fed fed fed up!!!

fed up fed up fed up! want my job back, my independence and my health and boyfriend (actually no i dont want him!), want my health back!!!!!

Please please please will the good luck fairies come and visit me I am due some thank you

I cant imagine my life going back to how it was before. Working 50 hr weeks, loving my job, doing all my active hobbies, out every weekend dancing

The gynae said today that if I cant be helped I'll have to learn to live with it (he was being nice). And now Im sulking because I dont want to let this condition win, I want to get rid of it and get my old life back. I put so much into getting better I deserve some results dammit!

I can just see them tanking me up daily on valium, turning bitter and resentful, getting really old and lonely and smelling of cat wee.

oh my...arent I the happy one tonight?!!

Right im off to bed to read my book and have some escapism

night all xxxx

Hi Hun,

I know how you feel. I don't wana learn to live with it! If they actually put more money, research and decent caring doctors into this condition then we would be getting somewhere!!

How bout if people said this with every bloody illness...oh just learn to live with it...we wouldnt have half the meds and therapies that we have now for other conditions.

So dont give up and don't let them give up. They went to bloody medical school and the government are happy to spend money buying 2nd fecking houses and cut NHS funding!

Keep strong we are here for each other

"This too shall pass" nothing stays the same forever don't lose hope

Godbless
xxxx


Godbless

There's still some things you haven't explored Naomi, your yeast plan may help, a different medication might do the trick or physiotherapy and biofeedback. They can't say it's something permanent until you've exhausted all treatment angles so you still have things that could help. The dreaded Lidocaine ointment might work for you, apparently it does actually give some women fantastic results and calms the area right down. Oestrogen cream is another option.

A post I read somewhere recently from an ex sufferer (yes there are some women who get over this) about having massage for the problem said the massage therapist she saw had treated alot of women for this and every single one had a functional leg length discrepency which means some imblanace in the body had produced a LLD that could be worked out. That makes alot of sense actually because it puts alot of strain on the entire pelvic region and produces a mild scoliosis of the spine which could easily affect any of the nerves that supply the area. Tight muscles around the sacrum can also be the problem. There's lots of things for you to still try.

I do know exactly how you feel though, I've had 6 years of severe pain with my other problems and lost my job, social life and don't feel like me anymore so I know how hopeless it all feels but again with those problems I didn't give up until I knew what was wrong even though doctors were telling me they didn't know and finally got my official diagnosis and an idea of some things I could do to help myself. Orthodox medicine is very hit and miss and generally just throws drugs at the problem. Every physio I've ever seen told me immediately I had Hypermobility Syndrome but it took me over 5 years of fighting with the doctors to get to see someone who knew how to officially diagnose it. Other types of therapists are always astounded at how blinkered doctors are.

You still have some options so don't despair!

Do you think there's anyone out there that can help us, cause at the moment i feel we going to end up cureing ourselves,This is really pissing me off, had some bad days feel really low, keep thinking what if i've got this when i'm really old I no i should think positive but some days as you all no you think all the negative things and that make you even lower. All i'm getting from gyne is defocus and everyone else,feel like saying let me poke you in the eye then you try and defocus. We are all trying all these differnt things, so far after 3 years nothing has worked for me, just relly really hoping that acupunture will be the anwser to my prayers, not building my hopes up. I would really like to no girls any of you out there find it hard to defous, it's in my head every min of the day. keep strong girls we've all got to hang in there,. this horrible nightmare is not going to take over our lives.
maggie xx

This is the kind of thing that you can't ignore unless you get adequate pain relief that takes most of the pain away all of the time, are you on any pain meds Maggie? As for do I think there's anyone who can help us, I think there are some therapists and doctors who know more than the majority so it's possible but this is really a condition that requires us ladies to do the legwork and trying things out ourselves. The medical community know so little and aren't doing much to rectify that so it's up to us to research what's helped others and try things. It shouldn't be that way but it is.

Personally I got really negative and depressed really quickly with this problem and at the time I was working on trying to help my hypermobile joints and the negativity just destroyed my motivation completely. I soon realised I needed to have a word with myself and not give in to the negativity until I'd exhausted all options or I wouldn't have the motivation to try things. I know this isn't going to go away on its own so basically I need to try and remain positive enough to try all options or I'm guaranteed to fail by trying nothing. It doesn't mean I don't feel really down about the situation it just means I'm not giving up until I know pain relief is my only choice if that makes sense?

yep u make sense Sarah. Just hard to drag yourself through each day, desperate to be happy and just get on with it like my friends and family!!

