Sticky Blood-Hughes Syndrome Support
8,154 members8,379 posts others suffer with this problem ?

When i am very poorly with cronic lethargy i cant hold my bladder ! I have had my full bladder empty without a slight leakage.

It is not like this all the time just when i am out of sorts......which is most of the time just lately.

Odour dee pee is not nice & i am now getting consious of it.

I wore a panty liner when i went to my sons for know the ones where you can run, swim & fly....I couldnt do any of those things !

Anyway on pulling my pants up i found the damned thing had stuck to the bottom of my foot...I think it was a problen with my wings.

Hmm on second attempt i got it in place ! Off i went with my son for Sunday dinner....pork my fav with crackling & stuffing.

After dins i had a nap on awaking i needed the i went to spend a penny.

On returning to the lounge my son awoke to also need the loo.......he came back into the

room laughing his head off

Shouting to his partner to come & have a look.... I followed. There was my panty liner stuck to the loo seat i had put the lid down so it now looked like the toilet had a tongue sticking out....O the shame & did i blush but i could see the funny side of it:)

Thank god candid camera was not about :)

33 Replies

How embarrassing, have you seen your doctor, could just be a urinary tract infection,

Good luck


I have that problem told the GP he told me to lose weight, I don't think the weight is the problem as I was suffering when I was thinner and only started to happen after a TIA, I wear the MAX TENNER LADY range they are brilliant but I dont want to wear them as they give me trush. Need to get refered as this is another downside to hughs :-(


Your Gp sounds as good as mine, they put most things down to weight.

Due to our illness & slugish systems it makes it hard to lose weight, my weight is galloping on.

They can give tablets that help with this problem but seem reluctant to do so.

We might be ill but we still need to keep our dignity, this is a horrid illness.

Nice to know i'm not alone. x


Hi. I had this problem too. I solved it by investing in a Kegal8 machine which I bought online. It is used to strengthen the pelvic floor muscles, without having to actually squeeze them yourself (which I found too tiring) My problem was that one I got to the loo, the action of starting to sit down triggered my bladder to open before I was ready and I couldn't stop the flow! Boy, was I glad I was housebound and have the loo downstairs kept just for me, whilst I dealt with the large puddle on the floor!!! The Kegal8 machine sorted that out after a few weeks use. It is expensive, but well l worth it and you can get the Vat refunded which helps a bit. I agree to see the GP first who may refer you to an incontinence nurse. But the Kegal8 was so useful to me that I wanted to share the information. Another thought is that, like you I couldn't get on with any kind of pads so bought incontinence pants instead. They make them in different absorbancies and are unobtrusive. I also get thrush from any pads I have tried so far but if you get pure cotton incontinence pants that solves that problem. Hope you have success one way or another! Good luck:-)


Hi Julie 99. What is a Kegal8 machine. Does it really work? Well, you sound impressed by it so I assume it is. Unfortunately my pelvic floor muscles are not the problem but would it still help? Do you put it up the urethra. How much approximately is it and what kind of website was it from?


Yes, I agree. Incontinence is an embarrassing problem. I was started on 10 mg of Vesicare - Solifenacin by the Urologist recently and I must say one of the side effects is drowsiness so I do have a little nap/feel more relaxed so the hospital pharmacist said to take them in the afternoon, or at a time when I was not taking too many of the other tablets I was on. In the past, my retired Urologist twice gave me Botox injections into my Bladder wall and my bladder did seem to settle down during the day but at night is another thing altogether. They did numerous tests and I was sent to another hospital by my urologist and the tests found that my brain was not telling my bladder when to urinate - hence the floods. Although I do have an overactive bladder but the incontinence has been since childhood. But then , we must have been born with Hughes? Am I right or is a virus or something to blame?

So, I was given catheters which I did not like to use, I was shown by a district nurse how to use them. Then I have always been on Desmopressin which made me feel ill and sometimes I cannot pee the following day despite numerous drinks due mainly to having a dry mouth. So I save that for when I am staying overnight at a friends house etc. Actually one night the other week my new Urologist was on embarrassing Bodies. It was on in the middle of the night on one of the channel four channels. He had given a teenager Botox. Her life was transformed so maybe you need to go down that route. Just another option. Whereas my current urologist has decided to start all over again and start with medication so he said the newer medications were more successful. so the Botox is the last option if all else fails. I still wear, as you do, Tena Lady Extra, but I do not get thrush. At night time I have full size pads, almost like children's nappies! It is really embarrassing but everyone who knows me understands. When I had a total knee replacement last year, I was incontinent every hour but the hospital did not give me my Movicol which is a powder that you mix with water or squash. I need to take Movicol because I cannot do a number two without it because of all the medications , in particular the 30/500 Solpadol which is just cocodamol but I take them two four times a day. They contain codeine so that is why people cannot tolerate them because they make you constipated. My GP told me after I came out of hospital, which was two weeks due to complications, that if you are severely constipated the bowel presses on the bladder making it work overtime. So have you considered that you may be constipated?

