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UTI's

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  • jaycee49
    jaycee49 Member Posts: 1,264
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    I don't use them all at once. I try different products different nights. I'm still experimenting. Trying to find the best solution for the least $$$. Right now, I am using Luvena every third night. The other two nights, I use Key-e suppositories. They have vitamin E, palm oil and coconut oil. The PreMeno Duo I haven't used yet but hear great things about it here. My order this morning will not get here for a few weeks. It comes from Europe. It is much cheaper from eBay, like half, but I'm more comfortable with Amazon. They have also been known to sell cheap imitation products. So nice being a guinea pig. It seems that MOs would know how to deal with se's of the drugs they prescribe. That is just not the case.

  • 2FUN
    2FUN Member Posts: 789
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    Corky, who said the 2 therapies are contraindicated? Yes, there is special training, I am a little familiar as I am a PT.

  • corky60
    corky60 Member Posts: 453
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    2FUN, my PT said that they were. She said that the diastasis recti (d. r.) exercises (in my words, pulling the belly button toward the spine) would also tense the pelvic floor muscles (which I am trying to relax and stay relaxed.) In other words, the d. r.exercises would aggravate the levator ani syndrome. I am experiencing this today. I did 90 of the d. r. exercises over the past few days and the pelvic floor pain has flared up.

  • 2FUN
    2FUN Member Posts: 789
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    wow corky, I didn't know that. Have you thought about having the manual release work done for the levator release? When I was taking a course they discussed it, bUT I just couldn't see myself seeing clients like us, so I didn't get further training.


    I have no abdominals to speak of after multiple surgeries. It's really starting to be a problem, as my back pain.wakes me up at night.

    I hope you get some relief from your problems

  • dtad
    dtad Member Posts: 771
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    Nancy...so sorry you are suffering. I have interstitial cystitis and its horrible! It feels like I always have a UTI. I take a prescription drug called Elmiron and a supplement called Bladder Q. They do help but when I get a bad attack it seems like nothing helps. It was one of the main reasons I refused anti hormones from the start. It definitely is made worse by a lack of estrogen. My urogynecologist told me that years ago when I started menopause. Yes QOL does matter and for me it was a no brainier but I'm certainly not advocating refusing anti hormones for everyone. We all have to make our own informed decisions. Good luck and keep us posted.

  • Nancy618
    Nancy618 Member Posts: 318
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    dtad: That's what I think the bladder symptoms are now....though each day, it's getting better.

    If it weren't for the DCIS that was still present after the second surgery, I wouldn't be taking the AIs. Definitely going to be talking to my MO in April about all this. Just printed out my pathology report, most of which I don't understand, and the Predict results (http://www.predict.nhs.uk/) and will take it along for him to explain.

  • Nancy618
    Nancy618 Member Posts: 318
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    I just ordered some Quercetin...it's the main ingredient in Bladder Q and a lot cheaper. Been reading up on all the benefits. I'm not sure any of them are proven, but I'm going to take it along on vacation to deal with ANY kind of inflammation I might have. It might even work for the muscle aches and pains we're experiencing.

    https://www.umm.edu/health/medical/altmed/supplement/quercetin

  • 2FUN
    2FUN Member Posts: 789
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    Nancy, I see you are from Sussex, I used to live in Milwaukee. DS just started at Marquette this year.

    You and I are almost cancer twins, except I had a few more surgeries. I had a lumpectomy, then I had endometrial cancer, then has a mastectomy b/c I had a lot of DCIS with the IDC, but they could not see the DCIS on the mammogram. I am now officially 4 weeks without a UTI and it is so nice. Here's hoping this is my new normal, and hoping we all have some relief soon.

    I don't know if I ever said I take glucosamine chondroitin, co-Q enzyme 10, 1000mg cranberry , D Manose, vit d, and a probiotic from Garden of Life (refrigerated) for urinary health.

