Aromatase Inhibitors unlisted side effects

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I know this post can be put under so many headings...sorry if I picked the wrong one. I started Letrozole 6 weeks ago and this past week I started having new issues. I noticed when I was walking my vagina was hurting so I decided to start using coconut oil. I went to apply it and I freaked out, my labia was gone and my clitoris shrunk!! Do you know there is nothing listed anywhere about having these side effects? The drug companies get out of listing these because technically these are side effects of menopause and not the drug. Nowhere on this site or the Komen site lists genital atrophy. For some reason all this is left out. One of the articles I read today states that these symptoms go largely unreported because of embarrassment. I just don't understand that. Ladies we need to speak out!!

There is an article on the home page that is titled "ASCO Releases Guidelines on Ways to Treat Sexual Problems in People With Cancer" that states it is recommended that someone from the patient's healthcare team bring up the subject of sexual problems from the cancer or its treatment. That's a start. At what point are they going to discuss this? After it's too late?

I really want all the side effects of these drugs to be listed so we are not blind sided. This was really a blow to me and I cried for two days. How do we get all side effects of the drug (in my opinion) or in the menopause section on this site? How do we get doctors to tell us the whole truth? I did stop taking Letrozole and I will not continue until I do more research and see a gynecologist.

I am attaching some links to articles I found.

https://www.medscape.com/viewarticle/873761

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493485/

https://www.medscape.com/viewarticle/863764_3


Comments

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited March 2018

    Add urethral caruncle (collapsed urethral wall due to lack of estrogen - looks like a huge clot at opening of urethra) to the list. Only topical estrogen can fix this. Not going there, so sitz baths. Surgery is not recommended for me.

  • jaycee49
    jaycee49 Member Posts: 1,277
    edited March 2018

    Julia, that was a really good post. I have been thinking about it since you posted it. I found it when looking, yet again, for suggestions for vaginal atrophy and urogenital SE's. I have issues with UTIs, vaginal dryness and just things not right down there. I've been thinking about putting together a list of links to threads on this site that go into these issues. The info is all over the place, as you mentioned.

    Just to answer your question, doctors will NEVER tell you about this or give you any suggestions to alleviate it. Yes, they will wait until it is too late. BUT, and this is a big but, I stopped taking Tamoxifen after four months (I was stage IIb) and I am stage IV now. That may have happened anyway. I had spots on my lungs at my original dx. They became mets (my opinion). I also only did two of the four chemo cycles I was supposed to do. My treatment now includes Letrozole. Issues not solved and keep getting worse. I keep looking for answers but I'm starting to think there aren't any. Real solutions involve estrogen and I am afraid of that. But when do I just say let's give it a try and see what happens. Can't they check the estrogen in your blood to see if topical estrogen is a problem? Sorry. I just have questions. No answers. Again, it seems to me, we are faced with making decisions without the information to make them. Maybe you have a good gyn or other doctors to help you. I don't.

  • Fiddler22
    Fiddler22 Member Posts: 4
    edited February 2020

    An unexpected side effect for me is acid reflux (I think that's what it is - acid coming up my throat into my mouth). A major problem as I'm a singer who does a lot of recording and any irritated throat wrecks my voice. I've switched to taking the letrozole very early in the morning so by mid day things are better.

  • Betrayal
    Betrayal Member Posts: 1,374
    edited February 2020

    Add lichens sclerosus which causes intense genital itching and scarring if left untreated. Gyn said cause was estrogen depletion thanks to AI's. Can be treated with topical agents but not cured. Just another bonus from AI's.

  • Teachermom46
    Teachermom46 Member Posts: 4
    edited May 2020

    I have one, too!!!!! I’m debating whether to use estrogen cream because it’s causing me such misery. Ugh!!

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