DO you suffer from lack of sleep besides the incontinence because my average sleep is two to three hours, I do have morphine patches for the pain which last for 96 hours and then you have to put a new one on. Then I do feel a bit less pain but still extreme pain despite the tablets.


Good morning Julie & thanks for you email.....I have been to a incontinence clinic in the past where they used a machine very like the one you are speaking of.

The problem i had with it was the more they excercised the muscles the weaker they got....this applies to all my muscles.

I can sympathise with the puddles on the floor i have had the same problem.

Now my bowel is the oppisite i have to take medication to be able to empty ! I have wondered if this is due to the muscles beeing to weak to push things through.

I had a little catalogue come through my door with some cotton washable pads in only the other day but i know the ones you are speaking of.

My problem is worse at night & i hate the thought of having to wear them in bed....Who would be a woman given the choice ?

I am so glad i am not the only one who is wearing this new perfume called odour dee-pee.

Oh Julie you have got to laugh else you would cry.....:) Bless you x


Yes, how embarrassing for you! Most people do not understand do they? I know I have been called names pi*** knickers being one. But it is embarrassing . Maybe you could see someone, first point of call your GP. Then they should refer you to an Urologist. It is embarrassng having to be examined but the urologist is usually understanding, well mine is, so something can be done! There are a variety of options. I must admit I have never heard of the Kegal8 so I will look into that.

Yes chronic sleep deprivation not only makes you tired but unable to do much. It is different from being lethargic, but I think they are linked. I have had chronic sleep for years and been unable to do things during the day but lethargy is also debilitating isn't it? Is this normal for Hughes?


Hello & thank you for your mailings. The Kegal8 is a weighted device that you have to hold with your muscles that is popped into the vagina. When i went to the incontinence clinic i was given cones 3 of them all different in weight.

They also put me on a machine that exercises the muscles like one of those slimming machines with the pads that contract the muscles.

My head is away with the faires this morn my spelling is all over the place i have hqad to get my pocket speller out.

The tablets you are taking are known to make the mouth dry i am sorry to say.

It is not that i cant sleep but i am up &down to the loo & if you dont quite make it then it is a clean up job.

You wear nappies when your born & go back to them later in life....wouldn't mind but i am only 61 :)


I know that incontinence is affecting a large percentage of us. I used to trickle if I just moved my leg. The doctor prescribed Ditropan which has helped - a little, but now I sometimes am unable to stop the flow, so going out is a problem, and I have to wear clothes that will not 'show' my distress. I also use panty liners but they do not alleviate the problem. I also wake several times a night and only sleep 6 or 7 hours. I saw the incontinence nurse once and she said that there was 6ml left behind. When I visit the loo it is often too late, and several times afterwards I do some more.

I have had several strokes and countless TIA's. so that is most likely the cause.

My throat gets really dry at night, but I think that is also caused by my CPAP breathing machine.

Wouldn't it be great if there was a cure for this!


My word you do have a multitude of ailments it must be so hard for you to cope.

I have had to vaginal prolapse surgeries & my bladder was small so they put a ballon in it to stretch it.

I was told to rock back & forth on the loo to try and completely empty the bladder, i am the same i go to spend a penny & a few minutes later i do another half a pence.

Have you tried the washable pants with a pad in ? They might help when your in company or out & about.

When i talk to you all my heart goes out & i wont to give you all such a hug, it is nice to know you are not alone but i hate to think others are suffering as i am.

I also have a very dry throat (had to look at your spelling then for throat my mind went blank)

My Gp has just prescribed a saliva spray, i have not got it as yet so cant say if it helps.

I pray for a cure every night, one day they will find an answer.......I just hope it is soon.

It seems to be more women than men who have this ailien to live with or is it just that men dont talk about it.....Take care i'm sending you a hug x


I forgot to say....Due to not being able to get in the bath any longer i am having a wet-room put in, they say it is going to take two weeks for completion.

It is going to be awful having the men working in my home with the problems we have discussed, i am dreading it.

I'm in a small bungalow with one loo in the bathroom, what an invasion it is going to be.

They are going to arrive at 8 every morning i am going to struggle with that, it is not that i am not up it is the fact that i am so slow.

By the time i have taken my pills washed,creamed, put drops in my goes on, i shall be ready to go back to bed

This is like a nightmare.....please wake me up someone..


I empathise with your problems but mine are just age, pelvic floor and child bearing.

