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Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,582
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Ok hands up if any of you has thought about sex?
Hands up if that's all you have done.
I no we have talked about this before but with new ppl all the time and it being a big part of life I thought I would bring it up once more.
Me and my partner don't live together.so as u might imagine , we don't get much change to do the light fandango.
I'm now in agony.i could barley walk .noooooo tut tut . Not because his super man .but because of this bloody condition.id understand if we had been swinging from the ceiling. But we wasn't.
It's going to take me weeks to even think about trying again. This bloody illness robs you of everything.
I'm thinking of ordering some American football gear for next time.
 
This is a good issue for discussion. Many people rather gloss over it. Some of the medicine used to treat FM may precipitate a reduced sex drive. A simple change of medication under medical supervision may improve sex and relationships. Some FM patients give up on romantic aspirations for fear of further injury or pain. You need to be patient and take it slowly and learn the sexual positions that allow you to be intimate without causing further pain. Moist heat and soaking in a hot bath for 15 minutes before intercourse or other physical activity helps.
 
I think it's necessary to continue to enjoy the pleasures of life like having sex, we need to get ourselves prepared for it.
 
It's impossible for me as on top of fibro i have interstitial cystitis and vulvodynia...to people whi dont know this is almost constant pelvic vaginal urethral pain that spreads into your bottom and thighs.

Its burning raw feeling skin front to back and throbbing pain as bad as child birth at times and that's without sex...just day to day at varying levels plus flares in needing to wee up to 20/30 times a day and night.

For me this started completely randomly about 2 years into having fibro and began with a two day flare that i thought must be a UTI.

It wasn't!

Ten months later in 2010 it flared again and never went away.

6 years on it's a daily battle of feeling like i have been kicked by a horse from waist down and into my girlie bits and random spells as if you have severe UTI that can last from days to weeks.

I can tell you i have tried everything and nothing touches the pain and to have sex would be like trying to get it on while you are screaming in labour pain.

Even showering and washing my bits can stir it up and just the stimulation of thinking something sexy or passionate kissing will cause it to go crazy.

I know this sounds like it must be an exaggeration but it truly is not. It is beyond shocking what this illness is capable of. Only my partner knows about this as i really don't think anyone 'normal' would believe me and would think a bit of pain is scaring me so i have given up...but nothing would make me just give up that part of my connection to my partner.

It's actually pretty heartbreaking and i keep it buried to cope.

I would add that prior to 2009 i had no gynaecological problems my whole life no UTI's ....nothing to indicate anything like this could happen to me and a normal sex life and even with fibromyalgia managed to keep sex going in a gentler way for those first two years before this element of it began.
 
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Oh willow that sounds like hell.i no when I lost my marriage and my brother plus a few other things I don't share.i had what was like a UTI.i had tests I was filled with water u name it I had it.they found nothing.it was like it for months .
It wasn't till I got home and sorted a lot of crap out that it went away ,it was a living hell, I can't even begin to imagine what u go through ,
One thing I did find that helped was no salt, of any kind no tins goods no packets .no salt at all, within two weeks I started to feel a lot better.maybe give it ago xxxx
 
Oh good gosh, I FINEALLY exhaled!!! I have thought about asking if anyone has any suggestions but somehow I just couldn't open my mouth (I know, hard to believe with me) so now I can breath!!!
My "drive" was fading in and out before the massive pain set in, my doctors all attributed it to age (I'm not dead yet, and I wasn't that old 5 years ago). Sex would often set of pelvic pain so I started thinking it was psychological. But lately on my "good" days I feel a little drive but shut it down out of fear. When we do endulge I have to use coconut oil and make it fast! I'm terrified what my muscles would do if I had the big O. And curious if anyone else has survived one in the chronic fibro stage?
Any tips or advise would be great. I've lost so much to fibromyalgia (as we all have) any peice of my life I can steel back I will.
 
Hi girls....well when i first got all this going on back in 2009 with the first symptoms being like a UTI i carried on with some sexual activity if there was a lull in pain and truly having the big 'O' even then was the most excrutiating pain you can imagine and would cause the whole area to be agonizing for weeks.

The last rare time I 'took a risk' of going that far was March 2012 ( see how i remember when another bit of me stolen). The consequences were too unbearable for me to go there again!

Thanks Forgetmenot...yes i have tried the low oxylate diet low salt no citrus etc but hasn't made any improvement for me sadly.
 
It's hard sometimes when we can no longer do what we used to, but it's something we need to learn to live with.
 
Thanks Willow. Just the fact that your remember the year and month tells me no O's anytime soon here!
 
I'm not sure eyesup. Maybe you should try to see how it goes. The more tents you are the worse pain will be anyway.
Plus I bet you have a nice mental Block now.i no I had one took years.
I get what feels like an itu when I pee sometimes, I hate it. But if I'm really stressed or my bi polar is playing me up that can start it off,then I have to tell myself it's all in my head and I don't have an itu.i no it's in my bladder but I hope u get what I'm trying to say.
Eyesup so next time try a little longer. Or longer foreplay.im sure this rushing isn't helping both of u.im not saying knock yourself out lol.but maybe just drag it out a little longer each time,until you relax into it without the panic.
 
So I've had org. since I've been diagnosed and it felt good - no pain. My husband got me there the easiest way possible for me (orally, hope that is not too explicit). Afterwards I was relaxed and happy for a little more strenuous activities.

It doesn't always work out for us... last time we tried I was starting a flare. My husband noticed my reactions were off and ended things early.
 
I am seeing no links DK (maybe they were removed) either cases I am glad that you are feeling better.
 
I think I might need the perfect storm! Things hurt so bad all I can think about is getting it over with and how bad I'm going to hurt later. So relaxing is maybe psychological. Unfortunately my pain is at its best after 6:30am and b4 noon, hubby is at work except on Sunday's at that time, and then there is my son...always around when I don't need him and never when I do! Not to mention he seems to be a constant any source of stress.
I want this part of my life back but I don't want to stress about it, it's like a catch 22. I'm greatful to know it is possable, now I have to find my way to it.
Unfortunately and WARNING WARNING WARNING...my spouse has grown fond of quickies as it allows him to be lazy and put in no effort! Big mistake on my behalf!
 
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I can see how that would be painful with fibromyalgia. Unfortunately both partners need to make adjustments. Lucky for us there's more than one way to skin a cat, so to speak.
 
My other half is t selfish. But if he thought he could have a quickie and I'd say nothing then he would to.we all no a moments pleasure will lead to a day or twos night mare.worse for me is if I stay over my other half .then next day I walk in like I been in a boxing ring ,my mother gives me the look.
Without being rude to dear old mum I'm not sure how I got here ,I've heard my dad call her a nun.so how she had me and my brother I don't no.
Be sadly for me I always like sex.whips chains toys cuffs u name it.yet my body now wants to .but punish me if I do.isnt anything safe from this bloody illness.btw to still think it should be called a disease myself. Illness make it sound made up.im of for a tantrums:/
 
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