Anastrozole and bladder pain

Posted by virginiae @virginiae, Feb 28, 2020

I have been on Anastrozole for 3 years and bladder pain has become my top issue. Feels like a UTI, but when I have my PCP test my urine there is no UTI. Went to a urogyn who said this is a result of the tissues thinning from lack of estrogen. With approval from my oncologist and urogyn, I use a small amount of estrogen cream vaginally 2x week, and the urogyn prescribed another medicine for pain flareups. I've been able to get by this way for a time, but it's been getting worse and harder to control the flareups. Next week I'm going back to the urogyn so she can look inside my bladder and make sure there's no cancer. Assuming there isn't (fingers crossed), if I cannot control the pain it's going to be a deal breaker for me and I will stop the anastrozole. I have been managing through the joint pain and other side effects, but it's very hard to function with bladder pain and I have to be able to support myself for a little longer. Anyone else struggling with this? Thanks...

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Profile picture for gshoemaker @gshoemaker

Did your interstitial cystitis cause symptoms like blood showing up in urine, which caused you to think you had a UTI? What sent you to the urologist for a cystoscopy?

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Pain. Painful bladder on a regular basis. No blood in urine, just the pain similar to when you have a UTI. Cystoscopy found no signs of cancer but a lot of inflammation. I managed through this period by drinking a ton of water and avoiding acidic foods and it did get better, but would flare up periodically. I finished my 5 years of anastrozole and I do think that exacerbated it.

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So, can you tell me how often and at what time of day you have bladder pain? I have burning pain lower abdomen at night, keeps me awake but rarely have it during the day.

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Profile picture for karenvh @karenvh

So, can you tell me how often and at what time of day you have bladder pain? I have burning pain lower abdomen at night, keeps me awake but rarely have it during the day.

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@karenvh, have you talked to your cancer team about this bladder pain? Have they ruled out any infection or other condition that may be causing this pain?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@karenvh, have you talked to your cancer team about this bladder pain? Have they ruled out any infection or other condition that may be causing this pain?

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No I have not spoken with onco, but my doctor is running tests, high Leukocytes and hemoglobin in urine, having an ultrasound on Tuesday, but I quit taking the anastrozole last week Monday and I'm already starting to feel better. I'm going to stay off it until all tests are done. Then make a decision as to go back on it or change to something else. Thank you for your response, I appreciate it.

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Profile picture for elizm @elizm

@virginiae
Such an interesting question. I have an estrogen-related issue which may or may not be in the same boat, but may further enlighten the discussion.

Six years ago, as a clearly postmenopausal woman, I began having horrendous UTIs each month (something my mother and older sister also were plagued with). My PCP would give me antibiotics to which I would have strong adverse effects, and sent me to a urologist who said my bladder and kidneys were in great shape. After several months of the UTIs, I went to a gyno-oncologist on another issue and mentioned the UTIs. He said the solution to that was easy and prescribed 10 mcg. vaginal estradiol tablets twice a week (a tiny, tiny amount)... and the UTIs stopped. I haven't had one since. (I had no idea there was a connection, and apparently, neither did my PCP nor the urologist.)

When menopause occurs, estrogen production is reduced, which is the major cause of urogenital atrophy. Atrophy means a wasting away of muscle mass, and urogenital atrophy involves atrophy of the vagina as well as atrophy of the urinary tract. Potential issues include UTIs, stress and urge incontinence, pelvic organ prolapse, vaginal bleeding, etc. There are various lifestyle changes (like reducing caffeine, specific exercises, maintaining a healthy weight, etc.) and medical procedures which can address these. Topical estradiol also is one.

As you likely know, anastrozole is a double-whammy for postmenopausal women... our ovaries are no longer making estrogen, and now the anastrozole is blocking the estrogen from our fat cells and adrenals.

At one time, it was thought that topical vaginal estradiol was contraindicated for HR+ breast cancer patients, as systemic estradiol (HRT) certainly is. More recently, however, studies indicate that postmenopausal breast cancer women who use vaginal estrogen have the same risks (for invasive breast cancer, stroke, blood clots, endometrial cancer, and colorectal cancer) as women who do not use vaginal estrogen.
https://www.breastcancer.org/research-news/vaginal-estrogen-not-linked-to-high-risk
https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Gynecologic-Practice/The-Use-of-Vaginal-Estrogen-in-Women-With-a-History-of-Estrogen-Dependent-Breast-Cancer
https://www.medpagetoday.com/obgyn/breastcancer/56449
The controversy now is whether the tiny amounts of estradiol (10 mcg taken twice a week = 20 mcg.) which breast cancer survivors use for urogenital issues is enough to interfere with the work of anastrozole (1 mg. = 1,000 mcg. taken daily = 7,000 mcg) as to make it substantially less efficacious. The use of estradiol therefore becomes an informed decision as the experts have not come to a conclusion.

