Hi Everyone, I hope you are all keeping as well as you can be. Since being diagnosed with SLE 6 years ago I’ve had recurring UTIs much more frequently than before. I had to have an antibiotic every month until my GP put me on a prophylactic antibiotic which I’ve now been on for a few years alternating the 2 antibiotics every 6 months to avoid building up a resistance to either. Anyway, I used to love doing the Aquacise class at Bannatynes but found even on the prophylactic I still got a UTI. Could it be the chemicals in the water or the germs or both? Whatever the reason, I’ve had to give up the class and swimming and using the jacuzzi to avoid infection. It has been found that I have an atrophying kidney and without the prophylactic, even without using the pool, a UTI returns very quickly.
But what has occurred to me is that if I could wear a waterproof swimming costume or bikini bottom I would be able to use the pool and jacuzzi again. Does anybody else suffer with recurring UTI’s worsened by using the pool? And does anybody know of waterproof swimwear I could buy to enjoy swimming and Aqua classes again?
Hoping somebody can help as I miss being in the water at home or on holiday.
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Spotty-ewe
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What about just the knee length shorts of a light weight diving wet suit or even a whole short sleeve one piece diving suit?Although some water does seep through.
Of course it might just be the chemicals in the water touching your skin anywhere? Does it happen if you swim in the sea?
Thanks for your reply AC. My husband is a diver and funnily enough he thought the same as you even going as far as to suggest latex seals on the legs and waist although he thought it would then be hard to put the garment on. Apart from that I’d feel very conspicuous in a swimming pool and would feel I’d have to explain to everybody why I was dressed that way which would be embarrassing. I just wondered if any manufacturers have produced waterproof swimwear for ladies with my kind of problem. I haven’t as yet tried swimming in the sea since the recurring UTIs started, but I must try next time the opportunity arises. Good to hear from you AC and thanks for the suggestion.
You could just say you have a non contagious rash!
I had the most horrendous rash all over my torso which puzzled every doctor I saw ... I was convinced I had the plague .... eventually my dermatologist sent me for biopsies and it turned out to be a post viral rash after flu !
I actually did say that when covered from head to toe with a Lupus rash in Canada 6 years ago. I found myself telling everybody I met that the rash they could see on my face, neck and hands was the result of an allergy, which in effect it was - to Terbinafine. So I definitely sympathise with your post viral rash! It was frightening too because if it is doing this to your skin what is happening internally? Glad we are both still here to tell the tale!
When I had a leg in plaster l got a thing called “Limbo” can’t remember if that was the name of it or the make of it but it had a seal that went above my thigh and I could get in the shower and it was waterproof.....Maybe there is a garment made for people who have a colostomy because they wouldn’t be able to go into a swimming pool without some protection would they?
But TBH I don’t think there will be anything you would really want to be seen wearing in public!!!
Thanks for your reply TT. Sounds a great idea for dryness, but not sure if it would prevent infection. I wonder if I could buy a big enough waterproof nappy? 🤔
Sounds like you have pretty bad vesicoureteral reflux which is when urine backs up in your ureter. This would cause an atrophic kidney. If you’ve had recurrent infections, they should also draw a blood culture to make sure it’s limited to just the kidney. There isn’t much that can be done in this case. Even a waterproof bathing suit won’t prevent this from happening and would create more of a breeding ground for bacteria.
Have you seen a urologist or talked to your ob/gyn about the problems? They would be best suited to help you (no pun intended ☺️). Keep us up to date! I hope you find answers.
Thanks for your reply JM. Yes, I’ve seen a Urologist a few times and even asked if my kidney could be removed but was told because it is atrophying it is sticking to other organs so it would be a very complicated and risky operation. My good kidney has a duplex system so I don’t know if it being fast-acting has led to the bad one not being efficient enough. Anyway, the Urologist’s answer to my problem is just staying on the prophylactic, possibly for the rest of my life. But my quality of life has deteriorated with having to give up things like aqua classes, swimming and jacuzzi, as well as other activities I’ve had to curtail due to my Lupus and heart problems. But as they say, there is always somebody far worse off than me and I’m grateful to be still here and kicking! But if I could get something to allow me back in the pool even for just one session per week, I’d be grateful. However it is possible for the moment that nothing suitable is available or as Aged Crone says, nothing you’d want to be seen wearing in public!
