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diamond

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changed my mind about this post
 
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Misschloe

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Hi willow why did you change your mind , the first time I experienced pain in my lady bits , it felt like I had been kicked by a horse, there is a name for this , cannot remember what it is but will if remember, but it is known as one of the pains of fibro,
 

diamond

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i thought it was too much complaining lately Misschloe...i have vulvodynia and interstitial cystitis lots of the time which is bladder pelvic and ladies bits pain that goes into your groin and buttocks too.

You get weeks ...sometimes months on end with it and weeing up to 20 /30 times a day/night..and now i have got a prolapse uterus which will need surgery. Its happened very suddenly and that part of me is already so painful...burning skin deep aching and stabbing i cant imagine surgery as all the other bits are fibro symtoms and won't go away because of surgery.

I can actually flare my ladies bits up just showering...which sounds ridiculous but its true.

I use everything unperfumed but just the movement can do it.....so i am sad ,scared and ready for the scrap heap.
 

Nexi

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Interstitial cystitis alone Willow is enough to make me cry for you! The constant pain, no agony, is enough to make one go insane and as you say be "ready for the scrap heap". I have this as well and I rarely like to talk about it since it is rather personal and it is pretty difficult for others to even comprehend how much constant discomfort and pain is involved.

The triggers, I agree, I use fragrance free everything but I find temperature is my trigger more so. I cannot get chilled in the least. Kicker being...living in the Arctic circle!!! Yeah, the irony is not lost on me, lol. I bundle up so well...crazy good. I take baths just to avoid any sort of chills, I employ heating pads religiously (applying to womanly areas) to stem off the pain. I also take high doses of Vitamin C, crazy high doses up to 10,000 a day. Anything unused flushes out of the body so it is kind of a waste but I have been having this issue since I was 4 years old but back then they didn't have a name for it. So, I saw a naturopath and I was at 4 malnourished and so sickly because of it and sulfa drugs didn't work, the doctors had no idea what to do for me, they just sent me home, malnourished and not eating. The naturopath gave me kindervital and high doses vital c, juniper berry and strict orders to NOT drink cranberry juice, not eat or drink anything citric, no tomatoes and nothing spicy. If I stick to this I am generally ok. I always have pain but it is manageable.

Willow, my heart goes out to you...hugs
 

diamond

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Thank you Nexi...yes its a delicate subject and mine doesn't really respond to any real change of diet etc. Like you warmth and hot water bottles are with me all the time.

Like you i avoid cranberry and tomatoes spicy foods etc but i cant say it helps in any obvious way. I used to drink sodium bicarbonate 3 timesa day to try and get things under control but that doesnt help now either and the prolapse is now causing pain and other problems too so i dont really know which way to turn as with my fibro i have always found the least messing around and investigations the better i am....i have not had to face surgical intervention and all that entails.

HUGS to you too in the cold Arctic Circle x
 
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Nexi

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Hey Willow, I jinxed myself somehow. That or I am feeling some serious pity pain for you, in which case, I accept it...only if it takes some of yours away.

I wish there was something I could do to help you out.
 

Misschloe

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Messages
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DX FIBRO
Diagnosis
06/2009
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Hi willow my heart goes out to you, having to cope with so much going on, I hope you are not on your own and have good support through this very testing time, no wonder your sad some people with a lot less cannot function at all. As I see it like I say to my hubby I am not complaining I am expressing myself the best way I can, so willow we the people with fibro do not complain, we express ourselves, so you can express yourself as much as you like we are not complainers , we are fighters, because this is what fibro makes us do everyday. Iam sure everyone will agree you can post as many things as you like, if this makes you feel better , and it helps you get through another day knowing your not on your own, everyone understands your pain your frustrations, so shout them out loud for everyone to hear, because we are listening. Take care
 

diamond

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Thanks girls...actually i could fill a post about family support as today with all that going on i had to ring my brother who i love very much to do with our elderly and getting frail parents.

I was always the one to do everything for them but as you can imagine with my fibro like it is he has had to do everything recently like take them to hospital appointments and do any jobs.

