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Life After Hysterectomy, Mastectomy and Anastzole

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A little back story. I was diagnosed at the age of 41 with ER+ Invasive Ductal Carcinoma in 2018. I had a lumpectomy, 33 radiation treatments and then took Tamoxifen religiously for 4 years. Just when I was starting to feel back to myself and like I had this thing beat, I found out almost 4 years to the day that it came back in the same breast. So this summer, I had a complete hysterectomy. Then 4 weeks later a bilateral mastectomy with expanders placed and then another 8 weeks later, expanders replaced with implants. I also now take Anastrzole daily. This all started 5 months ago. Currently, I’m miserable. My husband and I, who used to have a fabulous sex life, have had sex 3 times since my hysterectomy. All 3 times were so bad that I ended up crying afterwards because I was humiliated. It was bad due to me not getting “wet” at all. We have tried lube but it is still painful and miserable for me and it doesn’t seem like my husband is enjoying it much either. The hot flashes, night sweats and joint pain from the anastrzole have made sleeping almost impossible. All of this doesn’t even touch how devastated I am over the loss of my own breasts.

My question is, it this just how things are now? Is this long term? Does my body eventually adjust? Will I never be self-lubricating again? I’m 45 and I feel like I’ve turned 80 overnight and it does not seem fair. Does anyone have any experience with this? My doctors never lead me to believe that I would be this miserable.

Comments

  • jrnj
    jrnj Member Posts: 407
    edited November 2023
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    Jenni, I feel your pain, I am miserable. Double mastectomy DIEP flap OVARIES OUT and letrozole and cholesterol meds. Joint pain insomnia swelling sweating. The extreme night sweats and hot flashes have gotten a little better. That is the only thing I can offer. And I learned how to dress differently, light loose clothes, nothing tight, no sweaters. I can’t comment on the sex, don’t like my husband so haven’t tried. Sleeping at night is total misery, I’m swollen in pain wake up every 2 hours to pee and wake up with a headache.

  • jenni0102
    jenni0102 Member Posts: 14
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    jrnj-I’m so sorry that you are having to live that way! It seems so unfair, some days more than others!

  • moderators
    moderators Posts: 8,178
    edited November 2023
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    @jenni0102, @jrnj we're so sorry for all you're going through. Have either of you considered asking your doctor about switching to another aromatase inhibitor that might have less/different side effects for you?

    Also, jenni0102 our section on Sexual Health During and After Breast Cancer might be very helpful to you.

    In addition, some podcasts you might find helpful to listen to/read the transcript:

    And, this recent Research News article:

    We hope you find all of this helpful and we're sending hope for some relief for you soon. Hugs!

    —The Mods

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    I think self-lubrication after menopause is a toughie although not impossible. I've pretty much decided it's impossible for me though. How I cope is Sliquid Sassie products, a vibrator, and just having sex because I know it's good for me. The first months weren't the most comfortable. It got better the more regular I was. But it's not ever really comfortable and won't ever be again I imagine but I'm just happy for the intimacy.

  • jenni0102
    jenni0102 Member Posts: 14
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    I appreciate everyone's responses. I apologize for not coming back for a while. I have been in a pretty dark place over all of this. I am coming up on a year of my second diagnosis and I believe I am more angry now than I was then. I wish I had taken more time to make the decisions that I made last year because they are decisions that I cannot take back and that make me miserable everyday. I wish I had not let them talk me into a full hysterectomy and amputating both of my breasts along with both of my nipples. But since I did that, I wish I did not feel pressured to get these implants that even though the doctor and my husband assure me look fantastic, I think look absolutely ridiculous. And yes I know, because people tell me all the time, AT LEAST I AM ALIVE, right?

    Sorry just needed to vent for a minute… I probably should should seriously start thinking about starting therapy. Anyway, I came to ask what everyone is done for skin care once their bodies are depleted of estrogen and they start losing all of their collogen and everything starts sagging, like things weren't already bad enough?

  • kaynotrealname
    kaynotrealname Member Posts: 410
    edited May 27
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    OIls and I really like the lotion One Skin. I haven't noticed much difference but I'm pretty religious about skin care.

  • salamandra
    salamandra Member Posts: 745
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    Talk to your doctor and maybe ask to be referred to a sexual health clinic.

    My doctor recommended vaginal moisturizers. They are not lube like you use during sex, but either a gel or a suppository like thing that you use on a regular basis. I ordered the Revaree brand (pretty expensive) but there are others recommended on the MSK website too. I can't say if it works yet, but I can say I'm not giving up.

    I also take collagen and hyaluronic acid supplements daily, sunscreen always, and try to be very careful with y skin. In the end, though, only so much is within our control.