Bad Flare up

I have just come off my period, which is usually the time I can get a flare up. Recently apart from the first day I came on the pain has been low so I have been happy which is rare for me.

Now its flared up again and I feel hopeless...I am praying that it eases off again but right now I feel like I just wana cry. I fould it so hard to sit at work today I just kept making excuese to get up and walk about and even stood up bent over my desk writing things. Now my back hurts from all the bending over and Im unable to straighten my back properly as this puts extra pressure on my vulva.

I am still wating for my nerve block appointment and tried to ring the appointment centre today and they are not taking calls as usual!...like why dont they employ more telephonists!! Bloody NHS

Im trying to put on a brave face as we have a new boss at work who is nosey and keeps asking us questions if we look stressed or upset...I dont fink he is being caring just monitoring us. So I dont wana yell 'my vulva hurts ok!...that what u wanted to hear!'

I was also thinking about dating again, now im thinking its not worth it. Who would want me anyway. Not only do I have this bloody Vulvodynia but also anxiety and panic attacks. I think I was thinking about dating also because the pain had eased off a bit so felt more confident..now I dont know what to do.

I was thinking to trying a christian dating site as I am christian and am fed up with guys just wanting sex lol .... still I dont know if it is worth it.

Sorry for whining I just feel like giving up


Hope you guys are doing ok and thanks for listening..I think I will just have an early nite tonite..

Godbless
xxxx

So sorry to hear you've had a bad day, when days like this come we just want to hide from everyone i'm the same, but we have to be strong, i no it's hard but just say to yourslve i'm having a bad day this is how this thing is, and tomorrow is another day, i might not be as bad,(easyier said then done i no). You are not whining don't ever say that, that's what we are all here for to help each other.We are not going to let this Fu.......vulvodynia beat us. please keep strong.

maggie xx

Just a thought with the work related stuff - at my last job I hid my condition from them and because of it I ended up almost getting myself on a disciplinary and having my pay docked from it.

With this new job I've been completely honest with my new employers, even if I haven't gone into the nitty gritty bit of the whole thing. I've heard advice before that if you have an ongoing health condition (as we all do, even if it's not taken seriously sometimes) you can get an appt to see occupational health through work.

This isn't a check-up or a health check, but someone that can advocate for you and put in measures that can help you to do your job in the bext way that you can, and to make sure you're not being unnecessarily or unfairly penalised by your employers.

I ummed and ahhed about doing this in my last job but by then it felt way too late.. was just thinking about how this may be a good opportunity for you to open up about it a bit more as you have a new boss, and I guessa fresh start.. especially if you're worried that they're not going to be very supportive about it themselves.

And on the relationship side of things, men really are a different species, and even though their sexual organs are outside of their body I think it feels sometimes that their genitals are the centre of it all.

Despite this, you can find some wonderful men (they exist, somewhere) that find this difficult to accept but can slowly learn. Unfortunately I think feeling low and irritable and horrible can come alongside this (at least it does for me), and remember, everyone carries their own baggage even if it doesn't show on the outside.

I hope any/all of the above helps you

Thanks Guys, the pain is pretty bad today...my line manager knows I have an ongoing gynea condition and is a lovely lady so i am lucky there.

I dont trust the new boss yet, so im unsure of revealing anything.

I know the pain has been so much better the last month or so, so Im hoping this is just a bad after period flare up that will ease off soon.

Thanks Guys for your support

xxxx

I think if I told the new boss I would describe it either as "a gynae issue" or "chronic pelvic pain" as it's really both of those things. You don't have to go into details about what is actually wrong as it's personal and private but at least it would be covered if you needed a day off etc. Most men run a mile if you use vague terms like gynae problems anyway and don't want to know the details which works in our favour alot of the time! Have you considered taking some painkillers to reduce the pain you are feeling? I know you're waiting for a pudendal nerve block but painkillers would help in the meantime and also if the nerve block doesn't work it's something to fall back on to reduce the horrible burning and soreness we get. I didn't like the sound of using painkillers initially but it's better than trying to soldier on with all that pain surely?

All I have are the shop bought stuff like ibruprofen or co-codermol and I dont find them helpful.

I am going to the dr tomorrow so I am going to ask him if there is anything else he can give me whilst I am waiting for the nerve block.

I did have a anti-inflamitory that you have to put up your backside! I found when I used one at night and one in the morning I felt sicky and horrible

There has gotta be something they can give me in the meantime!

Funnily enough someone I know uses the painkilling suppositories but he swears by them! Offered me some once for my joint pain and I politely declined!!

I think it's a really good idea to go and get some pain relief sorted, you know how the NHS are you could be waiting months for the nerve block and of course there's no guarantees it will work so at least this gives you more options. The more things we throw at this the better in my opinion.

I feel horrible for those of you who have to wait to get in for months to a doctor to get relief. Geez! that is ridiculous. I would be careful w/ your new boss. When i started my new position, i told my boss i had some health issues i was addressing. that is all he knows. he was fine w/ that. i have my foam donut sitting on my chair in my office. i am sure everyone has seen it. one worker asked if i used it for my back. i said i have a pelvic pain disorder. you should only tell as much as you want....either that or scream out "ok everyone, i have fecking vulvodynia. my vulva burns at all times, so leave me the hell alone. of course here in America, we would not say fecking. At any rate, beg and plead for pain pills. i take vicodin. sometimes up to three times a day. but, i am doing so much better. YOU WILL FEEL BETTER. do not give up. i am 300% better. i never knew i could feel somewhat normal. for me it was 'LYRICA" ONLY 150 MGS. i did get relief from the neurontin but..not like Lyrica. also, as you know, i had two spinal blocks. neither helped..however, the doctor shot the lower nerves in my tailbone..not the nerve leading to the vulva..why? cause he thought it would be more effective. i am now doing physical therapy. i am learning so much from these physical therapist who specialize in pelvic pain. i am working on strengthening my lower stomach muscles, as they are attached to the pelvic muscles. no sit ups or anything that pushes down toward the pelvis. will keep you updated. don't give up..it will get better. give Lyrica a try. it is a lifesaver for me. i can have sex w/ no problem...sitting is SOOOOOO much better. i do still get uncomfortable. but, i can live again. if all else fails move to America...we'll get you what you need.

Hey Julie, long time no hear and pleased you're feeling alot better! I was going to email you and ask if you were doing ok. Are you doing pelvc floor retraining? Or just external muscle work? I've started on trying to get rid of the severe spasm of my pelvic floor muscles but it's proving tricky because it seems that's the only thing holding my hypermobile pelvic joints together and I'm having alot of joint flare ups.

at this point, i really have only had two actual appts. where i am being shown how to strengthen my external muscles. i was told part of the therapy will involve internal message..(wondering how that will happen). i don't know what else is to come. the P.T also pushed on muscles in my stomach..when it hurt she would shorten the muscle by pulling my legs up like the fetal position but..i was on my back and then i would relax..she was holding my legs up while they were folded. she told me to shorten the muscles and relax them for 60 seconds each..ie i am on all fours, i sit my butt on my feet and then lean down on the floor w/ my arms folded in front of me. then i move to the left and right...probably makes no sense at all. wish i could draw a picture.

I probably haven't been on this site as much because the Vulvodynia is not on my mind 24/7 like it was. i sure hope the pain continues to be minimal.

how are you doing? have you taken any trains/subways lately? ha ha

Ha ha! No trains recently! I'm pretty much as I was before except I'm working on releasing the pelvic floor tension. I've been doing it for a couple of weeks so far so no change at this point. I think it's great you're feeling alot better and really good that you took the time to come and tell us too, gives me hope!