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UTI's

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  • corky60
    corky60 Member Posts: 453
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    I gave up the AIs due to the SEs. But I still have urovaginal atrophy, with plenty of UTIs. So I see a naturopath who prescribed estriol suppositories, 1 mg. Since then the UTIs have been less frequent. I tried Vagifem and it did nothing for me.

    I also see the only dr. in this area who administers the Mona Lisa touch and she said that I'd still have to use estrogen even if I had the treatments.

  • wintersocks
    wintersocks Member Posts: 434
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    Just seen this reported in a news paper here in Britain, about a vaccine for UTI's.

    http://www.eusupplements.europeanurology.com/artic...(17)30206-3/pdf


    All the best for a Happy New Year and may 2018 be good for us all!



  • wintersocks
    wintersocks Member Posts: 434
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  • katcar0001
    katcar0001 Member Posts: 321
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    Gosh, I would like to get the vaccine. I am excited to try Bladder Q, though. I wish I could get it now but will have to wait until I am back in the U.S. on Jan. 11. It will be waiting for me from Amazon ;-).

  • wintersocks
    wintersocks Member Posts: 434
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    Katkar,

    I will contact the hospital to see if they want any patients for a further trial. It's not a hospital near me tho. Still it's worth a try as a desperate measure.

  • katcar0001
    katcar0001 Member Posts: 321
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    Wintersocks - That is incredibly sweet and thoughtful of you. Don't knock yourself out unless you are interested in participating. The chance that they would accept someone who is spread all over the planet between Mexico, California and New Zealand is probably zilch. But I would like to track the progress of this trial. I really hope that such a vaccine gets approved and produced as it would be a life saver for so many women.

    Happy New Year ! :-)

  • katcar0001
    katcar0001 Member Posts: 321
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    After 8 weeks of misery, finally got rid of the bladder infection which was the mother of all UTs I have ever had. Symptoms kept hanging out for a couple of weeks afterwards, so I ordered and started using PreMeno Duo. What a gift from Heaven. I had to get it from Europe through EBay, but apparently it is available in NZ where I am going next week. I am stocking up! In addition to relieving the sand paper feeling in my lady parts, it seems to have helped heal me from the bladder infection aftermath. No more urethral or bladder spasms or feeling like I have to run to the bathroom every 5 minutes. No more stinging cactus bladder! I am still going in for a MonaLisa Touch consultation next week, but this stuff is amazing! And best of all--no hormones. I wonder if I should tell my doctor about it? The one who prescribed Vagifem? I am just stunned that it is not available in the U.S. It seems cheap compared to Vagifem and does not require a prescription!

  • jaycee49
    jaycee49 Member Posts: 1,264
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    I don't think I have ever posted in this thread, God knows why. I've had tons of UIT's. I found the PreMeno Duo on Amazon.

    https://www.amazon.com/Premeno-Duo-Vaginal-Ovules-Rehydration/dp/B002WDTJLE

    It looks pretty pricey to me. $36.35 for 10 ovules. $3.63 a pop. My favorite right now is Luvena, about the same price-wise. I'm going to go find a post I put in the Ibrance thread that was ignored by that group because they have no idea what recurrent UTIs are and do to your psych. Be right back.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Someone on the Ibrance thread asked about UTI's as a se of Ibrance. I answered with this:

    "I've had recurrent UTIs for years and years, since menopause. I had them non-stop on Tamoxifen. (8 months) My opinion is that they are caused by the estrogen suppression drugs (Tamoxifen, AI's, for most of us letrozole) that dry out your urogenital (my new favorite word) area. I used topical estrogen (Vagifem) for years and no UTIs. Then came ER+ cancer. No more estrogen. Now, I attempt to moisturize the area with various products, the best being Luvena (expensive as heck) but it works. I also use boric acid vaginal suppositories to balance PH to avoid yeast from taking antibiotics for UTIs. I just started using a vitamin e suppository that has coconut oil and palm oil. Do I put something in my vagina every night? Just about. I don't think it is a se of Ibrance. It is estrogen suppression. (IMHO)"

    I'm ok right now but just sit and wait for the next onslaught. My problem is I get UTI sx with a negative culture. Depending on the doctor, they either decide you are crazy (psychosomatic sx), give antibiotics with no sensitivity data (not possible anyway with negative culture) or just say (like my now former MO), "you don't have an infection." Then my urology NP gives me antibiotics and the sx go away. Did I have an infection? I had three "negative" culture in December. All showed >100,000 CFU (colony forming units, I love when they make up names for things that make no sense). Some had contaminants like genital flora. One had 40,000 CFU of a real bacteria. Is that enough to get a positive culture? NO. Must be >100,000. Mine were >100,000 but all types of CFU's were added up to get that. Must be >100,000 of a real bacteria, like e coli, etc. I saw my uro NP last week and she does NOT think I am crazy. I will see my urologist tomorrow and ask him. He usually doesn't thing I'm crazy. He told me that 100,000 number is totally arbitrary. What if you had 99,000? Would that be negative? Yes, for most labs, it would.

