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UTI's

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wintersocks
wintersocks Member Posts: 434

Hi everyone,

Just really reaching out for info on UTI's and AI's. I am on Letrozole and have yet another UTI. I have to pick up my abx tomorrow. I had a gynae op about a year or so ago and developed internal adhesions, I was told this was as a result of lack of oestrogen. But I keep feeling that my bladder is not emptying properly.

I was rx'd Vagifem, which is a small out of oestrogen by pessary, I was too scared to begin the course because I am highly oestrogen +. However, out of desperation, I have started the course, because I am having UTI's monthly. I am not convinced that it is entirely the AI's.

The skin in my ladybits. is sore, kind of stinging and seems very fragile.

Anyone else had this?

I have an appointment to see the urologist on the 22nd.



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Comments

  • Tomboy
    Tomboy Member Posts: 2,700
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    I did have a UTI after about a year of A.I.'s, and I had never had one before. I have gone back and forth on tamox- femara, tamox arimidex, and I am back on tamoxifen, which I am going to try and stick to. Even if it means I have to see my ob/gyn more frequently. My onc and his nurse at first were really reluctant to prescribe something to me for all the vaginal problems that I was having for the first time in my life, and then they almost demanded that I start estrace. I have a tube, but I almost never use it, because I thought it might make my fibroids grow bigger. Those were supposed to go away after menopause, but they never did. So when I did see my gyn at my ca center, I had told him about my feeling of not emptying my bladder alll the way too. So, when the sent me to the urologist, they checked that, and they said about a teaspoon, about normal, and no answers as to why now.

    Yes, i have less estrogen than a full grown man when it was checked, and they did explain that it can change the ph of your vag, and the ais make you more susceptible to them. I have been thinking that i will go ahead and start using the cream, because they assured me that it would help, that I wouldn't have to use it long, and that the results would be long lasting. And that it really isn't absorbed systemically, very little in fact, it mostly stays local. because I want to have sex again, without feeling I am being shredded.

  • wintersocks
    wintersocks Member Posts: 434
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    Hi Tomboy,

    Thanks for this, it's really useful. I wonder if I can just clarify one or two things? The not feeling you are emptying your bladder thing (so irritating this, running back and forth to the loo). Do you mean you are actually retaining urine? My gynae told me to change position to get it all out! I mean how many positions can one adopt having a wee?? I leant forward, but still the feeling persists. Not tried standing on my head yet Winking

    I have just looked up Estrace and it seems similar to what I am prescribed (Vagifem), but in cream form. I would be interested to know if you feel it works? I am very worried about having any oestrogen as I am 8/8, but I simply cannot continue like this. I was told that the amount absorbed is negligible too.

    Sex?? I think the 'shredded' term you use is spot on. I do not now have a partner, but I am pretty certain that sex would be out of the question. I just feel too sore.

    Hate, hate all the other stuff that goes along with BC

  • wintersocks
    wintersocks Member Posts: 434
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    Hi Jo,

    That's interesting about the inflamed urthrether , I wonder if that is what is wrong with me, I am literally getting these UTI's approx once a month now.

    I will try the wet compress, as I now feel desperate. What is a sitz bath??

    The Vit e, do you just use it topically , externally? Does this work for you? I really do not want to use oestrogen products at all but I feel desperate now. I have been given a different abx this time. Maybe the same abx is not knocking it out?

    Thank you so much for your response, this is really useful and gives me other options if I cannot get on top of this.

  • coraleliz
    coraleliz Member Posts: 158
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    What helps me with urethral inflammation is Uribel. It turns the urine blue. It requires a Rx. I also take Prelief, it's a form of calcium that is suppose to make urine less acidic. Also on Estrace cream. All prescibed by a urologist. My urologist says "breast cancer patients need to take care of their vaginas". What I'm doing seems to help. Long bike rides are now possible.

  • wintersocks
    wintersocks Member Posts: 434
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    Hello Ladies,

    Thanks for all your help and advice. I have seen the urologist and he wants me to have some urodynamic tests with contrast, He thinks the problem is coming from a tape that I had fitted last year, to stop my stress incontinence. Meanwhile I have another UTI now. I am cross because the gynae rx'd Vagifem, which has Oestrogen in it. So I have stopped that forthwith.

