HTR after cancer

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When I was 22 I was diagnosed with stage 3 ovarian cancer. I had a hystorectomy and have been on hormones ever since. It has been two years since this happened, and about every 3-5 months my hormones go completely haywire. I gain a ton of weight even though i am very active and eat clean. I get so depressed sometimes I cant get out of bed. The headaches and mood swings are unbearable. I get uncontrollable acne. I have a ton of wrinkles. Everytime I get my levels checked its too high or too low.  This time around my doctor upped both my estrogen and progesterone to .050 of the vivel dot patch and 400 mg of progesterone. It started to get worse. My oncologist told me not to take progesterone at all, so i tried that. Then the hot flashes got worse. So i cut my estrogen to .25 and progesterone to 100mg. It worked for about a week and now all of the symtoms are back. I really dont know what to do. i'm 24. No one my age understands any of this or how I feel. They all think I am crazy. I know most of you arent doctors but I was hoping I could maybe just speak with some of you just to relate. I would really appreciate someone to talk to. Does anyone else have this much difficulty getting their hormones under control? 

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6 Replies

  • Posted

    Hi Ashley, I am so sorry you are going through all this and at such a young age.. Hormones are a minefield and one size does definitely NOT fit all. Hopefully someone here will be able to help you more with their experiences. I just wantedto support you. I think keep the trial and error going and fingers crossed you will find your ideal combination. Have you seem a Menopause specialist?
    • Posted

      Thank you for your kind words. No I have not. I have seen an endocrinologist. Is that the same thing?
  • Posted

    What a terrible thing to happen to one so young.  When I had to have an hysterectomy and my ovaries removed at age 38, I was put directly on 100mg oestradiol (implant at the time, then patches and gel).  It was wonderful. I never actually suffered menopause till some years later when I was suddenly suffering severe head sweats etc. and 6 years later found to have a pituitary gland tumour.  The excess prolactin was making my oestrogen hrt ineffective.

    When I was treated for that (Carbergoline), the change back was immediately effective.  No more sweats.  However, with various changes to patches and gel, my oestrogen does not work as well.  I seem to need more and more.

    Without a uterus, I did not need progesterone but my dr tried me on it.  I can't say it did any good and progesterone is an antagonist to oestrogen, so I think it was also reducing the effectiveness of my oestradiol hrt.  My endocrinologist also questioned my use of progesterone.  It was prescribed for me by a dr when I told her that I had had severe endometriosis which was removed as much as possible during surgery.  She said oestrogen can activate any remaining bits of endometriosis and progesterone deactivates it.  I don't want anything antagonising my oestrogen, so after giving it a long go, I have stopped using progesterone.  In my experience, it is oestradiol that is my saviour - not progesterone.

    I think you really need to see a gyny who knows about menopause or some other menopause specialist as Pat says.

    • Posted

      Wow! You've had to deal with a lot. I had no idea progesterone does that. It sounds like I need to get off of it. I also didn't know a menopause specialist was a thing. Is that different from an endo?

    • Posted

      Yes - my endocrinologist does not involve himself with menopausal problems, but he was concerned that I was taking progesterone unnecessarily.  Endos also deal with diabetes, and adrenalin type hormones.  Probably other too.

      You might find a menopause specialist at a women's clinic, a family planning clinic, or seeing a gyneacologist.  Some gp's might include menopause as a special interest.  Otherwise you get run-of-the-mill advice - every size fits all.

      It may be your low oestrogen that is causing your symptoms, as it is with me.

       

  • Posted

    Ashley I strongly recommend you see a Menopause specialist. You may be able to get a referral from your GP (they should be able yo help you find a clinic at least) Then you should be able to get your oestrogen levels checked and have a prescription tailored to your specific needs.

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