🙁Aw spotty, I’m so sorry. I understand. I like to fish. If someone told me I could never fish again, I’d be devastated. I don’t think this has anything to do with your externals apart from temperature variation. Your lupus probably puts you at an infection risk. Lifetime ppx antibiotics seems reasonable. You could try coconut oil and this does work but I don’t think it will address the crux of your problem which seems to be immunocompromised secondary to CTD.
I hope you find a solution. Please keep us up to date. Many hugs
I suppose because I kept getting a UTI everything I went back to the pool even whilst on ppx antibiotics I assumed there is something in the water exacerbating my problem - hence wanting something waterproof to keep the water away from the problem area. If I get to the bottom of it (excuse the pun) I’ll let you know. Thanks for your support, understanding and hugs JM. I really appreciate it.
Have you ever considered you may have a fistula between your colon and bladder? This would cause bowel bigs to seep through. Have you had a cystoscopy and MRI of the pelvis and rectum? Apologies if this has already been mentioned
No a fistula has never been suggested to me and I’ve never had an MRI of my pelvis & rectum. I’ve had so many tests done by the Urolgoist, not to mention endoscopy, MRI brain scan, non-invasive angiogram (done with dye) etc etc over the last few years I guess this is something that hasn’t been thought of. There has been a huge turnover of Urologists at my local hospital in recent years so there is no continuity and my GP has had to request certain procedures be repeated as there has been no follow up. All very frustrating but I must admit once certain symptoms pass and I feel better I tend to forget about them. Too busy concentrating on the next ailment! So it is partly my fault. The last Urologist I saw told me to just stay on the two prophylactic antibiotics (alternated every 6 month) until they no longer work and then they’ll find new ones for me. He has now left the hospital so I don’t know whether a new Urologist would suggest further investigative procedures or not. Probably while things are settled in that department they are just leaving me be and concentrating on people more urgently needing their help. I’ve now tracked down some waterproof swimming shorts although they are designed for faecal incontinence so not sure they’ll keep my relevant areas completely dry. We are away for the weekend but I’ll order them before we go and once they arrive I’ll try them out and report back.
I’ve just realised what a cystoscope is! 🤭 Yes, I’ve had it twice - it was one of the tests that had to be repeated when a new Urologist arrived. Both times nothing abnormal was found in the bladder. 😊
Sadly I am in the same position as you. I used to dive, surf, swim, body board etc but no more. I have had sepsis twice after swimming in a local pool and that is despite prophylactic antibiotics. The urologists and my GP have both advised against swimming. I am totally gutted.
I did think about s dry suit but that for diving, not swimming and I'd get too hot. And a wet suit wouldn't work. They sit get wet but just keep you a but warmer. Even a nice bath is forbidden. It sucks!!
I’m sorry to hear you are in the same position especially as you were into far more water sports than me - you must be devastated! I don’t have baths anymore either so miss the nice relaxing ‘me time’. Has the GP or Urologist explained why you ended up with sepsis after swimming in the pool? Is it a compromised immune system unable to combat the chemicals or bacteria or both? No explanation has been given to me for UTIs happening after being in the pool or jacuzzi and it seems strange some of us have this problem when most people don’t. If I can track down waterproof swimwear I’ll post it for you and others like ourselves. Good to know I’m not alone!
I have a dormant e-coli and enterococci bug in my kidney. I also have hypogammaglobulinia so my immune system neither recognises or can fight infections of any type. I'm becoming resistant to more and more antibiotics so it really is a big risk to me.