    He says a small op will sort it. I so hope so. I don't feel like I can tolerate this much longer...


  • Lily55
    Lily55 Member Posts: 1,748
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    MY ladybits were awful, i could not even bear them being touched...............and they bled on examination.........I was beginning to despair so I know how this feels but things have improved without any creams..

    I changed my diet radically, take double the amount of Omega 3, but the thing that really made a difference was using lots of chia seeds made into a pudding with organic coconut milk - you literally just whisk them together to the density of seeds you want, can add cinnamon or cacao (nnot cocoa) to it for taste, put in fridge overnight and serve with fresh fruit. It has lots of omega 3 in the seeds that are easily digestible and loads of medium chain fatty acids in the coconut milk........after two months of doing this a few times each week (I eat it as a treat) the skin and tissue down below is loads better, more flexible, softer and no longer feels like sandpaper when I walk.....

  • ck55
    ck55 Member Posts: 28
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    I was having UTI's constantly (like one every 3-4 weeks) and it was driving me insane! Also sex was a nightmare. I was on Femara at the time and all of it was definitely due to lack of estrogen. My onc allowed me to use the estring and monitored my estrogen levels occasionally. They stayed low and all of these problems disappeared. Then suddenly my estrogen spiked and I yanked out the estring. I had about a year left to complete my 5 years on Femara. The UTI's stayed away, but the dryness returned. When I completed the 5 years, my onc and I decided to do 5 (maybe more?) years on Tamoxifen. And because of the way Tamoxifen works, I can use the Vagifem without too much concern. Things are much better now and I am only using the Vagifem once every week to week and a half. Quality of life is a big one for me!

    Good luck.

    Cyndi
  • wintersocks
    wintersocks Member Posts: 434
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    hi Cyndi,

    I am so fed up a I have another one and was at the hospital yesterday and now have abx again. I went to the A&E, and he told me I had to wait until the urodynamic test. I so hope it comes through this week. I am literally getting them every 3 to 4 weeks too. It's so awful and uncomfortable isn't it? I am desperate for them to stop.

    It is very interesting in what you say about your experiences, I too am on Femara and coming up to nearly three years. My gynae said as you do that lack of oestrogen is causing it to atrophy. He prescribed Vagifem. I have since stopped that as I am scared to use it since I am 100% er. However I used it for about 2 weeks. But I also had a tape fitted that stops stress incontinence and since then I feel like I cannot empty my bladder properly. Did you have this feeling too? I am unsure what estring is?

    Can I asked how come you were switched from Femara to Tamoxifen? I thought Tamoxifen was for pre-menopausal ?

  • ck55
    ck55 Member Posts: 28
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    Wintersocks,

    I switched because I had completed the "recommended" 5 years of AI therapy, but didn't want to lose that safety net. I was also 100% ER+. My onc and I do discussed it and we both felt that adding 5 more years with Tamoxifen was reasonable. Plus, I had to do something about the dryness and with Tamoxifen we both felt better about using the Vagifem.

    Also, I feel much better on Tamoxifen overall! No more sore feet and aching joints. Yay!!
    I will stay on this as long as I can.

    No I did not have the feeling you describe about not being able to empty your bladder. I would have to wonder if the tape is causing the feeling as well as contributing to the UTI's? You know one cause of UTI's can be not emptying you bladder completely.

    Keep us posted. I am sure you will get it all worked out!

    Cyndi

    Cyndi
  • wintersocks
    wintersocks Member Posts: 434
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    Cyndi,

    Thanks. I am feeling a little under the weather and still have symptoms despite the abx. I have decided to call the urodynamics dept if my letter has not appeared by Weds. I am worried I might be getting kidney damage. Externally, I feel sore too = stingingSad

    Thanks for your help and advice.

    Ws x


  • wintersocks
    wintersocks Member Posts: 434
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    Another UTI...