Well today he spoke to me very sharply ...i wont go into why and i emplored him to be gentle as stress affects my fibro...but they do not get it at all...nor do my parents who say it cant be that bad and things like i don't try hard enough.

Within hours of the call i have lost my voice my throat and jaw muscles are rigid and soo painful i cant touch them.

Family just treating me with understanding would help...not pity or sympathy just understanding that this illness is real and there actions can actually cause me more pain....but i daren't say that as my brother already yelled at me to shut up and slammed the phone down when i tearfully asked him to be more considerate and just bear in mind my situation when he speaks to me.....cant sleep...crying now x
 
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Nexi

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Awwwww Willow!!! My heart aches for you... as I read what you had to deal with just this one time, I couldn't help but cry. I'm so sorry anyone would ever treat you in this fashion. It infuriates me to no end. >•<

We understand all to we'll Willow, perhaps send them to this forum for some education.
 

Misschloe

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DX FIBRO
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06/2009
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Willow if you cannot get family support, it may well be good talking to your gp and getting some one to one phsycotherapy, so you have at least some support, take care
 

diamond

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Thanks MissChloe
 

diamond

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To be honest i am not really one for psychotherapy as focusing on sad events just intensifies my emotions. i know for many people talking 'gets it out' and they feel relief and begin to heal.

I am the complete opposite. I do of course turn to my partner and i have a lovely best friend but after that to keep rehashing my feelings just makes the event feel bigger and prolongs the agony.

Probably i am unusual!!!

It would have been nice if my immediate family could have taken on board 'who i am' and not just want the positive capable me i was for 47 years...but i just think it is beyond them.

When i first got fibro and i bought a good book as of course like most people you can't really believe what the heck is happening to you..it must be bad dream you are going to wake up from.

When i realized it wasn't going away i remember taking the book to my parents one day and gently asked if they might like to read it especially as my dad was also diagnosed with post viral fatigue in the 1970's (later called ME/CHRONIC FATIGUE) so i thought it might also help him to understand his own health too as he was never convinced of his diagnosis and felt the pain was in all his bones...you know what older generations are like!

Anyway they didn't read any of it and now they are in their 80's it's too late to change them. They are kind people, just old and very wrapped up in their own little world and coping with a variety of health conditions of their own.

My brother and i have never had a cross word all our adult lives until recently but he too thinks 'pain '..ah yes you take pain killers and bingo you are fine. I know he thinks i should do more and thinks its psychological ...they all do!

So i accept their limitations but it's not great for my self esteem.

All contributions to this thread and suggestions have been much appreciated...thanks girlies.
 
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Nexi

Active member
Joined
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Messages
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Reason
DX FIBRO
Diagnosis
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State
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I agree Willow, I too am very much like you. Focusing on sad events prolongs them for me. If I need to occasionally have a good cry if for some reason it surfaces, I do. I don't over analyse...it is what it is. I've always been this way.
 

Trellum

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i thought it was too much complaining lately Misschloe...i have vulvodynia and interstitial cystitis lots of the time which is bladder pelvic and ladies bits pain that goes into your groin and buttocks too.

You get weeks ...sometimes months on end with it and weeing up to 20 /30 times a day/night..and now i have got a prolapse uterus which will need surgery. Its happened very suddenly and that part of me is already so painful...burning skin deep aching and stabbing i cant imagine surgery as all the other bits are fibro symtoms and won't go away because of surgery.

I can actually flare my ladies bits up just showering...which sounds ridiculous but its true.

I use everything unperfumed but just the movement can do it.....so i am sad ,scared and ready for the scrap heap.

Don't worry, this section is for venting :) It doesn't matter if you do it too often, this section is exactly for that, no one is keeping a count, at least I don't :) Plus it's better to let those feelings and emotions out, rather than keeping them in. But if for some reason you feel you need to vent a bit more and about other things... you should try with a diary. It helps loads. It's what has kept me sane, I write on it almost daily... sometimes only when I feel like I need it. I love the fact I don't have to censor myself at all, I just let it all out and it 's such a relief, almost therapeutic.
 
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