Here's hoping that your uro-gyn can assess what's going on with your bladder (due to a prolapsed uterus, for example) and that s/he can provide the relief you need and deserve.

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This is helpful info! I have been on anastrozole for 3 years and have had 5 UTIs in just under 2 years. I'm going to ask my onco doc about estradiol.

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Profile picture for sparklegram @sparklegram

I agree with Trixie, @virginiae. I think a conversation with your doctor about switching AIs immediately is in order. Exemestane might be a good choice

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My oncologist said switching AIs would not because they all cause it. However, what do you have to lose by trying a different one for a while?

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I am 65 and have been on Anastrozole for 3 1/2 years. Four months ago I had minor vaginal bleeding. After a endometrial biopsy six weeks ago I developed cramping that never went away. I had a D& C and the pain is still there; some days are better than others. My GYN suspects the Anastrozole for my pain. Anyone else have general pelvic cramping symptoms? A two month med vacation sounds like a good idea.

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I had similar problems on Anastrozole and things completely fell apart at about the 18 to 20 month timeframe. I had so much body inflammation that I was in so much pain. I also had bladder spasms, UTIs, worsening dry eye, and I now have lichen sclerosis throughout my body. My doctor changed my prescription to Extemestane with less side effects. I have to take this medication after a meal and it does seem to make me run hot, overheating, easily, not hot flashes though. I’ve used compounded Estriol for many years. I also use the AZO Bladder control supplement. It is a pumpkin seed supplement that is supposed to reduce inflammation and relax the bladder. It has reduced the urgency greatly.I am on Medicare and it had a zero co-pay for Anastrozole, but I do now have a co-pay for Exemestane but not too much for 3 months supply. Everybody’s journey is different, good luck with yours!

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Profile picture for elizm @elizm

@virginiae
Such an interesting question. I have an estrogen-related issue which may or may not be in the same boat, but may further enlighten the discussion.

Six years ago, as a clearly postmenopausal woman, I began having horrendous UTIs each month (something my mother and older sister also were plagued with). My PCP would give me antibiotics to which I would have strong adverse effects, and sent me to a urologist who said my bladder and kidneys were in great shape. After several months of the UTIs, I went to a gyno-oncologist on another issue and mentioned the UTIs. He said the solution to that was easy and prescribed 10 mcg. vaginal estradiol tablets twice a week (a tiny, tiny amount)... and the UTIs stopped. I haven't had one since. (I had no idea there was a connection, and apparently, neither did my PCP nor the urologist.)

When menopause occurs, estrogen production is reduced, which is the major cause of urogenital atrophy. Atrophy means a wasting away of muscle mass, and urogenital atrophy involves atrophy of the vagina as well as atrophy of the urinary tract. Potential issues include UTIs, stress and urge incontinence, pelvic organ prolapse, vaginal bleeding, etc. There are various lifestyle changes (like reducing caffeine, specific exercises, maintaining a healthy weight, etc.) and medical procedures which can address these. Topical estradiol also is one.

As you likely know, anastrozole is a double-whammy for postmenopausal women... our ovaries are no longer making estrogen, and now the anastrozole is blocking the estrogen from our fat cells and adrenals.

At one time, it was thought that topical vaginal estradiol was contraindicated for HR+ breast cancer patients, as systemic estradiol (HRT) certainly is. More recently, however, studies indicate that postmenopausal breast cancer women who use vaginal estrogen have the same risks (for invasive breast cancer, stroke, blood clots, endometrial cancer, and colorectal cancer) as women who do not use vaginal estrogen.
https://www.breastcancer.org/research-news/vaginal-estrogen-not-linked-to-high-risk
https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Gynecologic-Practice/The-Use-of-Vaginal-Estrogen-in-Women-With-a-History-of-Estrogen-Dependent-Breast-Cancer
https://www.medpagetoday.com/obgyn/breastcancer/56449
The controversy now is whether the tiny amounts of estradiol (10 mcg taken twice a week = 20 mcg.) which breast cancer survivors use for urogenital issues is enough to interfere with the work of anastrozole (1 mg. = 1,000 mcg. taken daily = 7,000 mcg) as to make it substantially less efficacious. The use of estradiol therefore becomes an informed decision as the experts have not come to a conclusion.

Here's hoping that your uro-gyn can assess what's going on with your bladder (due to a prolapsed uterus, for example) and that s/he can provide the relief you need and deserve.

