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Recurrent Infections

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2

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  • threetree
    threetree Member Posts: 1,263
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    cm2020 - Please let us know how the Restore goes. I ordered some too, but am scared to try it now when it comes, as I've since read many reviews on Amazon in which there are big complaints about how badly it stings; some call it burning. Many said the sting/burn did not go away and that they were in extreme pain all day every day until they just quit using it. Others seemed to swear by it.

  • cm2020
    cm2020 Member Posts: 530
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    ThreeTree......I just used it out the outside and it was fine and actually it felt really good (shows just how dry I am...it felt as good as applying lotion to super dry hands). I had a couple of Replens left from when I actually had sex, so I am using those up first. I ordered the Bionourish from Good Clean Love and that is what I plan to use inside, once it comes. Whenever I use either of those inside, I will post about how it is. I wonder (total guess) if the burning is because the lining of the vagina is just so very dry and fragile? Again, like applying lotion to super dry chapped hands sometimes burns when first applied. Regardless, I shall report back as soon as I use it.

  • threetree
    threetree Member Posts: 1,263
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    cm2020 - Thanks, and I also meant to tell you how very sorry I am about what your day at the doctor's was like. What a big mess! I hope the Bactrim helps real soon. I haven't had any experiences with it in ages, but I remember it as a pretty good drug. Here's hoping some of that kitchen sink stuff does stick and you don't need to go to a urologist or keep taking antibiotics.

  • ubershop7
    ubershop7 Member Posts: 32
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    When I had 6 utis in a row, the er doctor said I should see a urologist, too. I happened to have an appt with my gyn the following week, and she suggested some estrogen suppositories. I didn't want to do that. So she said to try Replens. I had done some Dr Googling, too, and read that the dryness from menapause and AI's contribute to utis. The lack of estrogen can cause atrophy, thinning, etc. Made sense to me. The Replens burned the first week I used it. I used to put the Replense tube in a zip-loc in the refridgerator (tmi, I know), and that helped. I wanted something that didn't have so many chemicals in it, especially parabens. Googled again and found the Good Clean Love. It didn't burn because I had been using the Replens a few months at that point. They need to change the applicator, though, into something more rounded. Ouch! Btw since you have been on a course of antibiotics, try a good probiitic, too. All the antibiotics can kill the bad and the good bacteria:)

    cm2020 and Three Tree Hope it does wonders for you:)

  • cm2020
    cm2020 Member Posts: 530
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    Okay, I am back to report on Restore and I have another question. I have used it twice (the Bionourish is supposed to be delivered today and I will report on it once I use it). It does burn a little but isn't painful, just uncomfortable for a few minutes. I found it burned less the second time I used it. The applicator does need improving...why in the world don't they make it round and more "insertion friendly"!

    Here is my question...after using the vaginal lubricants (esp the Restore), I am having some spotting when I wipe. Has this happened to those of you that have used lubricants? I do have my physical late next week and will tell my dr (who I am sure will take action and do a pap and internal exam) but just wanted to hear if it has happened to any of you. I am a little freaked out given I have been in menopause for over a year.

  • cm2020
    cm2020 Member Posts: 530
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    Threetree and ubershop7, thank you very much.

  • threetree
    threetree Member Posts: 1,263
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    cm2020 - You're quite welcome. My order is supposed to arrive any day now, but not sure I'm going to try it, due to all of the bad stinging comments I've read, especially on Amazon. It does seem to vary from person to person, but right now I think I'm too scared, and I'm not in that bad of shape, so I might hold off and just keep it in reserve.

  • purplecat
    purplecat Member Posts: 226
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    Reading through this thread with great interest. I'm at the end of my wits with UTI symptoms that came back after a round of antibiotics 2 weeks ago. Since then, two cultures on two different days have come back negative for everything except "resident flora." I was really freaked out to see obvious blood on the toilet paper two days ago. I'm currently waiting for a call back from my new PCP's office to confirm the second negative culture and discuss what to do next. She had said a CAT scan to check for stones and then a cytoscopy if symptoms persisted. So of course my mind goes immediately to bladder cancer.

    Is it really true that low estrogen could be causing all these symptoms? That would make sense, as I ran out of my cream a couple of weeks ago. Definitely want to refill it, but want to try the "bead" form instead so was waiting for my next appointment with the speciality gynecologist who prescribed it. After a lot of rescheduling for various reasons, it's finally happening on Monday, and I'm counting the hours!