  • chisandy
    chisandy Member Posts: 11,327
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    I haven’t had one in >35 years, but I’m terrified now. In my case, I was warned UTIs were the most common bacterial infections to travel through the bloodstream and set up shop in the “biofilm” surrounding joint implants--causing them to have to be removed and replaced with abx-eluting plastic spacers, which means more surgery, more pain & rehab, and more risk of infection & DVT. And I cannot take the most common abx that works for UTIs, Bactrim....because it is a sulfa, to which I’m allergic. (Allergic to penicillins & Cipro, too--one reason that chemo was contraindicated for me even if my OncotypeDX score had been intermediate rather than low).

  • Molly50
    Molly50 Member Posts: 3,008
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    Wintersocks, I had chronic problems with UTI's due to atrophy until I made some changes to my diet and used vaginal estrogen cream. After breast cancer I switched to vaginal moisturizers instead. The diet changes was to get rid of the inflammation in my bladder by following the IC elimination diet. I was not diagnosed with IC but had the symptoms. I eliminated acidic foods and drinks from my diet beginning with coffee, tea and soda. I also eliminated all citrus and spicy foods. It really worked wonders to calm my bladder and cut down on UTI's. I probably get maybe one a year now.

    IC Network

  • wintersocks
    wintersocks Member Posts: 434
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    Molly,

    That's sounds a fantastic result for you although a lot of effort on the food front, I am a Coeliac with some lactose intolerance so the idea of cutting even more foods out is really depressing, but I might have to give it some thought. Is there a name for the vaginal oestrogen cream? I might ask the doc about this.

    I am now o the 2nd lot of abx as the 1st ones did not clear it up. by Friday I was vomiting with a temperature again. Last year I ended up with sepsis from a UTI. This is by far the worse side effect after 4 years on Letrozole. I am feeling desperate about it at times.

  • wintersocks
    wintersocks Member Posts: 434
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    I am going to look back over this thread again to see if there is anything that might help as I am back on antibiotics today for yet another UTI, I feel like the urethra is inflamed so I am going to try the hot compresses. as I am in such a lot of discomfort. I am due to come of off Letrozole and onto Tamoxifen mid summer 2017. I wonder if I should get that brought forward as the UTI's are back monthly again.

    I am so sore and burning around the area in general, it must be lack of oestrogen that is the cause. Perhaps I should see my BS and discuss with her, this is so depressing to live with.

  • dtad
    dtad Member Posts: 771
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    Hi guys. I have IC and take supplements for it that really help. Lack of estrogen definitely makes things worse and can trigger it. Please PM me if you want to know more. Good luck to all...

  • Molly50
    Molly50 Member Posts: 3,008
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    wintersocks, the estrogen cream is Estrace. Ask your doctor if you can use a small amount each month. Have you tried coconut oil for the atrophy? I try mixing things up. I used KeyE vitamin E suppositories, a moisturizer meant only for the outside tissues (can't remember the name right now bought it at CVS) and am planning on adding in coconut oil in between.

  • wintersocks
    wintersocks Member Posts: 434
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    Hi Molly.

    Ok, that's great thanks for that name. I will see if Estrace is available in Britain. The emergency nurse has given me a tub of cream (usually used for baby nappy rash (or as you say diapers!)

    I have heard good things about the coconut oil, and I will look into getting some.

    dtad, I was told IC too, but I did not have this before breast cancer, so I am assuming it is the letrozole/menopause.

    I am very uncomfortable still today, but was told to give the abx 3 days and go back if it was not improving,

    Thanks for the help and advice.

  • mkkjd60
    mkkjd60 Member Posts: 136
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    I had so many UTIs and the Urologist told me to use over the counter Replens. It has worked very well and no estrogen

  • wintersocks
    wintersocks Member Posts: 434
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    Back to the doc's today, as the uti has not gone, so I have another course of abx and then to take them prophylactically, he said to resume with the Vagifem pessaries. To see a female GP for an exam to make sure there is no kind of prolapse,

    I have ordered Replens.

    I am fed up.

  • wallycat
    wallycat Member Posts: 1,277
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    Have you tried D-mannose? It is a supplement that is supposed to prevent bacteria from sticking to the urethral wall.

    I have (knock wood) never had a UTI.....yet. My twin had a radical hysterectomy and within a year, constant UTIs. She is using premarin cream at below the recommended dose and since then, zero UTIs. I'm sure the lack of estrogen is affecting the urethra and no doubt the bladder itself, never mind any flora changes.