    Have any of you heard of methenamine HPP. I think it may help keep infections at bay. I of course, broke out in hives taking it. I am alergic to EVERYTHING! (from the internet...ask your doctor)

    As the mandelic acid salt (generic methenamine mandelate, USP[7]) it is used for the treatment of urinary tract infection. It decomposes at an acidic pH to form formaldehyde and ammonia, and the formaldehyde is bactericidal; the mandelic acid adds to this effect. Urinary acidity is typically ensured by co-administering vitamin C (ascorbic acid) or ammonium chloride. Its use had temporarily been reduced in the late 1990s, due to adverse effects, particularly chemically-induced hemorrhagic cystitis in overdose,[8] but its use has now been re-approved because of the prevalence of antibiotic resistance to more commonly used drugs. This drug is particularly suitable for long-term prophylactic treatment of urinary tract infection, because bacteria do not develop resistance to formaldehyde. It should not be used in the presence of renal insufficiency. Methenamine in the form of cream and spray is successfully used for treatment of excessive sweating and concomitant odour.

  • dtad
    dtad Member Posts: 771
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    Nancy...great idea! I'm going to look into getting Quercetin. It is very expensive and I go through 2 bottles/month. Good luck and keep us posted.

  • Nancy618
    Nancy618 Member Posts: 318
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    2Fun: I was born and raised in Milwaukee and I graduated from Marquette way back in 1973. I sure couldn't afford to go there now!!!

    I actually stopped taking the cranberry capsules because it made my symptoms worse...which makes me think I might have interstitial cystitis.

  • coraleliz
    coraleliz Member Posts: 158
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    My urologist told me I have interstitial cystitis. It got much worse on Tamoxifen. But since I no longer take that or any other anti-hormonals it's much more manageable. I have found some triggers. I respond well to a drug Uribel. When my bladder symptoms keep me awake, I can get relief from this. I can also go weeks without needing it.

    I can't tell you how many UTIs I was treated for that I didn't have over the years

    Scared

  • 2FUN
    2FUN Member Posts: 789
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    Nancy, we were lucky DS is getting a VERY generous scholarship (which he worked very hard to get) We have driven the 1600 mile round trip to visit for a 3 day weekend!

  • katcar0001
    katcar0001 Member Posts: 321
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    I thought I would share a couple more things that work for me. I have had a flare which tells me I probably do have interstitial cystitis. Diet, diet, diet. I have been eating too many tomatoes. I probably should not eat them at all. Buscapan helps the discomfort tremendously. Also, I could not find Premenopausal Duo yet in NZ, but I found Aci-Jel from Australia. It is about $32usd for 20 applications of a cream that is meant to balance acidity. I use a half dose and that works well to keep me moist. I think that I could get away with not using it every day and will experiment with intermittent applications

  • corky60
    corky60 Member Posts: 453
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    I have another UTI.  The last one was ten weeks ago.  I get a lot of vaginal pain along with urinary tract pain.  I went to a walk-in clinic Thursday last week with the pain symptoms but the labs were negative so they wouldn't treat me. Four days later I went to my PCP and this time the labs were positive so I have cephalexin now.

    So tired of this.  I have tried the Premeno Duo just once but so far no relief.  Amazon's UK website has a few reviews of this product.  Interesting reading.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Corky, did you mean you used one ovule of Premeno Duo? That won't do anything. Think of your urogenital area as a completely dried out sponge. Using one Premeno Duo is like pouring a teaspoon of water on the sponge. It will only get moisturized if you keep adding more water. It takes weeks/months to rehydrate that area. Before cancer, I used Vagifem (topical estrogen) and it took four months for me to back to normal. Now, I use something every night. It has been about six weeks and I feel like I may be getting there. It takes a lot of persistence. Some nights I say, maybe I'll just skip one night but I don't. I can't. I can't feel like that again. I'm spending a lot of money but worth it so far.

    My cultures would be negative at first and then come back positive a few days later. We know our bodies best. I read an article once where the author concluded that if a woman feels like she has a UTI, she probably does. The walk in clinic probably just did a dip stick test which is very preliminary and different providers read it differently. The second one was probably a culture which is more definitive. If a culture is positive, they will run sensitivities to see what antibiotic will work on the bacteria you have.

    I only found one review of Premeno Duo in Amazon UK. It was neutral.

  • dtad
    dtad Member Posts: 771
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    corky...so sorry you are suffering another UTI. Excuse me if I already told you this but have you tried D Mannose in leu of an antibiotic? It really worked form and I was able to avoid an antibiotic. Good luck and keep us posted.