  • armom4
    armom4 Member Posts: 82
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    Hi purplecat! I don't know if you saw my earlier post about Interstitial Cystitis. I had the same symptoms. Blood on the toilet paper, UTI symptoms, and negative cultures. Look it up and ask your doctor if it could be Interstitial Cystitis.

  • cm2020
    cm2020 Member Posts: 530
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    Purplecat that is SO frustrating! UTI symptoms are just awful and make you feel like hell all over. To have the cultures come up negative is scary and concerning. I agree with ARmom4, please check into the possibility of Interstitial Cystitis. I hope you get answers, and relief, very soon.

  • cm2020
    cm2020 Member Posts: 530
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    For those of you that use some kind of vaginal moisturizer to help keep UTIs away, how often do you use it? Also, I have found that Good Clean Love BioNourish does not burn like the Restore does. However, that applicator is a real problem. Without fail I spot after using it for at least an hour (it was longer but I stopped using it daily and the spotting stopped). It is also painful to insert. It really stinks that the company didn't improve on that design. I am considering going back to Replens because it doesn't burn, feels better, and the applicator is very gentle. Plus I really like the one time use of the applicator and the fact it is prefilled. Seems like less chance of introducing bacteria.

    I finished my second round of antibiotics for my most recent UTI yesterday. In addition to the vaginal moisturizer, I have started D-Mannose and drink corn silk tea daily (it IS good! very mild and easy to drink). Here's hoping all of this works.

  • moth
    moth Member Posts: 3,293
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    I just want to say that if your goal is preventing UTI's (as opposed to sexual comfort, preventing vaginitis), it's probably not necessary to insert the moisturizer into the vagina. What you need is a lot of external moisture in the area of the urethra and labia minora.

    Also, not sure if it's been mentioned in this thread:

    -use a bidet or peribottle instead of toilet paper. Peri bottles are available online on amazon. They're sold for post partum but work well for anyone. pat dry with a cloth after. You want to avoid rubbing the skin because it's fragile and thin and rubbing paper on it can cause little tears and abrasions.

    -if you're using liners because of leaks, change them frequently, try changing brands or using a fabric one at home.

    -always, always, always get up to go pee after sex. Always. No matter how tired. Pee and use your peribottle.

    -if receiving oral sex, make sure your partner's dental health is good & have them brush their teeth or use a dam. Mouths have a ton of bacteria & if someone has an infected tooth or gum, it will be even worse.

    soaking in bathtubs, hot tubs can also increase your risk of UTI so make sure they're super clean & properly maintained or avoid.


  • cm2020
    cm2020 Member Posts: 530
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    moth...GREAT advice!!! Thank you so much. I will definitely be buying a peri bottle (I didn't realize the general public could buy them these days..thank you for letting us know).

  • saltmarsh
    saltmarsh Member Posts: 192
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    To PurpleCat, and anyone else wondering if your symptoms might be pointing to Interstitial Cystitis, some of the "tell-tale" signs it might be IC instead of UTI are if you keep being diagnosed with a UTI or thinking you have a UTI but the test comes back negative, and that if you do the things people often do for UTIs -- like drink cranberry juice or take AZO -- your symptoms worsen. I used to suffer quite badly from IC, but after I followed up on my hunch that my doctor's office was wrong, and these were not UTIs I was having, and I saw an actual urologist, things got much better.

  • cm2020
    cm2020 Member Posts: 530
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    saltmarsh...I didn't realize those telltale signs. I'm so glad you shared them, thank you. I'm glad you are doing better.

  • ceanna
    ceanna Member Posts: 3,120
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    I've been reading this thread with interest. I used to get frequent UTIs but not from chemo so I didn't chime in before. One thing I haven't seen discussed is food allergies which aggravate UTIs. I found my number one trigger was wheat and yeasty foods, which was worse after a round of antibiotics for the previous UTi. Once I kept a food diary and kept track of when the symptoms started, I tried eliminating my triggers and it seemed to really make a difference, and I haven't had a full blown UTI in years. Mine always started with an urgency to go, itching, and pain, and now when I feel the beginning of urgency, I back off from trigger foods and it goes away without testing and antibiotics. Just something to explore, since antibiotics and chemo mess with our bodies and elimination system. All the best to everyone!

  • murfy
    murfy Member Posts: 254
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    And with urethritis, my urinalysis always showed positive for blood in urine because of inflamed urethra and leakage of red and white blood cells. Ask your Doc about this because easier to deal with than IC.