It's in my head almost all of the time, the only time being when im reading (until a sex scene comes up!) or when im watching the soaps..but usually my mind wanders back to the fretting. I really really try to be positive and be easy on myself but I cant as its always there 24/7.

If I see a cute guy in the street I think to myself its pointless looking, he wont want me in my condition anyway. I suppose it boils down to low self esteem/ self worth at present (we've all read the books!).

As I'm not working now I try to make myself go out most days but if its a real struggle like the other week. I dont force myself. If I can sleep I would much rather be asleep and out of the stressing and nightmare...my psychiatrist says my anxiety has turned into reactive depression, which is very true. That is why I need try and change my train of thoughts, either that or start snorting tonnes of cocaine (the later was a joke:D).

I am going to book a retreat soon at this place...
http://www.globalretreatcentre.org/retreats/odr.html?event_id=483

If anyones interested in joining me you are more than welcome. It is free (donations) and very good. They teach you methods of meditation (not the OMMMMMMMMMMMMing type, but the type to centre your thoughts etc). They give you lunch and also a tour around the georgian house and gorgeous grounds. Yes so if anyone fancies it, you are more than welcome to stay at mine (my house is about an hour from Oxford/retreat centre).

Im still looking into CBT. The NHS can only offer internet websites (yes thats correct...no human communication!!) so I am looking for someone that is qualified locally.

I dont know how else I cope to be honest I dont. I use sertraline 100mg daily and pregabalin 300mg daily. Im not sure how much this medication helps but I try and tell myself it does.

I also set dates to look forward too, like to book a gig or a comedy night, make sure my girlfriends are free. Also to meet up with you guys soon! Oh and next week to visit a mate up in Newcastle. Still makes me feel bad as I worry that the government have benefits people out spying on me to prove I dont deserve my whole £60 a week (all together now...."OOHHHHHHHHHHHH!" )

I cant think what else. I tend to just plod along x

I find it difficult not to focus on vulvodynia also. Even when the pain isnt so bad that it imposes on my daily activities, the consequences of the condition for my social, sexual and emotional fulfillment mean that it is pretty constantly in my thoughts- triggered by things like mentions of sex (which happen rediculously often- this is a bad condition to have in such a highly sexualised culture) mentions of bike riding and swimming (people at my work cycle together- i wish they would shut up about how much fun they have), mentioning pants (one of my students-im a teacher- today said, "you look really nice in pants, Miss, why do you always wear floppy pants or skirts?")etc. What makes it worse is that its much too personal to talk about with most people. So I feign disinterest when invited riding, and say I like skirts better.
But I am feeling hopeful that I am heading toward recovery. I think Sarah's comments have been really helpful- that we need to take ownership of our own condition. We can't put ourselves in the trusted hands of medical professionals because they dont really know what they are doing when it comes to this condition. This can be a positive thing- it can feel good to be doing something about it- even if we are not entirely convinced that the something will be our cure. I am not prepared to "learn to live with it". Not an option. I can endure it for the time being, but I need the hope of recovery to keep me going.

Excellent attitude Lisa! I'm the same, I have to believe I'm going to get better to remain positive and remaining positive keeps me investigating solutions and trying things out. If we all keep trying things sooner or later some of us are going to stumble on solutions, whereas if we all sit back and do nothing we're all definitely not going to get better.

It occurred to me last night that sorting out pain relief that works is actually essential, it might break the pain loop of pain=muscle tension and faulty movements=more pain=more muscle tension and faulty movements=more pain you see where I'm going with this?! For some women breaking that vicious cycle can actually work which is why I keep getting leaflets about some women taking pain relief for a few months and then coming off it and being fine.

We have to be in charge of our health, I for one don't blindly trust doctors with anything that's going on with me and educate myself as much as possible about the conditions before I see them so if they try and fob me off or try and lead me down the wrong treatment path I can guide them back to where I think we should be going. Seeing physios is a brilliant option too because they can write to your GP and request things so getting a check up of pelvic alignment (misaligned pelvis' are very very common in women) is a must along with a pelvic floor assessment because most doctors don't understand musculoskeletal problems and will throw pills at it even when it can be something simple. A chiropractor I saw years ago told me doctors in the UK only do a few weeks out of their 7 years of training about these types of issues so little wonder they don't really understand them!