Aromatase Inhibitors and Urethra Problems
Breast cancer diagnosed Nov 2008 (I was on HRT - stupid doctor (and stupid me) , lumpectomy, no node involvement, chemo T & C, radiation, ER/PR+, HER2-
I have been on Aromasin for two years (started on Arimidex but found foot pain unbearable). Besides some joint pain (my knees sound like crunching rice crispies) , the major complaint I have is dryness, pretty much everywhere, but especially vaginal and urethral. Sex is out of the question. I have tried replens, KY, Astroglide, all no good, and have only felt some relief from PrePair (got it on drugstore.com). As far as the urethra, I feel irritation and when I have to go, I have to go. I am so uncomfortable. I had a MRI of the urethra and the urogynecologist said something is going on, but not sure what yet. No tumors or masses, thank goodness. Having a cystoscopy tomorrow. I have seen older posts describing this problem, but not much anywhere else on the internet. Anyone have any info or advice? Thank you
Comments
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Vaginal dryness and atrophy is a s/e of AIs. My onc is very responsive to QOL issues, and even though I am ER/PR+, I have been using an estring for over a year. It's made a world of difference! It's not without risk and controversy because it does place some estrogen into the body, but there have been some studies that seemed to indicate that when it's first used, more estrogen gets into the body, but after several weeks when the vaginal tissues "plump up" very little is absorbed into the system beyond the vagina. After discussion with my onc, I decided to accept that calculated risk based on the large QOL issues I was having. Other women have not felt comfortable accepting that risk, and unfortunately there have not been a lot of studies done on this issue, at least not when I was researching this a year or so ago.
I didn't have URIs but like you I did have some urethral irritation, and once I got on the estring that hasn't been an issue at all.
You may want to discuss the risk/benefits of vaginal estrogen like an estring with your onc. Good luck - your problem is extremely common - it's just that people and doctors are uncomfortable discussion such personal issues, and I think it's very underreported. We all think we're the only ones, and we are not by far!
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Thanks so much NatsFan. I haven't had a UTI - only irritation. But I am very afraid of estrogen since I am sure I got BC from HRT. Although, this is very annoying. I will discuss with my Onc.
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drink tons and tons of cranberry juice and water for the urethra irritation
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Thank you Ruthbru - I will try that. Found out today I have a vaginal cyst that is pushing on my urethra - it has to come out. This might be causing the irritation. I still think the aromasin is drying me out, but I will have to live with it.
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Have you tried using 100% virgin coconut oil? I use it religiously every day, morning and night. You can buy it a health food store, in the jar it is solid, but when you put it on your finger it becomes softer. I wear a pantyliner because it can leak a bit, depending on how much you put in. I had a "cysto" as well - nothing. I think it's just the AI atrophy (Femara) for me, chemo also causes this, so it's a double whammy.
My onc. is totally against me using any kind of vaginal estrogen, mainly because I was 90% ER+. Using the coconut oil has been a big help for me, but you have to be diligent and use it all the time.
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Youch, a cyst would explain the irritation part of the problem!
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Ouch, a cyst. I'm sure you'll feel better when that is removed.
I am with Caya - I swear by the 100% virgin coconut oil - use the Whole Food "generic" 365 brand. I've tried about everything else - and morning & night - this has been the best. I too wear a "paty liner" every day - but it's ore than worth it, to have the relief from that awful drying.
I also now use the coconut oil as my night cream on my face! Fantastic- really as made such a difference.
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Ok, here is my experience..after I had been on arimidex a while I had the same problem
my GYN said I had a urethral caruncle from lack of estogen..you can look it up...
at any rate the irration and dryness was bad..so she said I needed a little bit of
topical estrogen..I told her about the arimidex and she got together with my onc, my
dermatologist and a urologist and explained the problem..they all agreed that I should
use a tiny dab of premarin on tissue and put it directly on it twice a week. It did work
and I used only a teeny tiny bit. after it was better I used it once a week for a while then
nothing..now I use it if I get symptoms . I only used less than half a tube in five years..
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Thank you ladies. The urogynocologist said cyst had nothing to do with aromasin - but I'm not convinced. He said topical estrogen was about the only thing that would help the vaginal (and I guess urethral?) dryness. I will ask my onc about premarin and coconut oil at my appointment next week. Hopefully removing the cyst will make me more comfortable. I am so sick of these medical problems!!! But so glad to have this forum to discuss and learn.
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'Slippery Stuff' (can be found on amazon)
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Actually, the urogynocologist said a bath would help. I will try it tonight. Also, tried all lubricants - haven't seen "slippery stuff", but found "pre pair" helpful (on drugstore.com)
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For the third time in 18mos on the aromatase inhibitor aromasin, I have symptoms exemplified by urethral syndrome. The first 2 times I went to the doc where I had a UA with lots of white blood cells (indicating inflammation), but no bacteria. Essentially the low estrogen causes thinning of the urethral lining (as well as the vaginal mucosa) and this causes the urethra susceptibility to inflammation as a result of a soapy shower/bath, sex, tight pants, sitting down for long time, etc.
For this 3rd case, I immediately took Uristat (a fantastic OTC treatment for the pain caused by UTI), 600mg ibuprofen 2X/day, and estrogen cream applied directly to urethral opening. Three weeks later, I'm taking 200 mg ibuprofen at night and am still applying estrogen cream 3X/week. I'm MUCH better and should be able to go off all drugs soon.
I'd be interested to learn what others who have this condition do for treatment.
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AZO makes a cranberry extract pill that I take every night. I used Huggies gentle care wet wipes after regular toilet paper to keep the area super clean.
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This is very helpful info, ladies. I take Arimidex. I suffer too from vaginal dryness. And now urethra irritation.
I was using Replens, daily and then Astroglide for sex. But now these both sting like crap. And the last time I used Astroglide it felt like a hot poker. I took a bath right away, but afterwards when I went pee and wiped myself, there was bright red blood. This freaked me out. And then very sore and throbbing for a few days. It has calmed way down now, but anything I put on it stings.
Coconut oil, the solid type I have. I will try. I went to a Naturopath and she is suggesting estrone cream which is the type of estrogen that rises in pregnancy and she says is protective against breast cancer. She says you can put it on your vaginal area and it stays local too.
On goes the battle.......
wallan
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I found this thread by accident. I am in my upper 60’s and never had a UTI until after I had a recent cystoscopy. I have had three cystoscopies in the past year due to a possible growth in my bladder. I took the antibiotics but still feel sore. I have small, unseen amounts of blood in my urine all the time (hematuria). I have been on Letrozole for almost 6 months. I have a lot of urethral pain/discomfort now that I didn’t have before I was on the AI but I never made the connection.
Thank you for reviving this thread!
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I use Vit E capsules which I insert into vagina, sometimes coconut oil (but this can get messy) I also use E45 cream on the outer edges of vaginal opening and around inner lips to moisturize the area (do not insert E45 into the vagina). This has made a huge difference in comfort levels. I am no longer as dry and no burning. I Never use soap on my genitals. Soap pubic hair area only. Let water wash genital area, no soap. I have found this routine extremely helpful.
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