  • ubershop7
    ubershop7 Member Posts: 32
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    I did have some spotting initially. The dryness from low estrogen causes that. My gyno told me I had minor atrophic changes. After that, I started with Restore daily after I shower. Replens lasts longer, maybe 3 days. The peri bottle is a fabulous idea!! I pour bottled water on myself down there. Going to buy that peri bottle, thank you:)

    Ugh yes the applicator for Restore is not too comfortable to use. I spray mine with rubbing alcohol and wash between uses.

  • cm2020
    cm2020 Member Posts: 530
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    ubershop7.....I do wash the applicator after every use, but didn't think about also using rubbing alcohol on it too, that is a good idea. Thank you for sharing your experience on spotting and using moisturizers I was thinking it was probably due to dryness, but is good to hear it confirmed.

  • threetree
    threetree Member Posts: 1,263
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    ubershop - How do you spray on rubbing alcohol? I wipe it on a lot of things, but never thought of spraying.

    cm2020 - I think I'm still scared now after reading these latest posts to try either the Restore or Replens. They are both sounding nasty now.

    moth - Never knew about a peri bottle for any purpose. Thanks for your post. I've been looking at them on Amazon. Are you supposed to wash them every time you use them?

  • cm2020
    cm2020 Member Posts: 530
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    ThreeTree..... I was wondering how she sprayed the alcohol too. My thinking was just get a spray top and screw it onto the bottle. You know, the BioNourish doesn't burn me, surprisingly, but still isn't "comforting". I have used Replens a lot in the past for sex and really do love it. I can feel it "soaking in and moisturizing" (like your hands do when you apply lotion) the second I apply it. I instantly feel more comfortable. I haven't experienced anything worrisome or bothersome with it at all. I used up the last few syringes I had last week and remembered how much I liked it. The Good Clean Love products (even the BioNourish) do not provide that same feeling. While I will eventually use all the GCL products I have (except the Restore), I decided this morning I am going back to Replens. I really do love it and think it works best for my needs (having nothing to do with sex...hubby and I are separated in theory but have to continue to live together due to finances and for me to keep my health insurance).

    These really are such individual decisions and I am so glad that we all contribute what works, what doesn't, and our experiences with them. It just helps so much and is reassuring as well.

    Edited for some clarity.

  • threetree
    threetree Member Posts: 1,263
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    cm2020 - I suppose you could buy a spray bottle and just pour a bottle of rubbing alcohol into it?

    Thanks for the additional info about the moisturizers, etc. My order came with both Replens and the Restore, but I'm not too bad right now, so will maybe put them on hold. Some of the Amazon reviews for Replens said it was awful and curdles like cottage cheese, etc. Of course there were those who said it was the best thing that ever happened to them, so yes, those individual differences really do come into play.

    I've been divorced for 16 or 17 years now, so I can understand some of your domestic issues. My husband moved out though and didn't want to pay for anything, so you are getting some benefit with him there I suppose.

  • cm2020
    cm2020 Member Posts: 530
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    Threetree....I will probably just pour some alcohol over it and let it dry. That is a very good idea too. I have never read the Amazon reviews for Replens. I have had no curdling problems (from the prefilled individual syringes), it stays in (I use it at night before bed). You know, I am grateful we have options for vaginal lubricants/moisturizers!

    Ugh, you went through a lot with your ex-huband. I hope you are happy and doing well now. Do you have kids? For me, it is hard having him still here, and this is not how I would choose to do it. Luckily he works a whole lot and when he isn't here my daughter and I are quite happy. I dread the holidays (which normally I love) because I just hate having to deal with him and be around him. But I have no options and I will find a way to make the best of it. Since he is not only giant ass, but a martyr as well, he is perfectly happy. You are right, at least I am getting some benefit and I don't take that for granted....but damn....I am paying such a high price for it.

  • ubershop7
    ubershop7 Member Posts: 32
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    Hi! I have granite countertops and have a spray bottle with 70% rubbing alcohol in it to spray the countertops to get rid of germs. Just an ordinary spray bottle. I use that spray bottle on the Restore applicator, wait about 30 seconds, then I rinse the alcohol off. Lol. I wash the applicator with soap and water first. Then I spray the applicator. Alcohol can degrade the applicator and make it brittle if you let it dry on the applicator. Sorry, I should have included more detail:) I am a bit of a germaphobe, can you tell?

  • threetree
    threetree Member Posts: 1,263
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    Thanks, ubershop7!

  • cm2020
    cm2020 Member Posts: 530
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    ubershop7....thank you!!! I'm a bit of a germaphobe too.