    After being on 3 rounds of antibiotics for a dental issue, my gut has not been the same. I always worry it is more than just that, but at some point, I have to let it go.

  • wintersocks
    wintersocks Member Posts: 434
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    Wallycat,

    Thanks

    I have looked this up, very interesting. I am going to work through these suggestions one at a time,

    I am feeling quite desperate about it, it;s just non stop.

  • wintersocks
    wintersocks Member Posts: 434
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    I have a year's supply of Replens! starting tonight along with taking abx prophylactically until further discussions at the next appointment with the GP.

    I so hope this works!

  • coraleliz
    coraleliz Member Posts: 158
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    My urologist believes I have IC, just not a really bad case of it. When I started on Tamoxifen, my infrequent problems got worse. I actually developed incontinence. I recently completed 5 years on Tamoxifen, the incontinence went away about a week after stopping the drug. Uro thinks it was the Tamoxifen's effect on my bladder causing my IC to worsen. I also was using Estrace every other day(it was prescribed daily). I used another drug, Uribel, that helped with burning/stinging whether or not I had a UTI. Uribel will turn your urine blue but without it I never would have slept. I also took Prelief, a type of calcium that's suppose to make your urine less acidic. I didn't really notice it helping much, so took it only during bad times when I was desperate.

    I'm able to drink tea again. I haven't tried carbonated water/beverages. Don't want to push m luck.

    I'm surely menopausal by now, but I just don't think my numbers warrant another 5years of anti-hormonal therapy(AIs).

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
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    I'm on Femara (letrozole) and had similar issues. I was angry enough about the vaginal issues, but the pain and burning during urination was too much. I used the EString for about 3 months, but it had very little effect on me. I could feel the difference in my tissues where the ring was situated but the "openings" were still hurting. Ladies, please don't be afraid to use Estring. Preliminary studies show it is safe and UTIs are serious afflictions.

    I finally found relief with two products and when I say relief I mean, finally, I can have sex without pain. The first product I ordered on Amazon. It is called Bezwecken OstaDerm-V. I read on this site that Bezwecken made a natural estrogen cream but I could never find it and I wasn't sure if it was taken off the market. By reading hundreds of Amazon reviews, I decided OstaDerm-V could help. Just a pea-sized amount at the opening or just inside the v. I have tried Replens, Vit E, coconut oil, and many others; I've ruined my lovely undergarments and organic cotton sheets with all that grease! Talk about a mood spoiler. I'm thrilled with OstaDerm-V. No more pain.

    The other product is Dr. Soother's Healthy Wipes. They are specifically for preventing UTIs. The doctor who developed these wipes is a dear family friend and the head of ob/gyn at a local hospital. He's helped hundreds if not thousands of women. The Dr. Soother's line also includes a skin spray for body skin (not vagina). I'm mentioning this because eczema is another side effect of estrogen loss. The spray helped stop my skin burning and itching. You can buy these on Amazon too.

    These were life changing products for me. Try them!


  • Molly50
    Molly50 Member Posts: 3,008
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    The Ostraderm V I found has Estriol and progesterone so check with your oncologist first . Mine is dead set against using any hormones .

  • ardyrankin
    ardyrankin Member Posts: 2
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    I'm been on Letrozole for 3 year and started having UTI's frequently last year

    I started taking D-Mannose 1 capsule 2 or 3 times a day to prevent UTI's and

    it works. If I start to feel like I'm getting a UTI, then I just start taking a capsule

    every hour or two until that feeling is gone. Drink plenty of water with it because

    it flushes the bacteria out of your bladder.

  • wintersocks
    wintersocks Member Posts: 434
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    I have a UTI from hell (again) had to go to hospital and I am on another abx. Feeling quite unwell and so down from this. I wonder if it will ever stop.Sad

  • dtad
    dtad Member Posts: 771
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    wintersocks....so sorry you are suffering from a UTI. I know it can be miserable. Hope you are feeling better soon. Take care

  • wintersocks
    wintersocks Member Posts: 434
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    dtad

    I really am so miserable with this (again). Thanks for Stopping by, it means a lot.