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Advice needed

Hello! I’m a 30yr old who has had many surgeries for adeno/endo (stage IV). At 22 (2011) I had a TAH (left my ovaries but took everything else). Later 2011 had LoA (lysis of adhesions/endo), 2012 had R ovary/appendix/stomach wall muscle removal due to endo, 2012 LoA, 2013 LoA, 2013 L ovary out, 2014 LoA x2. Went 8 mo without any HRT before going on 2mg estradiol, and the endo still came back. Have another LoA scheduled in Dec.

Anyone my age have luck going off all HRT? I don’t want to because of my age, but can’t keep doing these surgeries! 5 have been hip to hip incision the rest laparoscopic.  Any bad risks being hormone free at age 30? I worry of the long term risks. Thanks in advance!

Community Answers
  • Endo Warrior moderator
    2 months ago

    Hi @endosucks88, I am so sorry to hear of your terrible journey with endometriosis. I’m sorry to hear that it keeps coming back despite several surgeries.

    Like you, I’ve had a total hysterectomy (including taking out my ovaries and cervix), although I had mine done at the age of 39, so a bit older than you. I’m on HRT, but recently had my HRT cut from 2mg down to 1mg. I have to admit it was a bit of an adjustment and I do have the occasional hot flash, my memory isn’t as good as it used to be and I am tired more often. However, my body did adjust and as I am suffering with high blood pressure, reducing the HRT was the right call for me.

    You ask about the risk of going HRT free at the age of 30. Of course any decision to go without HRT should be made in discussion with your doctor, as she/he knows your body best, but it does sound like you still have residual endometriosis left which may react to the oestrogen levels in your body. Although when I asked my surgeon (an endometriosis specialist) about the possible effect of HRT on any endometriosis, he told me that the fluctuating levels of oestrogen is what triggers the endometriosis and a steady dose as administered by HRT should not have any effect.

    The main issues with cutting oestrogen is bone density loss and bladder/vaginal atrophy. There are supplements available that can counter those effects, but it’s best to talk to your doctor about them. You can also look into using oestrogen gel rather than pills as this has a different effect on your body.

    There are certainly many women your age who cannot use HRT for a variety of reasons (breast cancer survivors in particular) and they manage as well. Again, do share your concerns with your doctor and maybe work with a nutritionist to find the right supplements (if you can afford it). I wouldn’t stop taking HRT without the help of a doctor.

    Wishing you much strength with your decisions.
    Christina (team member)

  • Jessie Madrigal moderator
    2 months ago

    Hello @endosucks88, thanks for reaching out. Let me just say that it sounds like you’ve been through so much, and that I feel your pain, and fatigue, because we are living similar lives. When I turned 28, I had decided I was going to live hormone-free. I did this for almost a decade, but it meant living in immense pain, and suffering from PMDD which limited my life enormously. After my endo diagnosis, and several surgeries I decided I needed a break, emotionally, so I could carry on with my life. I wanted to be able to do what other people do etc. I wanted the suffering to stop.

    So I went on progesterone, and it took a bit of trial and error until I found the right combination. It’s not perfect, not a permanent solution, but it’s given me 10 months of no periods and A LOT of relief. I have several friends of mine on HRT, living their lives fully, and supported by their doctors.

    Hormones have a reputation of being a bit of a scary subject, especially with past research that has linked them to cancer and the like. But the hormones that are available to us these days, come in so many different forms, and many are low risk. Obviously, it depends on how our bodies react to them.

    I take the pill form of the provera injection, and I take a lower dosage than the one my endo specialist recommended. I did this after asking fellow endometriosis patients. It is working for me, for now.

    I hope this helps, and that you figure out what works for you. Please know that we are here for you, so reach out whenever you need 🙂 – Jessie (team member)

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