Like you said, it's nice to know we are not alone x
Hope things are improving for a you? Can I ask how they found those bacteria were dormant in your kidney please and what their plan is as we are very similar with so many of our medical problems!
I have had enterococcus (now multi resistant) and E. coli infections repeatedly in the last year (never before, my rheumy is blaming methotrexate and has just taken me off it) with 2x pyelonephritis and urine almost always half full of sediment, lots of red and white cells and increasing protein. Lack of agreement between nephrologists, urology, rheumatology and immunology about cause and treatment. Urologist has fully checked bladder and said not coming from there, must be kidneys, one nephrologist said it’s renal involvement from lupus, next nephrologist said it’s very unusual but thinks more infection, immunologist said the severe 2 year long hypocomplementemia causes all sorts of immune and autoimmune issues etc. Urologist says must take prophylactic antibiotics, rheumy and nephrologist said no...
I think the constant infections even when they’re low grade is causing the lupus to flare worse and a weeks course of antibiotics each time doesn’t seem to work for long as I think you found? Do you get protein in urine too with these as mine is confusing the drs.
I was in hospital 2 weeks ago with a big neuro lupus flare where they gave me pulse steroids, rituximab and first dose of cyclophosphamide but i asked medical records for my urine results as an inpatient as still have blood and protein on dipstick and was shocked to be sent the two tests I’d had done as an impatient showing two different bacterial infections with the labs saying needing treating - and the hospital drs hadn’t seen or actioned (or informed me or my GPs 😬) these results yet I’d received really aggressive immunosuppression despite severe infections.
I’ve just got a weeks antibiotic from GP but due next cyclophosphamide in less than two weeks and a bit concerned I need longer term antibiotics to properly kill these and so much immunosuppression (on top of a very over activated complement system) is not going to help. Chicken and egg situation really I think as one exacerbates the other 🙄
Hope you’re making progress with yours. Did you give the talk to the ED Drs in the end?
Hi I sympathise due to uv I have avoided swimming in the sea, was hoping to try this year with wetsuit etc. to see how I do...
gave up on swimming in pools as worried chlorine would be too harsh on my skin & too much uv again..no infection, but my sister was having similiar issues with water UTI & tests her pool water to ensure chlorine is balanced with acid (brother is in the water business).... I discouraged her from lake swimming with ? bacteria in the water... Seems to be fairing...
Really stinks to give up things we love...water was mine along with sun...do try the sea if you can..... ML 🌊
Hi ML, sorry to hear your swimming is restricted too due to UV. Being in Scotland the sea is a bit too cold for my liking but next time we are somewhere warm I’ll definitely give it a go with a long sleeved t-shirt and cap to avoid too much sun too. 😎
Yes, lakes can hold their own nasties so not advisable as you say.
Giving up things we love isn’t easy, so I’m gong to keep searching for a solution. I’ll keep you posted.
Thanks Phillippo for your concern and advice. I do all the things you mention but they don’t prevent the UTIs after being in the pool even though I’m on a prophylactic. It must just be my compromised immune system unable to cope with the bugs and/or chemicals. So I’ll keep searching for waterproof swimwear so I can return to the water without fear of nasty after effects. Thanks again.
too. Resistant bugs (enterococcus and E. coli) despite multiple antibiotics. Also had Sepsis previously as my body did not mount a defence to Pneumonia. I was
Previously diagnosed with SLE also Behcet’s. My brother died due to Pneumonia recently as his body did not respond to Antibiotics.
I’m so sorry to hear about your brother Cpops. That is very tough. Also sorry to learn of your own resistant bugs and resulting Sepsis. Any form of penicillin no longer works for me and I’m worried I’ll build up a resistance to Cefalexin and Nitrofurantoin which are alternated as my prophylactic. This afternoon a nurse recommended I Google waterproof swimwear (why didn’t I think of that?!!) and I’ve seen a few possibilities. So once I’ve ordered and tried one of them I’ll post the results. Take care.