    As you can tell, I've been studying and thinking about this for a long time. I've got more info from research I've read recently but this is long enough for now. Anyone else have UTI sx with "negative" culture?

  • Chiarara
    Chiarara Member Posts: 20
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    I have had many years of cystitis (on and off), due to endometriosis and the heightened pelvic inflammation it causes. I’m now having to be very careful with the Tamoxifen, which does seem to have increased the symptoms.

    Big personal triggers, I’ve learnt, are alcohol, citrus juice, carbonated beverages (especially if they contain citric acid), vitamin C supplements and I have to be very careful with ‘core’ exercises- for instance, I once got a doozy of an attack after doing twists at a yoga class! Brisk walking/slow jogging helps, I’ve wondered if it ‘flushes’ the area through (YMMV on that one).

    If I’m having an episode, I have to avoid all triggerscompletely, guzzle water, and follow a healthy diet (lots of brown rice, fish, yogurt and veges). I cannot have much of any of those triggers without setting off an attack, but over the years I’ve got better at catching it early.

  • katcar0001
    katcar0001 Member Posts: 321
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    My last urinalysis came up negative, but I had severe UTI symptoms for at least another couple of weeks after that. I did quite a bit of research, and I read about embedded UTIs. There are only a couple of doctors in the world that treat embedded UTIs, but they would definitely say you are not crazy. I think a lot of doctors just jump to the conclusion that one might have Interstitial cystitis, when really one might have one of these embedded bacteria hiding under biofilm. I believe it is worth looking into if you have continued pain and problems. I was going to go down that route further, but when I started using the premeno duo,, my symptoms went away almost overnight. It was truly miraculous. I continue to feel better and better everyday. Yes, I paid a lot through eBay, but it was worth every penny. I think it is cheaper in New Zealand, so I'm going to buy at least a six month supply when I go there. I have a bit of a theory, which may or may not be correct, but that is if monalisa touch rejuvenates the vaginal tissue, then I believe premeno duo might be doing something similar since it contains lactic acid, which I have used on my facial skin to encourage cell turnover. Or, it could be acting like a placebo... Whatever it is, I am just so relieved that I am practically jumping for joy.

    Edited to add that I took a complete ovule for 3 days, and then cut the ovule in half and that is working just as well. The instructions say that you can go on a maintenance schedule of an ovule every 3 days. So I am going to try a half ovule every 3 days. That makes it much more economical.

  • katcar0001
    katcar0001 Member Posts: 321
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    Here is more info on Premeno Duo. I remember reading about Sweet Louise on the Kiwi thread.

    New product helps Kiwi women with common discomfort:

    One of the least talked about symptoms of menopause is about to become much easier to treat with the launch of a new product this June.

    Premeno Duo are vaginal ovules for the treatment of vaginal dryness, a common and uncomfortable reality not just for many women during and after menopause, but also for those who may be breastfeeding, suffering from acute stress or undergoing chemotherapy.

    Developed in Germany, Premeno Duo is a non-hormonal treatment that heals and protects at the same time. Regular use ensures adequate vaginal moistness is maintained, easing women's discomfort and also improving sexual sensation.

    Brad Rodger, managing director of Premeno Duo's distributor Phoenix MedCare, says the new product is the most effective on the New Zealand market for helping Kiwi women with the sensitive issue.

    "Premeno is more effective than other non-drug alternatives and is almost as effective as hormone-based therapies," he says. "It also has a vastly superior safety profile compared to the alternatives."

    As well as reducing the risk of bacterial infections, Premeno Duo is also a preventive treatment for recurring vaginal fungal infections. Being a handy ovule it is easy to use, with no requirement for gels or applicators like other products on the market. Its long-lasting action also means it only needs to be used once every three days.

    And Kiwi women seeking to ease their symptoms can purchase Premeno Duo knowing that doing so is helping those who are living with incurable cancer. For every unit of Premeno Duo sold, Phoenix MedCare is donating $1 to Sweet Louise, a local organisation that supports women diagnosed with incurable breast cancer.

    Established in the memory of Louise Perkins, who passed away in 2004 after living with incurable cancer for a decade, Sweet Louise offers both emotional and practical support for members.

