This is such a embarrassing problem, ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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This is such a embarrassing problem, but for us Girls I hope it helps

44 Replies

This is major that I am posting this, but to you Girls does any one have a stinging prob you no where and have to keep going to Loo , I no it isn't cystitis as don't have it when passing urine but just seems to be there all the time, feeling embarrassed posting this, but new to fibromyalgia and I don't know if this is a symptom. Ouch would be grateful if anyone has the same , and can advice

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44 Replies
Sharonfreedman profile image
Sharonfreedman

I don't have fibromyalgia, and I may be totally wrong, but this strongly reminds me of the terrible symptoms I had after returning to using biological washing powder after using non-bio for a long time. I woke each morning with terrible itching because of the residue in my sheets etc, especially in that intimate area.

It took a long time to work out the cause, as it wasn't thrush as I thought.

Hope this helps.

in reply to Sharonfreedman

Hi I don't use anything with perfume to wash my clothes, just a mild detergent , docs can't find a problem.xx

tulips123 profile image
tulips123

Similar since I cant remember when. Sometimes, it does turn out to be cystitis, sometimes thrush-related, sometimes (more often) one big ? nothing proven. I do have a bladder twice normal size. Consultant, tests of all kinds, still one big ? ?

I will be interested in other members' responses. Tulip xx

ukmsmi4 profile image
ukmsmi4

Not sure what it could be but whatever, I would bite the bullet and go to GP about that in case it is an infection of some sort. Don't want to let it linger if you can do something about it.

Good luck

Gentle hugs

Margaret :)

in reply to ukmsmi4

Hi Margaret, docs are pulling their hair out with me, they cannot find out why, not hormones I don't use soap, I use a mild detergent . Personally I believe now after reading a few things last night it could be all the Meds the doc has been trying me on. I am off all now just pain killers, so I am hoping it will pass.

Take care and thank you.

Tracey.xx

fibroglow profile image
fibroglow

Hi Blue52 yes I do have also this problem very often. But would also suggest if carry's on do get it checked with Dr. I know probably last think you want to do. But us Ladies often things change so hope it will ease for you. I use wheat bags when painful also drink Cranberry juice. But as you have said not cystitis. Don't feel embarrassed all part of life. Just unfortunately really annoying have to run to Loo so much, do sympathize. Take Care Hun Lv Jan.XX

in reply to fibroglow

Hi Jan I found a web site last night, it says this is common with Fibromyalgia , the feeling of passing urine a lot, I suppose the Bladder is a muscle too, and the continuing passing of urine can cause stinging . Apparently live goats yogurt can help. Yuck, inserted with a tampon for 30 mins.

I can't drink Cranberry because of the sugar and IBS, but drink loads of water, Docs say no infection every time I go. Oh well will try the Yoghurt.

Cheers Hun, take care .

Tracey.xxx

Greenpeace profile image
Greenpeace

Hi Blue52,

I can offer you my sympathy having this problem, as I had similar a few years back. It is NOT a symptom of Fibro, and you really need to see your Dr.to get a proper diagnoses.

When I first got it I thought it was Cystitis, or Thrush, that was ruled out. I changed my washing machine liquid to a natural gentle one, only used cotton underwear, didn't use bubble bath, or anything with perfume to wash "down below" I tried everything I could think of and it still persisted, I felt as if I was on fire. In the end I went to my GP and she said "I really should have come sooner".

I don't know how old you are, but my GP explained that as we get older the natural lubricants that we produce get less, and after the Menopause, unless we take HRT, they can dry up altogether. So an irritation happens and we scratch or rub the delicate skin. I also kept getting the feeling that I needed to go to the loo.

She prescribed an Emollient to wash with 3 times a day, and a Cortisone cream to apply. It cleared up completely within 2 weeks. I continue to take the above measures (not the Cortisone cream), and it hasn't come back.

So please, whether you're young, or older, bite the bullet and get it checked, it's probably making you miserable, and we really shouldn't mess about with our delicate parts.

Apologies to any guys reading this, or anyone with a sensitive disposition.

GP. 😊

in reply to Greenpeace

Hi I found a web site and it said frequent passing of urine is common with fibromyalgia , I have been checked at docs and no infection, and I still have periods, so not that, I use emulsifying ointment to wash, never soap and mild detergent for my clothes.

My Doc has been trying me on a lot of muscle relaxants, to try and suit my system so I suppose this maybe causing a problem. I am not taking any at the moment, just pain killers now, so I hope it maybe the Meds and will pass.

Thank you very much for your reply, take care. Xx

TheAuthor profile image
TheAuthor

Please do not feel embarrassed by this, and I genuinely hope that you can find some answers to this issue. I would discuss it with your GP just to get other medical conditions ruled out of the equation. If they say it is Fibro, then there is medication available that may help. One of them is called 'Oxybutinin'. It may be worth talking to your GP about this? I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

in reply to TheAuthor

Thanks Ken will have to look into the ingredients of Oxybutinin, as most thing have Lactose, and triggers my IBS, and speak to doc again

Take care.