Not super common but can be in lupus due to recurrent cystitis with or without bacterial infection. Causes thickening of the bladder wall and spasms leading to VUR. Usually happens on one side so your other kidney makes up for the loss of one if the other becomes atrophic. More common in children as they get diagnosed after recurrent UTI before sexual activity.
Best you can do is stay on prophylactic antibiotics for life to reduce infection. Can be diagnosed by urologist. They shoot dye into the bladder and see if it relfuxes and for how long.
Not the same as nephritis which is caused by by inflammation and/or antibody complexes clogging up the kidney blood vessels and/or tissue itself.
As Phillippo says, thanks for the brilliant explanation. It has helped me to understand my problem much better now. I wish you were my doctor as you explain things very well in terms laymen can understand. Many thanks again JM. 😊
Hi, sorry to hear this and yes I have similar problems. I also have an autoimmune skin condition around that area that flares awfully after swimming (I presumed the chemicals). The dermatologists gave me a waterproof thick cream called epiderm but that’s more to protect the skin; it might prevent some bacteria getting up the urethra (it’s a very thick cream!) but probably not completely. I also find I get thrush and UTIs after swimming (on my 7th UTI this year) so would be very interested to hear if your waterproof idea works as swimming is so good for the rest of our lupus bodies! In terms of caring what we look to other people in weird swimwear, i think we have to try to not care what other people think. I wore a full burkini (with face covering!) on my recent holiday for sun protection as I’d ended up in hospital after every hot holiday for 4 years and my rheumy was losing patience and at the stage of banning all hot travel. I got many strange looks and 2 of my children refused to swim with me initially because I looked so ‘weird’ 🙄😂 but i felt much safer in it (although it didn’t work and I ended up in hospital for 12 days after with another sun induced flare 😬).
Hope you find something that works and UTIs calm down x
Hi Melba, So sorry to hear about your problems. I admire you for wearing your burkini regardless of what others might think (including your children! Haha) and sorry to hear it didn’t work. But you tried and I admire you for that. I’ve found a pair of waterproof swim shorts on the web (£25) which I’m thinking of trying, wearing my usual swimsuit on top of them. If so it will be my first time in the pool for about 2 years. Since giving up the pool I haven’t had a full UTI just a few symptoms now and again usually following days when I haven’t been drinking enough. So it will be a good test trying it out. So I’d better get on and order it! Thanks for all your encouragement and support. Hoping you can enjoy the rest of the summer without any sun-induced effects. If not move to Scotland as it seems we don’t have half as much sun as everywhere else! 😎
Hi Maye, I didn’t know there was such a thing and I doubt if our nearest small town will have one but I’ll definitely ask. Many thanks for that. I love your budgie too. I’ve had two and they both lived to almost 9 years old. Real characters and good talkers. I still miss them.
I like the budgie too though wasn’t my pick - randomly assigned to me!
I’ll cross my fingers for you that there’s a salt pool close by 🤞.I know how hard it is to give up the hobbies that we love - I used to be a big hiker. I think it’s so important to try to keep doing the things that we love. And if we’re unable to, then we need to find new things that we love. It’s about fighting back and not letting it take everything. Xx
You are so right. If I can’t find a salt pool nearby I’ll try some waterproof swimwear I’ve managed to track down. I won’t give up! I love hiking too but had a bit of a disaster in May this year which I’m going to write about in my next post. I’ll let you know how it goes re the salt pool. Take care X
I’m sorry you have recurring UTIs. I don’t swim often so I can’t help with your specific question but I do suffer with recurring UTIs myself as well.
I’ve had 9 in the last 2.5 years and I’m now resistant to several antibiotics which ended with me going to urgent care again last week.
My UTIs start very suddenly and always I start immediately passing bright red blood filled pee.
I have antibiotics at home to use when this occurs as long as I do a pee sample to send off with my GP surgery on the same day and do the sample before I take the first tablet.
However this time I was in severe pain with failure of the antibiotics and, although now treated again, I’m now being referred to urology.