  • corky60
    corky60 Member Posts: 453
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    jaycee49, the second doctor did not do a culture, just an in-office test.  They send the specimens to a lab to be cultured.

    I will not be using any more Premeno Duo.  The package insert stated that it might burn due to lactic acid.  Boy did it ever!  Lactic acid is one of the "duo"; the other is hyaluronic acid. I now have a chemical burn on those delicate tissues.  The skin that can be easily seen looks all blotchy, is sticky and hurts like the dickens!  There were some bad reviews on the UK Amazon site, with complaints about burning.

    The d-mannose does nothing good for me and sometimes seems to make things worse.  I am a delicate creature, it seems. Sad

    https://www.amazon.co.uk/Premeno-Duo-Vaginal-Ovules-Rehydration/product-reviews/B002WDTJLE  

    Look at the one-star reviews.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    DH laughs at me because I always read the bad reviews on Amazon. They are the ones that really tell the story. I figure the good reviews are written by relatives of the sellers/product developers. Sounds like the lactic acid is a problem for some people, like you. I hate it when people say everyone is different but it seems to be true. I can use 625 mg of boric acid every night for a week and be fine, even better.

    corky, some of these products have an acid to balance PH. I use boric acid suppositories (625 mg) all the time. I have a huge problem with yeast from taking so many antibiotics. If you don't have a problem with yeast, I use one product that has no acid called Key-E that had coconut oil, palm oil and vitamin E. It is way cheaper than the others, too. And Replens may not have an acid but it does have glycerin which can cause yeast, too. With your cancer situation, maybe even topical estrogen like Vagifem could be used. Have you discussed this with your gyn or gone to a urologist? When I have a series of UTIs, I go to both just to feel like I'm doing something proactive. At least that makes me feel better, mentally. I hope the sensitivity study of your recent culture show that the cephalexin will work.

    Key-E at Amazon

    Edited to say, I just looked. Replens has sorbic acid.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    corky, if you are not having any luck with vaginal moisturizing products, maybe another approach would work. I've mentioned this once here. ellura is supposed to prevent bacteria from sticking to the bladder wall, like cranberry juice, but this is MUCH stronger. Has these PAC things. It messes with my stomach (gastritis) but maybe you can take it. Again, expensive. Available from Amazon but you get a discount on your first order from their website.

    https://www.myellura.com/

  • corky60
    corky60 Member Posts: 453
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    Thanks jaycee.  Ellura says it contains PAC, the same ingredient deep within cranberries.  Since cranberries cause a problem I wouldn't want to try Ellura.

    I have one of the best urologists in the area and a great naturopath too.  She prescribes Estriol suppositories.  They are in a cocoa butter base, one mg. Estriol three times per week.  The other nights I use just plain cocoa butter.  I tried Vagifem for five months and it did nothing for me. I used to use Key E until I became sensitive to topical Vitamin E.  Replens is nasty; it contains glycerine.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Well, corky, you'e used up all my ideas. I'm looking at something now called Ladybits Jelly. It does have an acid, though.

  • katcar0001
    katcar0001 Member Posts: 321
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    Thanks for keeping up a good discussion, and I am interested in some of these other products. I do find I regress if I don't use either the Aci-gel or the Premeno Duo every other day, at least. I wish these products were not so expensive. As for burning, I get very mild burning once in a while but I figure it is like using lactic acid on my facial skin which I have done in the past to increase cell turnover. I think in this case it helps stimulate our own secretions while the hyaluronic acid soothes. I am sorry to hear that some people cannot tolerate it. We are indeed all different. I am surprised I am not in the intolerant category as I have very sensitive skin. Lactic acid is one of the more mild acids that can be used on the skin other than malic. Aci-gel also uses an acid. One thing with the gel is that it Is easier to control the amount. I like the ease of the ovules, however, with a very dumbed down list of ingredients... less chance of an allergic reaction.