With regards to the workmen could you get somebody to house sit and you go to another persons house for the day to allow you the dignity of going to the loo.

I know I hate strangers noticing how many times I go in the night.


It is not a one day job it is going to take them 2 weeks.

Both of my children have stairs for me to climb & although i could do them in an emergency 2 weeks of it would lay me low.

Looks like the garden shed for me :)


My late Mom had nearly every problem listed in the comments above. Unfortunatly, the "maybe it's" diagnostics speculations did not leave her various and many doctors's mouthes until she was in her high 80s. She did get a script here, and a couple of surgeries there, but nothing seemed to make much of a difference in her life. She was usually treated as though her symptoms were just an "expected" part of aging. UNTIL she was in a nursing home and her issues could be charted by the CNAs. But by then they had progressed beyond the point of rational treatment.

The years of dealing with this made certain-- lets call them "impressions"-- in her personality. For example, one autumn I took her to a rental condo at Snowshoe Ski Resort. Stunning views of succeeding smoky ridge lines extending east for miles and miles; to the west a wonderful jumble of multi colored trees at the height of their autumnal splendor. And she took a picture to share with one of her friends back home - of the bathroom! to show how safe and accessible it was for ladies with their issues.

Eventually her docs began to speculate. The words"celiac" was bandied about, but the consensus was that at her then advanced age, the diet would have done little good. Also, it was suggested that her peripheral neuropathy may be to blame and if that had been discovered earlier she might have had a easier time of it during her last few decades on Earth. She did make it to 90, but her " obsessions" made her life a lot more complex!

Good luck! I hope you all get effective treatment and can get a pass from all these bathroom obsessions that the non-initiated can not understand!


What a shame your dear Mother was not listened to in her younger years,

But saying that i dont supose they had the tecnologie in those days to diagnose something so complex as Lupus or Hughs ect....

Bless her heart to be surrounded by all that lovely scenery yet all she could focus on was the just shows how much of an impact it must have had on her life.

I love the way you have described where you took her....the multi coloured trees & the smokey ridge you write so beautifully i can vision it.

Thank you for sharing your Mothers story.


My incontinence issues have just started, I guess they are from my stroke, weird they have started now though, this one of my off times, everything health wise is wrong at the moment.

back in hospital with migraines, hopefully an MRI will reveal something tomorrow


I hope you get some results from your MRI this is such a miserable thing to live with, your incontinence could be down to the stroke maybe it will improve with time.

Good luck i shall be thinking of you.

Jillymo x


About 10 - 12 years ago, AFTER I was diagnosed with Celiac, I began to have "leakage" issues. I was horrified to think I was set on the same road as Mom's. I ran across a random internet posting that made a link between bladder leakage issues and "typical American diet" drinks. I made a conscious switch to avoid drinking anything for thirst except water. No juice. No sodas (excepting sparkling water,) no iced tea. Just water (And hot tea, coffee, and the occasional dinner wine or gluten-free beer.)

And within a month my bladder problems disappeared! Why? I have no idea. But it worked. And because I can not site the mechanism I was reluctant to post this. But then I thought -- why not?

But now that I think about it I might be remembering (or my brain might be filling in a hole the way our brains do) that something in sodas and juices irritates the bladder lining. ?????

(And by doing this I also, of course, cut out hundreds of calories a day. Nice.)


Hmmmm that is a strange one. I cant say i drink juces or sodas i am a coffee drinker.

I do suffer with wheat & gluten problems, i bloat out of proportion if i eat them, this is very uncomfortable.

My weight is galloping on due to the fact i eat to stop myself from feeling sick & i am unable to exercise.

Maybe i should just try drinking water & leave the coffee alone for a while.

It's all food for thought so thank you, i am so glad to hear it has helped you.


I do hear you about the bloating. Before I went gluten free my weight could change by 5 pounds in a day!

You may know that some say that the inflammation in the intestines caused by wheat ( or other dietary allergy) effects a lot of other organs and symptoms in that neighborhood.

Good luck!


I remember the bloating from my teen years, like you say you can gain pounds over night.

It became a joke because you could see my tuumy swell, i would carry a nappy pin so i could let my waste band out !

my poor old tum has been stretched in out out so many times it now looks like a deflated balloon.

May i ask do you buy gluten free bread and if so which one ? I find they lay so heavy on my tum, but i do like a bit of bread, rice cakes are not the same.

Oh for cheese on toast how i wish :) It's no laughing matter.and the alternatives exspensive to say the least.

I now have inflammation all over my body it is showing up in my blood results but they cant seem to find the reason as to why....nothing new there it's a constant battle.