    Fiona Hatton, CEO at Sweet Louise, is thrilled to be officially partnered with Phoenix MedCare and Premeno.

  • corky60
    corky60 Member Posts: 453
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    Jaycee49, yes I've had symptoms of UTI with a "negative culture". My PCP would treat it anyway and the symptoms would go away. The last time I had a true UTI I had vaginal stinging and hardly any bladder pain. The symptoms seem to change as I age. In youth I would always have blood in the urine but not now. For awhile I had strands of mucus or pus in the urine but not now. It's hard to stay one step ahead of UTIs. I will say that they have decreased since I have been using estriol suppositories.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Chiarara, those are my triggers, too. I stay away from them.

    katcar, thanks for all the info in PreMeno Duo. I'll be on Amazon buying some today.

    Thanks for that corky. I can't use estrogen of any kind because of my ER+ cancer.

    I just came from appt with my urologist. Pretty discouraging. He pretty much thinks I am crazy and/or thinks there is nothing that can be done. He gave me literature for Ellura (again) and I remembered on the way home that I can't take that because it aggravates my gastritis. I emailed the president of the company (she's very nice) and she said, yes, it can aggravate gastritis. I told my urologist that I emailed the president of the company but he just thought I was showing off. I couldn't remember what I had emailed her about. He was fairly dismissive. I will only go to his NP in the future. He spent some time bad-mouthing cranberry after taking about Ellura. Does he not realize it gets it's strength from cranberry?

    I've decided I may have to spend some money. PreMeno Duo maybe, more Luvena, Ellura is high, too but worth a try? NeuEve is really expensive. Maybe try that. Uro did say to maybe stop using boric acid suppositories. Drying? Only use those when on antibiotics or signs of yeast. I'm right back in the spinning top of not knowing what to do and no one to help. New MO Jan. 31. New gyn soon. Both women. Maybe they'll have some ideas.

  • corky60
    corky60 Member Posts: 453
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    jaycee49, I too have ER+ cancer but I decided that it was quality of life that mattered. The pain and discomfort was overwhelming and causing chaos in my marriage as well. The estriol prescription is from my naturopath and is compounded by a pharmacy. I use it three times per week. I tried Vagifem but it did nothing. Estrace cream and Premarin made migraines worse. For vaginal pain I apply a mix of equal parts of lidocaine and aloe vera. My PCP recommended this.

  • Nancy618
    Nancy618 Member Posts: 318
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    I'm new to this topic, looking for some answers.

    Not sure if this is TMI, but after not having sex for quite a long time... ever since my surgery last March, my husband and I attempted it during the holidays. It was very painful for me, caused abrasions and then 5 days later a full blown UTI, >100,000 E. Coli. Macrobid for a week. Urine is now clear, no burning, no foul odor, BUT I'm still dealing with bladder pain and feeling like I have to pee every 15 minutes. From everything Ive read, it sounds like I have symptoms of interstitial cystitis. Relief comes if I drink a ton of water, and walk. I had a glass of wine this evening and I'm in pain again.

    I'm currently taking Aromasin after trying Femara and Arimidex, which gave me so much muscle pain. But now I'm wondering if the Aromasin is contributing to the cystitis.

    I did try Replens for vaginal dryness, but it stung. Might have tried it too soon after being irritated and during the UTI.

    I have a call into my doctor about the pain. We're leaving for a month in Florida soon and I really would like some relief.

    I really feel for all of you who have been dealing with this for a long time.





  • corky60
    corky60 Member Posts: 453
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    My PCP recommended a mix of one part lidocaine (prescription) to one part aloe vera. Insert in the vagina with clean fingers.

    Wine and other foods can be a trigger. You may have to avoid them. Some women drink d-mannose powder mixed with water and find that gives relief. Others swear by unsweetened cranberry juice, or cranberry capsule or tablets.

    Premeno has also been used by some. Amazon sells it but it may be cheaper on eBay. It comes from Europe.

    You will want to use a good lube for intercourse. Trial and error. You can try coconut oil, cocoa butter or others. Sliquid sold on Amazon is nice.

    I finally had to see a naturopath for the urovaginal atrophy. She prescribed estriol suppositories to be used three times per week and cocoa butter suppositories for the other nights.

    We have urovaginal atrophy caused by depletion of estrogen. The AIs make it worse. Complete hysterectomy can also cause it, as can natural menopause.

    I'm sure that others will chime in. There is hope. Some of us have doctors that treat for UTI even though there's technically no infection. Tell your dr. that you are going to be travelling and being an emergency supply of antibiotics with you.