  • corky60
    corky60 Member Posts: 453
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    Has this happened to anyone else?  On Jan. 26 I went to the walk-in clinic with UTI symptoms but the lab test was negative so I wasn't treated.  No culture.  Four days later I saw my family dr. and the lab test was positive. No culture.  I was treated with 7 days of cephalexin.  Then 9 days after that treatment ended I came down with horrible symptoms.  The walk-in clinic is now treating me with 10 days of Cipro since the lab test was positive.  And they will do a culture.  

    Were these two separate UTIs?  I am thinking that the January UTI just went subclinical and then came back in full force 9 days after finishing cephalexin.  I am seeing my family dr. on Tuesday and want to discuss this with her.Sad

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Corky, I've had a policy for the last 10 years or so that I won't take antibiotics without a positive culture. Then the December mess happened. Constant UTI symptoms with several negative cultures but got rid of symptoms with a course of Cipro. I never heard of "subclinical" but that sounds likely. For mine and for yours. I only deal with a urologist now for UTI stuff. He wants a positive culture and sensitivity data to make sure we are using the right antibiotic. His NP is more "liberal." She is the one who finally gave me the Cipro. I also started getting more conscientious with vaginal moisturizing at the same time. I really don't know what got rid of the symptoms but I suspect it was the Cipro. I would worry in your case that your resistance to Ceph might be building up. If the culture is positive, they should run sensitivity at that time. Then, at least you know what you are taking will work. I've found several articles that report studies where cultures were negative but infections were present. I wish I understood what was going on but I don't. Sorry this is so disjointed but this topic makes me crazy although I am being very successful right now using vaginal moisturizers every night. Just got a new one called Ladybits Jelly. Haven't tried it yet. Tell this family doctor that if the dip stick test is positive, a culture is required.

  • dtad
    dtad Member Posts: 771
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    Hi everyone...just want to add that UTI symptoms without infection could be interstitial cystitis. Its an awful feeling either way

  • Lula73
    Lula73 Member Posts: 705
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    corky- yes it can be a separate infection or it can be that the cephalecin didn’t eradicate the bacteria fully. Usually they go to Bactrim (broader spectrum antibiotic) if the infection comes back so soon...

    If you don’t have contraindications to taking them, Uricalm with Mannose-D and Cystex (to help with frequency & burning) were life savers for me when the same scenario happened over Christmas holidays. I took those 2 with that 2nd antibiotic. I always have the Cystex on hand. But this was the 1st time I used the Uricalm. I took the Uricalm for a full month.

  • corky60
    corky60 Member Posts: 453
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    Lula, thanks, I will investigate the products you mentioned.  But no Bactrim for me due to allergy.  My mother had the same thing.

  • corky60
    corky60 Member Posts: 453
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    From klebsiella-pneumoniae.org: (a poor translation but still understandable)

    "Some patients with a urinary tract infection treated successfully with antibiotics suffer, soon after recovery, the same infection again. So kill the antibiotics used reliably even really all bacteria?

    If some patients suffer periodically after an initially successful treatment relapses, then it is often the same pathogens responsible, who had already caused the first infection. One reason could be that the pathogen can penetrate into the mucosal cells of the urinary bladder or in certain cells of the kidney.

    Inside the cells, the bacteria are then relatively well protected from the immune system, but also from the effects of many antibiotics: is used to treat an antibiotic that destroys only the bacteria outside of the mucosal cells, then survive all the bacteria in the cells . stop After stopping the antibiotics, the survivors left their hiding place and again cause an acute urinary tract infection. 

    More: http://klebsiella-pneumoniae.org/treatment.html

  • HoneyBeaw
    HoneyBeaw Member Posts: 150
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    Corky

    I have a terrible time with UTI and several times I will get one which is treated with antibotics only to have it come back as soon as meds are finished . I think a lot the problem is these drs are pushing cheaper generic drugs that just do not kill it totally. The last few times I have gotten one I have been very aggressive with making sure I get the right meds and have not had it come back on me as soon as I finish the meds

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Corky, how is it going? Is klebsiella-pneumoniae the bacteria that showed up on your culture? I had that one once and got rid of it with an antibiotic called Linezolid. It was super expensive but my gyn jumped through some hoops and got my insurance to cover it at a higher level. I only paid $3.95. It was hard on GI issues but it worked. Hope you are doing ok.