  • ubershop7
    ubershop7 Member Posts: 32
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    I am so glad I have people like myself to discuss things like this with. I really think the doctors should make this conversation a part of your treatment in the beginning. I mean, I was prescribed the AI's for 5 years and I had a BSO, too. I kept having the utis and burning feeling for so long. Had I know to start some V routine daily, and early on, it would have saved me alot of trouble. I could not be more estrogen deprived lol. I made that suggestion at my last follow up. I go for follow up every 6 months. My last appt is in Nov. After that, I will be on once a year follow up.

    Let's see if they listened....

    Btw...how often does everyone else go for follow up? I have a bone density scan, CA 125 (had aunt with ovarian cancer) and breast mri at 1st appt, then mammo at second. They are switching me once a year mammo with iv contrast after Nov. Not sure if the bone scans will continue. I had minimal bone loss from AI, but I run and take calcium and vitamin d daily, too.

    Do you know that most women diagnosed with breast cancer have low vitamin D levels? Mine was 25 at time of dx, which is low. Should be over or at 45. They told me 60 is ideal. Mine never goes above 45, even with the daily sun and vitamin D supplements. You can ask them to test your vitamin D during lab work. I do that once a year, toi. Just 15 minutes a day out in the sun with as much of you exposed as possible (arms and legs) can keep you at a healthy level.

  • cm2020
    cm2020 Member Posts: 530
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    I agree ubershop7! I don't know what I would do without the advice and camaraderie that I find here. It chaps my butt that this isn't brought up at our very first oncology appt when they are talking to us about hormone suppression. Like you, there is not a speck of estrogen to be found in my body. My Vit. D level was actually normal at diagnosis. I didn't realize that the majority of women were low at diagnosis. My MO does test Vit D every 6 months when she also does a cbc and cmp. She doesn't do tumor markers (and I agree and support this) because she finds they aren't very reliable and contribute to unnecessary stress/worry in patients. I know there are times she must do them, but I don't know under what circumstances she does.

    I see my MO every 6 months. I had a bone scan before I started Letrozole. It was normal and I have another one 2 years after the first. I had a mammogram 6 months after lumpectomy, then it will be every year...always diagnostic. I was discharged from my BS at my 6 month appt. I am supposed to have one more appt with my RO in Feb. (which will be roughly 1 3/4 years after the start of radiation), but I will probably cancel it if all is well because I don't see the need for it.

    The only MRI I had was prior to my lumpectomy. No one has mentioned me having another one and I pray it stays that way. I start getting anxious and crying even thinking of going through that again. Valium wasn't enough and I barely made it through due to my horrible claustrophobia. I honestly don't know how I would get through another one.

  • threetree
    threetree Member Posts: 1,263
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    ubershop7 and cm2020 - I totally agree that it is so nice to have others to discuss this stuff with! I was never even tested for vitamin D until last March - after I'd been on the Letrozole for a little over a year! I'm beginning to think it should almost be considered medical malpractice to not test D levels at the time of diagnosis (for me that would have been fall of 2018), because after being diagnosed, I've read so much about the connection between low D levels and breast cancer; it is a huge relationship. When mine was finally tested, I had already been taking the vitamin D I was prescribed when I started the AI over a year earlier and it registered as 37; not even the 45 ubershop7 noted. They said they were not concerned because it was in a normal range, but I'm assuming it had been low when I was diagnosed.

    I continue to take the D3 supplements, and I'm also a big fan of sardines (I can hear the groans and gagging from others), and also try to have some dairy every day. I also walk most days, but I live in an area where sun is not a big or frequent thing. I eat a lot of mushrooms too, and if they have been grown in UV light, they are supposed to be a fairly good source of vitamin D, but I can never find out if the ones I eat have been grown that way. It's never noted on any packaging and store clerks have no idea. Also, I read that as we age, we do not manufacture nearly as much D from the sun as we do when we are younger. I don't know how old both of you are, but I'm 68 and I read that people in their 70's I think (maybe those over 50? just can't remember the source/info exactly) only make 25% of the vitamin D from being out in the sun, that a person in their teens or twenties does. I was shocked to learn that our ability to manufacture it from being out in the sun drops so much over time!

  • cm2020
    cm2020 Member Posts: 530
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    ThreeTree......When my Vit D levels have been below 45 but above whatever the minimum is (can't remember now...30, maybe) they have said it was fine too. Most practitioners don't seem to have an understanding of exactly what it the optimal level for it to be, which is frustrating. I think my most recent level was 56. Like you, I have been supplementing for years. I take 4000ius daily. I am vegan so no sardines for me. I am almost 56.