Tracey.xxx

I have this too! I always get checked by the GP when I get it and every single time the GP says there's nothing wrong. I am in surgical menopause after a radical hysterectomy and I've found the only thing that helps me is Canesten cream.....

Telynores profile image
Telynores

It doesn't sound as though it's Vulvodynia though I could be wrong.

Good luck in resolving this.

MariLiz profile image
MariLiz

My GP prescribed the same as Greenpeace's recommended, a gentle emollient to wash with, plus a cream for occasional use. Definitely worked for me, and I continue with the emollient for washing. MariLiz

in reply to MariLiz

Hi Marliz, I do use emulsifying ointment to wash, but this seemed to start when trying out all the new Meds, I have another appointment tomorrow so will have to see how it goes. Thank you.

Tracey.x

MariLiz profile image
MariLiz in reply to

Hope all goes well for your appointment. Some medicines do have unwanted side effects. Good luck with getting it sorted. MariLiz

Stephrm44 profile image
Stephrm44

Hi Blue52, as far as I understand fibro can cause symptoms of an overactive bladder, hence the needing to go to the loo frequently. I was already suffering with this since having my son and was on medication for it before the fibro kicked in so not sure if it would be any worse now with the fibro. The medication I take does contain lactose unfortunately, having just read the leaflet, but I imagine there must be some lactose free medications with the same benefits. Hope you get an answer soon.

Gentle hugs, Steph

in reply to Stephrm44

Hi Steph, it is such a nightmare trying to find Lactose free Meds, and tonight I am climbing the walls seems worse than ever tonight, I stupidly tried the Live Goats Yoghurt and oh my not good, I do have an appointment at docs tomorrow but they can't seem to find anything wrong. It seems to rear its ugly head at night more so. But I don't know why. Grrr .xx

Scouser58 profile image
Scouser58

Hello Blue52, I understand having something wrong in that place,,is really puzzling,,,,

may I suggest using a warm salt drench (half pint warm water and i teaspoon of salt, sea salt,or even epsom salts)and gently rinse the spot a few times,,,this will easy any discomfort,,,,while you get things sorted on a medical level,,,,when I have a sore bit,,itching is my problem I use daktacort cream as and when needed for once or twice,,,I also stopped using soap and water there and now use baby wipes,,,,they are gentle and unscented,,,,,,my itchy sessions have been less with this new plan.

There is nothing worse,,than having something annoying and cannot get an answer or the right help,,,,and if it is medication side effects,,,what strife to have to deal with,,, ,,

I hope you get some good support,,,ttfn from karen.

in reply to Scouser58

Hi Karen, I wouldn't be able to soak anything as it feels like it's in the bladder, up inside if that makes sense, I am not sore just a burning sensation, but not when I urinate, just seems to be there. Weird I am just hoping once all the Meds are out of my system it will go😣

take care and thanks Tracey.x

Erica50 profile image
Erica50

I also have this, and attending doctor right now with it, I've to put urine sample in and the go for some blood work, thinkin it might be sugar related, I'm not to heavy I'm a healthy weight, but have been losing a wee bit since starting on duloxetine, but every time I go to loo it is only very small amounts, and then it's as if my urine burns me and then causes me to be itchy, will need to see what results return. Hope you get it fixed and please let me know how you get on, take care x

in reply to Erica50

Oh dear , you have it worse than me, I hope your bloods and urine test show something so you can get rid of it, maybe your like me and Meds set off a trigger, I just don't know any more weather Meds are helping us, or hindering. I really feel for you Hun and I hope it all subsides very soon.

Take care and good luck. And also let me know how you get on too 🤔 😣. Xx

in reply to Erica50

Hi Erica, mine is a water infection, and now going to have to take Antibiotics, which will kick of my IBS-D oh happy days, how did you get on.?

Erica50 profile image
Erica50 in reply to

Hi I won't get blood results until Friday, but urine did show it was a bit high in the sugar level, no infection in urine, but need to wait for blood results, I really don't think half of the people who deal with our fibromyalgia and all our other illnesses know to much about it. I have an appointment with g.p next week, I get so fed up going to them, I so hope you get yours fixed soon, fingers crossed and gentle hugs take care and let me know how things go ? Xx

in reply to Erica50

Don't know if you have seen my post, nurses got me mix up, no infection, fibromyalgia bladder, just had call from my doc.

Scouser58 profile image
Scouser58

Hello Erica50 and Blue52, well firstly I hope you both get some help and something that eases your problem,,,and you just don't need to have the wrong things told to you,,,,nurses need to be careful,,,,,,get the best care you can,,,ttfb from Karen.