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virginiae @virginia It feels like a hug to read an email about the bladder issues related to estrogen and breast cancer! I totally understand everything you discussed. I will add this: The minute I started taking anastrozole for breast cancer, here came the vaginal and urogenital issues. As for the vaginal: I used Replens. It was not expensive, had zero estrogen, and worked very well for me. I have been on anastrozole for 2 1/2 years. Then for the UTIs, that's a whole 'nother issue. I have had many, many UTIs, almost one right after another, then a couple of months without, etc. I was with the same Urologist the entire time, and he NEVER solved the problem, and it made me angrier every month. Your post helps tremendously! You are not alone!
Just about 10 days ago, I had surgery for breast cancer. The cancer (4) had been invisible for about 6 months. The excellent surgeon I had said there is absolutely no cancer, We had planned 2 lumpectomies for the 4 locations of cancer. The path report says there is no residual carcinoma identified, and calls it AJCC Pathologic stage of ypTO, meaning that no residual tumor is found after therapy and surgery. You can't even tell by looking that I had surgery on the breast. Surgeon did such a beautiful job collecting tissue and removing clips and stitching me up, you can't even tell I ever had surgery. Such beautiful work, but I'm really sore.
So i have been off anastrozole for that 10 days. I await the onc's instructions about either starting it back up or not. My bones, sleep, vaginal issues, bladder, etc all feel so much better that I dread having to start it up again. As I understand, most docs want you to take it for 5 years, so I will probably be asked to do at least another year and up to an additional 2 1/2 years. I don't know what I will agree to. We're all so different ,really...being post menopausal, can I use that tiny amount of estrogen to help me out or no? We're addressing the bone density and a few other issues, but the side effects are so very ugly mostly.
I guess I just want people to know that the suffering through the side effects of anastrozole for 2 1/2 years paid off, big time, for me. But there are some things that need to be addressed, and just like now..I read where someone else has the UTI problems, so I am not alone and there seems to be a fix for that!
If anyone has anything else to offer, I'm all ears! I'm just so happy to be rid of that cancer for the moment and hopefully forever...I wish everyone the best, and I'm sorry any of us have to go through this! Hugs!

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Profile picture for eleanorrigby @eleanorrigby

virginiae @virginia It feels like a hug to read an email about the bladder issues related to estrogen and breast cancer! I totally understand everything you discussed. I will add this: The minute I started taking anastrozole for breast cancer, here came the vaginal and urogenital issues. As for the vaginal: I used Replens. It was not expensive, had zero estrogen, and worked very well for me. I have been on anastrozole for 2 1/2 years. Then for the UTIs, that's a whole 'nother issue. I have had many, many UTIs, almost one right after another, then a couple of months without, etc. I was with the same Urologist the entire time, and he NEVER solved the problem, and it made me angrier every month. Your post helps tremendously! You are not alone!
Just about 10 days ago, I had surgery for breast cancer. The cancer (4) had been invisible for about 6 months. The excellent surgeon I had said there is absolutely no cancer, We had planned 2 lumpectomies for the 4 locations of cancer. The path report says there is no residual carcinoma identified, and calls it AJCC Pathologic stage of ypTO, meaning that no residual tumor is found after therapy and surgery. You can't even tell by looking that I had surgery on the breast. Surgeon did such a beautiful job collecting tissue and removing clips and stitching me up, you can't even tell I ever had surgery. Such beautiful work, but I'm really sore.
So i have been off anastrozole for that 10 days. I await the onc's instructions about either starting it back up or not. My bones, sleep, vaginal issues, bladder, etc all feel so much better that I dread having to start it up again. As I understand, most docs want you to take it for 5 years, so I will probably be asked to do at least another year and up to an additional 2 1/2 years. I don't know what I will agree to. We're all so different ,really...being post menopausal, can I use that tiny amount of estrogen to help me out or no? We're addressing the bone density and a few other issues, but the side effects are so very ugly mostly.
I guess I just want people to know that the suffering through the side effects of anastrozole for 2 1/2 years paid off, big time, for me. But there are some things that need to be addressed, and just like now..I read where someone else has the UTI problems, so I am not alone and there seems to be a fix for that!
If anyone has anything else to offer, I'm all ears! I'm just so happy to be rid of that cancer for the moment and hopefully forever...I wish everyone the best, and I'm sorry any of us have to go through this! Hugs!

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@eleanorrigby, and my dear comrades of fighting the disease of BC:

Thank you so much for sharing your experiences with us! I am so happy and grateful to know that there's no more residual tumor has been found in your body after your 2.5 years of taking Anastrozole therapy, Eleanor:) Congratulations for your successful surgery and effective treatment! This is so wonderful to hear:) Thank you!

As for the UTI & bladder issues, my 2 cents is taking the (Cranberry + Vitamine C) supplement whenever I feel a little discomfort with my urogenital system, and it does the trick all the time for me:). Back in October of 2023 when we were traveling in Hawaii, my husband suddenly got infected with an acute UTI for unknown reasons; after taking a full doses of antibiotic but the discomfort and minor symptoms of infection remained, so I gave him my go-to remedy: the pill of (Cranberry + Vitamine C) supplement daily for 2 more weeks and he never has that issues again. For as far as I know, Cranberry has its natural antibiotic that helps us fight bacterial infections.

Wishing you all smooth sailing ahead!

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