My GP has said I’ll likely be put on a prophylactic as well. However I’m already on a prophylactic for thrush as well as all the antibiotics also cause me to have that.
I’m really not looking forward to the cystoscope and I feel they won’t see anything anyway! I’m concerned about the bleeding every time though as it looks like a blood sample rather than a pee sample! I am on warfarin for antiphospholipid syndrome and I’m diagnosed with lupus like syndrome and probable Sjögren’s.
I’m sorry I’m no help to you but I just wanted to say you’re not alone and I really understand.
I’m sorry to hear about your recurring UTIs and thanks for sharing that with me. 9 UTIs within the last 2.5 years is awful and I can identify with that. Luckily since stopping swimming, jacuzzi and having baths I haven’t had another UTI as the prophylactic antibiotic seems to be cope until I start swimming etc again.
Your blood-filled pee sounds very serious and I’m horrified you haven’t been referred to a Urologist before now. I’m sure the prophylactic will help - mine definitely does, but because my underlying problem is an atrophying kidney I’ll be on it for the rest of my life. The Urologist will hopefully find the underlying cause of your UTIs and even just knowing helps.
Regarding your recurring Thrush, have to tried live yogurt? I first got thrush in my mouth after protracted courses of antibiotics following a general pelvic infection after losing my second baby. My GP told me to eat live yoghurt keeping each mouthful in my mouth for a few minutes before swallowing it. He said if I had thrush ‘down below’ to use the yoghurt there too. I didn’t but he said it really works. It certainly did for my mouth and now, as a matter of course, whenever I’m on a course of antibiotics I eat live yoghurt and it has prevented thrush ever returning.
Don’t worry about the cystoscope. It enters the bladder much quicker than you realise and I was only a bit sore passing urine for a day or two after the second time. The first time I had no after-effects at all, so it obviously depends on who performs the cystoscopy. I’ll keep my fingers crossed for you that you have somebody who has a good technique.
Yes Ive tried the yoghurt but it never helped me. Drs have now involved a microbiologist for a treatment plan and I’d just got on top of it when another uti struck and it’s back again. I’ve got a lot of treatment to hit it with again this week!
As for the urology referral, my GP is wonderful, and I was offered a referral last year but I was under Gynae awaiting a hysterectomy so I said I’d wait until that was resolved as I was a bit overwhelmed with everything.
I had my surgery in February and then a uti in April and I wasn’t really recovered. It’s only now I’ve been struck so bad last week and ended up in urgent care that my dr has said it’s definitely time for a urologist to be involved. I hope I don’t have to wait too long to see one now though!
So sorry to hear what you’ve been going through Kelly, and what you are still going through. And such a shame the yoghurt doesn’t work for you. It just shows how different we all are. Good luck with the treatment this coming week and I hope the Urologist gets to the bottom of our UTIs. I’ll be thinking of you! X
It’s likely ecoli. You of course are super sensitive. No one likes this remedy but it works. My daughters and I and most of my older female patients do this regularly.
1/4 tsp baking soda
4oz warm water
Drink twice daily during symptoms and once daily when not having symptoms. This keeps all your flora and fauna in your lady regions in the perfect zone. It also helps keep thrush away and it helps with GERD.
It’s like brine but you get used to it.
Also a thin layer of vaseline on the affected areas prior to swimming can help.
Yes, I have taken bicarbonate in warm water during acute episodes but didn’t know the quantities of each to mix so am grateful for the proper ‘recipe’. So you recommend taking it daily? It does taste disgusting but if it really helps, it is a very small price to pay.
Good idea re the Vaseline too. I’ll give it a go once my new waterproof swimwear arrives - a case of belt and braces!
I think it depends on how bad you suffer from any of the symptoms. When my adult girls go on vacation they start twice a day the day before. They have issues monthly so the daily is helpful for them. My older ladies do better on a daily swig. It just keeps you in homeostasis.
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