Erica50 profile image
Erica50 in reply to Scouser58

Hi all just an update on my results, need to go for more bloods done and I now have a chest infection, on antibiotics, my bloods showed high levels (don't ask me in what) but need more bloods done for my kidneys, I'm ready for the scrap heap, Ive got so much xmas wrapping to do and I have no energy to do it, so I think everybody will be getting their prezzie in xmas bags, that's my moan over haha sorry, gentle hugs to you all x

Denny48 profile image
Denny48

I'm having my first (flare up) and doc has only 2 weeks ago started treating me for fibromyalgia, I've noticed the some changes in that department too. Thought it might be side effect of pills maybe. Thank you for braving raising the subject

in reply to Denny48

Hi Denny, my Doc told me to take Bicarbonate 3 times a day , I have only had one last night, but it already seems a little easier. Hope you feel better soon. Everyone is so nice on here, and I am glad I posted it now, it may help others now I know Fibromyalgia can affect this area. Xx

Maladjusted profile image
Maladjusted

I suffered with this for months before biting the bullet and seeing my doc. He said it could be related to my medication, or could also be age related as we get friction inside due to lack of moisture. For now he has given me Replens to try which does seem to be helping.

in reply to Maladjusted

Hi I just looked Replens up on the net , but I don't have this problem, but thank you for your reply. So glad it helps you.

Maladjusted profile image
Maladjusted

I didn't have the problems associated with use of Replens either, just the stinging and itching, so was very surprised when doc gave me this, however it helps, for now

Em

in reply to Maladjusted

Hey em thank you will talk to my doctor, do you know if it's Pom or can you buy over the counter, although I looked it up didn't think to see ,will try anything right now lol.x

Maladjusted profile image
Maladjusted

You can by it in most pharmacies, and at Amazon. I think it's about £8. But if you don't pay for your prescriptions, then better to try it on prescription. My doctor didn't examine me, just listened to my symptoms , and suggested a lubricant. Then asked if I wanted hormonal or none hormonal. As replacement Oestrogen products give me thrush, I opted for the latter, which was Replens.

I do hope it works for you, as it gets embarrassing doing funny little dances whilst you are out & about ;)

Em. x

in reply to Maladjusted

Ha ha love it, I bought some today,Flipping £11 in Boots, if it works I will ask my Doc to subscribe, or go to Amazon, cheers Hun and thank you.xx

Maladjusted profile image
Maladjusted

£11? phew - Thank heaven I don't pay for my prescriptions. I do hope it helps you.

Good luck. Em x

Scouser58 profile image
Scouser58

So glad that comfort and peace is beginning to be found,,,,£11 that is expensive,,,,,the script is cheaper,,,,,ttfn Karen.

Hi Karen , Just thought I would let you know, a Boots Pharmastist recommended PH balance, it Hormone free. And one night time dose same as you use replens, Boom gone, thought I would let you know, in case you wanted to try. X

Erica50 profile image
Erica50

Hi blue, was just wondering how your water works are going(haha) I've had another infection and more antibiotics,also chest infection, again, but thankfully I'm being referred back to neurological as I keep having a few falls, I feel as if my right foot has moved (well my brain is telling me it has, a think) but my foot hasn't moved then I go to move and I miss the stair and fall, so my g.p sending me back to Neuro. Hope you are well, and have a better 2016 xx

in reply to Erica50

Hi Erica, still have it but not as bad, the 1st time I use the PH balance it went, but after 2 days came back, still no infection, Doc is baffled at Mo. She knows FM can cause this, I had more bloods and water samples done on Tues, not sure what she's testing for as had to do two water samples, not done that before, and all had to be tested before 9.30am. ????. So I go back in 3 weeks and see what's what.

Sorry to hear about your foot, our brains are confusing, and yours seems to be , poor thing. Maybe for now you might have to keep an eye on it to see if it has moved before you take a step, especially on stairs, could be dangerous more so if you are going down rather than up. I hope the Neuro sorts this out for you , let me know how you get on .

Take care.

Happy new year to you, I hope 2016 will be a good year for you.xx

Oh and thanks for asking.

in reply to Erica50

Hey Erica , how is your foot now, hope things have I,proved.?.x

Erica50 profile image
Erica50

Thanks for asking, I'm on the mend, but if only I could get rid of chest infection. If it's not one thing it's another, just seem to never get a break. How's things with you? X

in reply to Erica50

Chest infection do seem to hang around, sorry it hasn't gone yet. Struggling a bit with back but getting there. I hope you feel better soon.xx

i intermittently have same . i now use emollient before showering so my body wash cant be washed into the offending area then i rinse off last with warm water , then use 1 percent hydrocortisone cream till healed. wash eleverthing in woolite as most other washing products def set it of . clean myself with emollient after ever loo visit . use t tree creamto keep down bacteria count as well one every few days

i def dont have cystitis . if i did get cranbery capsules or the constiituent thtas in it d mannose . avaiable in health shop or online . its marvelous better than antibiotics if you catch it early

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