conversation. He told me how guilty he felt, how angry he was with the disease (NOT ME, if your partner shares feelings of anger remind yourself it's not with you, it's with the situation and try not to get defensive). We still have problems, but we are working through things and getting along quite well. We've become very emotionally close.

My advice to you is try to talk about some of these fears you have with your partner (if you haven't already) in a way that is not threatening to either of you. I would start by sharing how you see the effects on the relationship from not being able to have intercourse, and be honest about your fears. You might be surprised at what he's really thinking about...

hi shortstuff,
I do understand what you mean, I have sat for hours and hours over and over talking everything through with him, my thoughts, feelings, trying to understand how he is feeling, but lately he has completely changed, I can't talk to him now because he just ends up being absolutely vile to me. He has turned into quite an emotionally abusive person and if I share my fear of him cheating, he gets angry and tells me things like 'yeah im gonna go hire some slag she's waiting upstairs for me', or just ends up screaming at me. I know anyone would read this and think well why the hell am I with him, but I am young, he was my first everything, I am very lonely and I know that at my age finding someone who will stay with me when I can't even go out let alone have sex isn't realistically going to happen. It's just a shame because I really do love him and want things to work, I know that communication is key and I have tried so so hard but he is just horrible right now, which makes my fears even worse. Hopefully he will realise that talking to me would actually be better as that is what we used to do and we were much closer a long time ago. I do completely understand what you are saying though I am also the sort of person who likes to be able to talk everything through and feel that closeness afterwards.

I am glad to hear that your partner has listened to you and allows you to still feel close emotionally, you sound like you are doing really well at keeping your relationship a happier one. Thanks so much for your advice I really appreciate it, hopefully one day he will learn to really listen again and we will get back to being close emotionally too.

smile22, I'm so sorry you are having to deal with his behavior on top of your own pain.

How about looking at the other side of the spectrum... have you guys tried to stop talking about it? Maybe he is just overwhelmed himself? Sometimes, I think it's harder on our partners to cope because they don't have the chronic pain or fear of sex and its hard to imagine what we are going through. If he has been faithful the past four years whilst unable to have a "normal" sexual relationship with his girlfriend, it may be hurtful to him to hear that you worry about him cheating. Physical intimacy is important in a relationship, and while I don't believe it necessarily means sex, society continuously puts that idea into our head: in order to be intimate, you must be sexual. I'm 100% positive that this has been a struggle for him to cope with, but obviously he cares for you very deeply to have stuck around despite that.

The chronic pain we are dealing with takes over our minds and lives. In your case, it's effected you to the point your stuck at home all day with nothing to think about except this terrible condition and how badly its changed your life. I can't imagine being in your shoes. It's important to continue living though, even though at times it feels impossible to behave normally.

Anyway, from my experience when the pain was really bad for me, my partner also started lashing out. Some of what he said tore me apart, but I had to bring myself to realize that he wasn't mad at ME, just at how things were. Some of what he said was he felt neglected (which made me so angry because I did feel like I was giving it my all, but after reflecting realized I had not been paying much attention to him), like I no longer wanted him at all, and that everything revolved around sex now. Try not bringing it up if possible, take a break from discussing it and focus on bringing you guys closer. Surprise him with a romantic dinner for two, a bottle of wine, something that you know he would enjoy and see what happens...

Yeah I think I've tried it all, but maybe if I think he is going to be caring I will take your first advice and try to talk again, or if I think he's in a really horrible mood I will just stay quiet. Thanks for your advice I know I am in an awkward situation to try to help and advise but I know that I can use what you have said, I just need to use each different way at different times I guess.

Yeah I totally agree about the society thing, it makes you feel as if everything should lead to something physical when really it should just be able to stop at a cuddle shouldn't it. I really understand how you felt, its almost as if you make yourself believe that you don't want them some days, just so that it doesn't hurt so much when you can't have them in the physical way. Like you feel as if a kiss should be leading somewhere so it's easier to just not kiss. I try my best to keep everything calm and to keep it all open for talking so i will carry on with that and hopefully see a change soon. The living through thing is definitely something I need to learn to do as right now its such a struggle! I am thinking about getting a pet to give me something to concentrate on! I know it sounds silly but when I am alone most days I think it could make me feel a bit happier .

Oh my God I know, what I wouldn’t give to have an “off” button for my brain. I am trying to achieve that through meditation & am thinking that if I practice giving myself mental space every day the negative thoughts will have less of a chance to take hold. However that’s more of a preventative measure and probably wouldn’t have been enough to get me out of the shitty-thought loop at the time. I really needed drugs!

It’s rubbish rubbish rubbish isn’t it. Do you get any relief from ice packs? When I’m at my worst that’s about the only thing that does it for me.

It sounds like you could probably benefit from explaining the situation to your doctor, but I sympathise with how much energy that can take. Hope it goes well.

The book really helped me, I also bought the CD of the same title by the same person, it’s basically the same content as the book but I wanted to be able to listen to it when I was out and about and starting to panic. The author is Australian and has an authoritative yet calming voice lol, sounds weird but it helped me to feel that in a way, someone who understood was “talking” to me when I needed it most.

Oh, and I hope things work out with your man. I know it can be tough keeping a relationship together amidst all this, but I would say try not to put his wellbeing above your own. It would be great to keep your relationship together if it’s mostly supportive & is making you happy, but if it’s constantly taking more from you than it’s giving it might be time to have a rethink. Not an easy decision I know, I’ve been there and done that (& lived to tell the tale!)

All the best, hun x

Hi butterflyliz again, I hope you find that meditation works long term, hopefully you will be a much calmer person after doing it for a while (if you are not calm already).

No I literally can't have anything touching me near that area except water, the only thing I do to keep me from going insane is to use the shower to spray very cold water there a couple of times a day on top of my usual showers. I once put ice there but my god did it burn, I was so shocked because cold water doesn't burn, it helps, but it was almost as if the ice being so freezing had the opposite effect for some reason which makes no sense to me!

Oh I can understand why that would help, it's a good idea to have that there to listen to when you are out, sort of like a little safety thing to make you feel more controlled and calm.

Thanks, to be honest he is turning into a very different and not so nice person and I believe he is taking advantage of me being so down to treat me like shit because he knows I don't have the guts to end it, and I know that I shouldn't be with him but the thought of chucking over 4 years down the drain and being alone is very scary :/ i don't see myself doing it but hopefully one day when i can go out and stuff i will build a very different life. One day! thats all i ever say lol! realistically though I know I couldn't deal with a break up right now, i just hope that like you I can one day do it and live to (not) tell the tale ha ha!

thank you, all the best to you too x

Ah, your situation sounds so similar to what I went through. I totally understand about not feeling up to ending it right now. You need to look after yourself first & foremost. For me, we’d been together 7 years, it took loads of working up to, but it was 100% the right thing to do. Feel free to PM me if you ever wanna chat stuff through. x