All the best


Prof Hughes advocates a GF diet as does Prof Khamashta. If you have autoimmune conditions they usually advise you to try and cut out Gluten and watch for any of wheat derivatives of which coffee can be an irritant too. Try getting a good quality decaf!

Have you tried keeping a food diary to see if you can spot what it is that is causing the problem. Sometimes its not what you think it is that is causing the problem but if you continue to eat something that your body reacts to just because you like it, Im afraid your body is going to tell you how much it does not agree with you. :x


Thank you for your advice it is nice to hear from you. I attended the Royal Homeopathic Hospital for many years, they did all sorts of testing plus elimination diets,.at one stage i was being desensitised by injections. I feel the more my body breaks down with the immune issues the more allergies it lets in.

Now that i am very poorly i am unable to go shopping for myself & read labels to see what is in the product before making my purchase.

I shop on line but if goods are not in stock they put a substitute in that is not gluten free !

I find dandelion coffee very good i have found a nice one with plum made buy GreenBean,

as for snacks i keep a stock of rice cakes in but i cant seem to find a good gluten free bread.

My son found some bread in theunited states made from potatoe flour that was light, tasty & gluten free but i cant get it over here. :(.



M&S seeded bread is not bad toasted. I usually freeze it and toast it straight from the freezer. The same goes for Genius seeded bread. I don't like any of their other bread. If you get any of the GF prescribable foods Juvela do nice fresh fibre rolls which can be eaten straight from the pack or frozen. They are also great toasted with scrambled or poached egg and bacon for breakfast!!

If you go to Bruchetta's website, a GF restaurant in Kingston Upon Thames, they sell lots of GF produce including some little rolls and bread sticks that have olives in them I think that they will send you. Anyway the little rolls (Im not sure of the Italian name) have to be warmed in the oven for 3 minutes but are delicious and a change for a snack at lunch time. They come pressure packed in groups of 3 and are not expensive. By the way if ever in that neck of the woods that place is great for a meal!


Ok ok your making me hungry, I could just go scrambled eggs on toast, ho & bacon yummy even though i suffer with dry mouth the saliva is drooling !!!! Sounds fab-Fab

Genius I have tried but not the seeded loaf, not tried the M&S bread due to not being able to get into town.

Cant say i have approached the Gp for gluten free products i find my surgery hard work at the best of times.....they are not helpful but i might try i get free scripts.

This sight is great for stopping me doing any housework, i have been on here since this morn on & off.....great poem by sissy i thought.

I am going to bat that to my consultant, take care. Thanx :)

i have tried m & s range I would have to go to town for that but i am finding it hard to get out the front door


Have you thought about getting a delivery?


I do have my shopping delivered but what I was finding....if they didn't have what i wonted in stock they would put in a substitute.....I wouldn't mind but nine times out of ten it was nothing like what i wonted !

I have found some pouch meals i rather enjoy that do gluten free made by look what we found range.....they are handy on bad days & just require a ping......Asda & Tesco also do a few gluten free pouch meals.

My gluten free porridge oats i get off eBay.

You have very kindly helped with some tasty things are looking good on the meal all i wont now like many others on here is better health.....that is a tough one to tackle. you take care. Jillymo


I wish I could give you that too :-) x


Good morning,

I got on to the eye clinic early this morning & spoke with the sister, it seems they are short staffed that is why my appointment has been cancelled.

She has told me to keep the eye well lubricated & go to my opticians then if he feels i need to be seen he is to send me to the hospital....long winded or what !

The sight in my right eye is all blurred & i mentioned possible Sjogrens.

I have now got to go into town then maybe the fact i am going to insist i am sent to the damned hospital.

Gosh i have got one of those icky tummy days....looks like a full day ahead.


It hurts to think so many are suffering as i am but in a selfish way a comfort because the only other person who understood the misery of this rudy thing was my i feel i have made friends with others....I cant thank you all enough.

I have led a bit of a lonely life of late but now look at how many i have spoken to on this wonderful site....If between us all we can help one, it is a step in the right direction. :)


Hi, I was diagnosed with APS in 1999 and with interstitial cystitis in 2009. Now, am starting to want to investigate the connection between the two chronic conditions as there must be something that will help. I avoid staying out at friends' houses for good reason (bad episode a couple of years ago) and am also suffering from cognitive dysfunction. Got discharged from the Hughes Clinic last year but maybe I need to rethink........

All the best to all of you x


Hi, I was diagnosed with APS in 1999 and with interstitial cystitis in 2009. Now, am starting to want to investigate the connection between the two chronic conditions as there must be something that will help. I avoid staying out at friends' houses for good reason (bad episode a couple of years ago) and am also suffering from cognitive dysfunction. Got discharged from the Hughes Clinic last year but maybe I need to rethink........

All the best to all of you x


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