Posted , 7 users are following.
are urine infections linked to LS at all?!
i had never had a urine infection in my life and then i get diagnosed with LS and i have had 4 in the last year. really painful though like they knock me out for a few days, abdominal cramping, feeling like death, pain passing urine. its horrible. just wondered if there is anything i can do. maybe its not linked at all but most rubbish things are linked to LS lol!
0 likes, 8 replies
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frances6666 emmy2018
Posted
Hi Emmy
Yes, they are.
I'm the same as you, never had one in my life but, looking back, I now know that it was the first manifestation of LS for me, (2015) but not diagnosed for another two years.
I get them fairly regularly. I was told by a Urologist, last year not to sit in a bath anymore because it is a major cause of bacterial transmission. So showers only now, and it has certainly reduced the reccurence of infection
I now get antibiotics on request from the GP.
Hope this helps.
F.
SnappyCat frances6666
Posted
Frances, I do baths, but haven't had trouble since I've been using the D-Mannose and Probiotic (see my post below)...but also, my dermatologist suggested that when I do the bath to use a capful of hibiclens in the tub. It has the added benefit of cleaning the jets in my tub.
emmy2018 frances6666
Posted
i just knew it! LS is the gift that keeps on giving!! i never have baths. yes i do the same just call up ans request antibiotics because i know what it feels like now. but then antibiotics often flare up my LS so what joy!! xx
SnappyCat emmy2018
Posted
Hi, Emily! Yes....as a matter of fact. I've heard several possible explanations...but bottom line is, Yes.
So, someone over on the Facebook group suggested D-Mannose (it's a supplement). I looked into it and ordered a bottle (1500 mg). I take 1 every morning. If I feel the slightest hint of UTI type symptom, I pop one immediately and will take 3 or 4 in a day, then back off to 2 a day, then back to 1 a day. Have not had another since. (fingers crossed).
Also, my dermatologist suggested a "good" probiotic when I mentioned it to her. I said, what is "good"? She said, anything that does not require refrigeration. I got some capsules that my husband had from amazon (not cheap...like $35 for 90)...anyway, within 24 hours, my bladder felt different...I'm taking one every day (the bottle says 3 is a dose, but 1 seems fine).
emmy2018 SnappyCat
Posted
LS is ruining my life i just feel so low about it at the moment and like i can only talk to strangers on the internet about it because its taboo cus its my private parts, the relief i feel when you all understand or have the same issues is immense. i knew the urine infections must be linked
thank you so much i will try the supplement and a probiotic and see if that helps xx
SnappyCat emmy2018
Posted
Emmy, Good luck! I think the D-Mannose will help. I feel like I'm not waiting for the next shoe to drop with it...well, I do, but not every second of every day...
Also, you might talk to your doc about adding tacrolimus to your regimen. I do both steroid and tacro with VERY good luck. Oh, the other thing that is part of my routine is a prescription for Nystatin. I was finding that I was prone to get the occasional external yeast. At first sign of that, I dab on a little Nystatin and it never takes hold.
Between the LS, the UTI and the yeast I was at my wits end in the summer...but I feel like I've got some degree of control back. Oh, I also use vitamin e oil as my barrier/moisturizer. Gotta be sure it doesn't have other oils in it. I buy capsules from Sam's club. Best part...it is so thick and sticky that it stays on all day long...no reapplying.
vickie00010 emmy2018
Posted
I did have a few UTI before I was diagnosed with LS...had some yeast infections also...when u urinate it helps to pour some warm water over your vaginal area as u "pee pee"...it cuts the acid and stops most of the burning...doctor put me on an some meds (for the yeast infection) and it cleared right away...I now an on Estrace (for vaginal dryness) and clobestasol (for the LS) and have had no issues for a few years now...the clobestasol is a steroid but I now only use once a week...
beverly52803 emmy2018
Posted
emmy, I found this site 4+ years ago when I was diagnosed with vaginal atrophy (AV). Noticed a lot of women complaining about UTI's and some mentioned being diagnosed with LS. I felt fortunate that I was not experiencing either but kept reading as I was concerned that the AV might get worse. I chose not to use hormone cream at the time due to breast cancer in my immediate family. Three years later I was told I had LS. I can't help but think that all of us who are post menopause have various stages of AV and possibly all of us with LS have it due to AV.
I now use hormone cream every night (mixed with a little nystatin), a steroid twice a week and recently have added tacrolimus 5 days a week. Jury is out on the latter (follow up with dermatologist in a couple of weeks), but I was having to use too much of the steroid and was the only possible option (as I got nowhere with PRP).
Maybe if you can get the deterioration of the tissue under control you will be less apt to get the UTIs, though certainly some of us are just more prone to them than others.
Would definitely try snappycat's recommendation of D-Mannose as taking a lot of antibiotics is not a good thing. Cranberry juice with NO sugar added is also supposed to be helpful. I've only had a couple of UTIs in my life many years ago but one was so bad I couldn't walk. It's all a balancing act with our bodies now, but I think you can get the UTIs under control...and hopefully the LS as well.
Good luck.