    I'm so sorry that you've joined the UTI club but there is hope. Lots of trial and error may be involved, however.

  • Nancy618
    Nancy618 Member Posts: 318
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    Thanks for all the info Corky...

    I saw my PCP's PA this morning...some RBCs in the clear urine, but no WBCs, but they are culturing.

    He said he thinks it's the dryness that is causing trouble.Thinks even that the discomfort I'm feeling could be vaginal. Didn't give me any suggestions, but that may come when he calls back with the cx results, as he said he will also consult with my PCP.

    I tried cranberry capsules...and I think that's what made it worse. I didn't take one this morning and my discomfort is way down. If you have interstitial cystitis, it can actually make it worse because of the acidity. PA suggested trying Replens again. Also bought some really slickery lubricant by the same manufacturer if I ever get courageous enough to try intercourse again. :-)

    Fortunately, where we're traveling has a really nice urgent care clinic, so if I have worsening symptoms, I can always pop in there.

    Ugh...I am dry all over...skin, eyes, mouth and vaginally. I didn't have this with Letrozole or Anaztrozole, but then again, didn't attempt SI until recently either.

    Thanks again.


  • Chiarara
    Chiarara Member Posts: 20
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    Nancy618, I was talking to my brilliant naturopath yesterday, about my increased bladder issues with tamoxifen and mentioned I also had dry skin.

    She commented that, from her perspective, they are related, as both indicate that the body is having difficulty maintaining its membrane 'integrity' (in the bladder, urethra, vaginal space, that's a mucus membrane- she was saying the skin does something similar, with the oils it produces).

    Anyway, she suggested omega 3 fatty acids are very important to the integrity of these membranes, so I'm now taking around 10ml (2 teaspoons) per day to help with the dryness. It can take up to 4-6 weeks to see the full benefits, apparently, as this is how long it takes for the new cells made with the omega 3 to reach the top layer of the skin (where they form the protective layer on the skin).

    Oh, and definitely no wine, until everything has settled down for at least a week (for me, wine is a big trigger, as are soda drinks and vit C tablets or poweders, anything too acidic- so I am very selective. I prioritize the occasional wine and never drink soda!).

    Just thought I'd mention it.

  • Nancy618
    Nancy618 Member Posts: 318
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    Thanks Chiarara...


    I am sure the dryness is related to having no estrogen...as is the increase in memory loss, which is actually kind of scary. Anything that estrogen helps is going to be compromised. The PA said he thinks it's all medication related...the dryness, which leads to irritation, and irritated, dry membranes are more prone to infection as well.

    I have been taking Omega 3s for a very long time. My daughter suggested Krill oil, which I purchased, but am waiting until my other Omega 3s are gone. I'm also taking a multivitamin with biotin in it.

    I haven't had soda in years because it's just not good for you. :-) Is it any alcohol that's bad? I don't drink wine often, but I am a mixed drink user. Going to Florida for a month...did I already mention that?....and look forward to my Pina Coladas!


  • Chiarara
    Chiarara Member Posts: 20
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    Hi Nancy618- the main thing is the amount of omega 3s needed- 2 teaspoons and I notice a difference, but a few capsules doesn’t really do much!

    Alcohol- for me, it seems to be anything with an acidic pH that can be tricky. So pina coladas- hold the pineapple juice

  • katcar0001
    katcar0001 Member Posts: 321
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    Nancy, I was in so much pain even after my UTI cleared, that I was convinced I had either interstitial cystitis or an embedded UTI. Fortunately, after using the PreMeno Duo 3x a week and high lignan flaxseed oil mixed with coconut oil on the other days, I feel pretty normal. I will say that during the flare or whatever it was, that pain was worse after taking cranberry pills, drinking wine, drinking coffee or tea and eating spicy food. While that sounds like interstitial cystitis, I haven't had an official diagnosis, and I think it was just irritation from a really bad UTI and vaginal atrophy/dryness. These medications are wreaking havoc on me in other ways now. I have always had really strong teeth, and I take extremely good care of them, floss, etc. However, now I am suffering from the consequences of severe dry mouth. I lost a tooth two days ago, and I need two crowns on the other side. So, I'll be really glad when I finish out my "AI sentence." Only 4 1/2 more years to go :-(.

  • katcar0001
    katcar0001 Member Posts: 321
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    Ciarara- which omega 3 oil brand do you recommend? I assume it is fish oil, btw. I always worry about freshness and mercury/toxin levels. I use mega red krill oil right now, but I don't think I am taking enough.

