Fear and UTIs
First I want to warn all my readers that this article is going to talk about female stuff. It is going to talk about urinary tract infections (UTIs) and other things related to female body parts. If you don’t want to read it – turn your gaze now …
One of the stupid side effects of aromatase inhibitors (AIs) is an increase chance of UTIs. These are horribly painful and require a course of antibiotics to resolve (and yet one more set of doctors appointments). Since starting on AIs in January, I’ve already had two UTIs. At first I thought I was tolerating the AIs well. Now, I get regular external vaginal pain – it is like my vagina is on fire. It sucks.
So I talked to my gyn – she is amazing – she recommended an estrogen cream applied externally. It has been shown that it does not get into the blood stream. To help make me feel more comfortable with it, I could do regular monitoring of my hormone levels. I actually already do regular monitoring of hormone levels – as the tests are needed to ensure that the Lupron (injected every three months to prevent my ovaries from producing estrogen) is working. I also need to do regular blood work to ensure my calcium levels are sufficient for my once every six month Prolia (denosumab) shot.
However, the entire idea of this estrogen cream has me scared to death. The whole idea of putting estrogen on my body scares the crap out of me. I’ve check with my onc, and he is OK with it. He said it is quite a common treatment for frequent UTIs caused by AIs. It is local not systemic. It likely would make me feel a whole lot better (burning when you pee is REALLY uncomfortable – and sometimes it is burning even when not peeing – so general unhappiness caused by severe drying that happens when your body has no estrogen in it).
In many ways the fear is pure emotion. There is no logic to it. All evidence says it is safe. But the fear is visceral. It is deeper than any other fear. I do wonder if it is more a sense of PTSD than it is about fear of using the cream. It is more that the idea of having to use it is a reminder of all the cancer crap. It is just one more layer of crap.
The only reason I’m considering it (filled prescription but still haven’t the nerve to try it – the instructions on the prescription don’t align with what my gyn said in her office, so I’m awaiting more detailed instructions) is because of the promise of normalcy that it brings. I want to feel comfortable. I want to be able to ride my bike without adding that little bit of pain to the equation (I already have upper body issues when biking). And I really don’t want to go through yet another UTI and round of antibiotics. But even writing this out I’m crying. The fear is overwhelming. Maybe I’m just not ready for this yet …
- Becky
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I was on letrozole, and AI, for over a year and a half to try to manage my endometriosis. Thankfully, I didn’t get any UTIs while on the letrozole. I am sorry you are getting them frequently, UTIs are horrid 🙁
I am sorry and deeply empathize with your struggle of having to do something that reminds you of what your body has been through-what it has put you through, what you are still going through…
As I need to remind myself constantly: “You can do this. You are strong and you can do this. You have never not managed before, you will continue to manage now.” And some days I can’t manage forcing myself to do certain things. On those days, I take a deep breath and resign to try again tomorrow, or even later in the day. I take things moment by moment to try to not put the pressure on myself- I try to keep a “It’s okay if I can’t do this right now.” mindset.
I hope you find some peace, and pain relief, with whatever decision you make. <3
Thanks for your comment – knowing that others understand the struggle helps – writing about it helps. It is amazing actually how writing the difficult post helps to move past the difficult moment.
Becky, Thank you for writing your post, it really helped me when I read it. I felt like the only one with this problem until now.
Rene
Becky, I understand exactly what you’re going through. I have been on an AI for two years now. I already was prone to UTI’s and since January I have had one after the other. Basically been on antibiotics for three months. I finally went to a gynecologist as my primary doctor wasn’t helping and she put me on the estrogen cream. I have only been on it for a month now and she said it takes three months to improve the dryness and help reduce the incidence of uti’s. I did check with my oncologist to make sure he was ok with me using the estrogen cream and he was which was a relief for me. Good luck, I hope it works for you and myself as well!. It is a horrible problem! I am exhausted from the past three months of being sick.
Thanks you Rene for your reply. It really helped me move past the fear. It is interesting to me how both blogging and hearing the support of others helps deal with the worst of the fear. I seem to have gotten past it – no longer brought to tears at the thought of it. Not sure what my next ‘trigger’ will be – but it seems that this one has exhausted itself for now. I gave it a try last night, and already seem to have a little relief.