  • 2FUN
    2FUN Member Posts: 789
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    katcar. I don't want to burst your bubble, but I've been reading studies that are recommending AIs for 10 years.

    I have gone almost 4 weeks without a uti. Hallelujah!

  • katcar0001
    katcar0001 Member Posts: 321
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    2Fun - I am doing 7. I figure my heart, brain and bones deserve a break. And that was the latest out of the San Antonio breast cancer conference late last year. Granted, the recommendations from that conference seem to change every year!

    Great news on 4 weeks without a UTI! Ihope I make it that long or longer. Flying to NZ tomorrow and nervous for my bladder sitting that long!

    By the way, I went for a consultation for the Diva vaginal rejuvenation, and it sounds even better than the Mona Lisa Touch! If only my wallet could afford it… I need a new tooth first!

  • corky60
    corky60 Member Posts: 453
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    When I was having so many UTIs my urologist at the time recommended that I follow the Interstitial Cystitis Smart Diet. It's a long one.

    Common bladder irritants are the four "Cs"--carbonated beverage, caffeine in all forms including chocolate, citrus products and foods containing high concentrations of vitamin C. And avoid alcohol.

    Certain foods may irritate your bladder. Among them:

    Cranberry juice, grapefruit and grapefruit juice, lemons, oranges and orange juice, pineapple and pineapple juice, strawberries.

    Chili peppers, pickles, sauerkraut, tomatoes and tomato products.

    Processed sandwich meats.

    Yogurt.

    Chili, horseradish, ketchup, salad dressings, soy sauce, vinegar, Worcester sauce.

    Alcohol, coffee, tea, carbonated drinks.

    Chocolate, Indian food, Mexican food, spicy foods, Thai food.

  • corky60
    corky60 Member Posts: 453
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    Levator ani syndrome.

    As a result of having so many UTIs I developed Levator Ani Syndrome. It is a tightening of the pelvic floor muscles and is very painful. Physical therapy can help. It is a special therapy takes extra training on the part of the therapist.

    Now just to make life even more interesting I've also developed a Diastasis Recti. As a result of abdominal surgery last summer I have atrophied abdominal muscles. Any yes there is physical therapy for that too but wouldn't you know, that therapy is contraindicated for Levator Ani Syndrome sufferers. So I am walking around with a bulging belly and look like I'm about six months pregnant. Woo hoo.

    Scared

  • Nancy618
    Nancy618 Member Posts: 318
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    OH my......a lot of you have been suffering.

    Got the official report that I do NOT have a UTI again. But I am still feeling bladder pressure and have to pee every 2 hours. The PA suggested Replens, which is a vaginal moisturizer, so not sure how that is going to help.

    I've been experimenting with diet over the weekend. I had alcohol....no increase in pain. I had tomato sauce, oranges, strawberries, cranberry juice, pickles. No increase in symptoms.

    Now last night was the first night I didn't have to get up to pee during the night, slept 6 1/2 hours straight trough, and had no bladder pressure when I woke up. I have minimal amount right now and all I had was oatmeal...with some strawberries...this morning.

    The Krill oil has 1250mg of omega 3.

    I'm frustrated. I don't like feeling like this. I am close to stopping AIs and seeing how I feel. Is the trade off of MAYBE not getting cancer again worth the diminished QOL?

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Nancy, the vagina is very close to the bladder/urethra, etc. The bladder and urethra also get dried out. The moisturizing products eventually get to the bladder/urethra. Moisturizing the vaginal area/urogenital area is what is needed to get rid of these symptoms, at least for me. I spent $80 on Amazon this morning on Luvena, Key-e, and PreMeno Duo, all for urogenital moisture. The estrogen suppression we use dries out that whole area. I can't use Replens because it has glycerin and that causes yeast. If you can use it, it is way cheaper than these other things I use. Getting rid of these symptoms is worth it. Don't give up on the AI you are on. I went from stage II to stage IV when I stopped Tamoxifen. Happened very quickly.

    Corky, I never heard of either of those two conditions. Sounds horrid. Can you do one type of PT then the other? Get the first condition under control so the other PT can be done. Just a thought.

  • Nancy618
    Nancy618 Member Posts: 318
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    Thanks for the info Jaycee...

    I did try Replens, but only once and it was while I had the UTI and it seemed to cause more burning. And if it causes yeast growth, I don't think I want that either as I have been prone to yeast infections in the past.

    I would order the other expensive stuff, but we're leaving for a month in Florida on Saturday and doubt that I'll get it that quickly. Guess I'll check though. Do you use all 3 of those at once???

    Notice some people had burning with the Luvena too.