My life with endo

By spulver

1 min read

So I’m new to the group, my whole family (women) have all had hysterectomies before age 32 due to endometriosis. I’ve always struggled from terrible periods and a few miscarriages before my final child and then my tubes tied (only born with one ovary).

I’ve tried almost everything my doctor has prescribed out there. After my tubes were tied, I was finally diagnosed after laparoscopy to remove what was thought to be polys and see if I truly had endo. They couldn’t remove it all because it was too much on my ovary and in uterus. I tried orlissa and that didn’t work and gave me terrible side effects. I have severe migraines with auras and stroke risk due to my family history plus my migraine auras. So now to start lupron shots and progesterone. I’m already on antidepressants because of being a mother of 3 at 26, my body only allows me one good week a month without bleeding, recovering from low iron or ovulating with terrible pain.

I would love opinions on what to do. My doctor wants to try the shot before the final resort but I don’t think my depression and self esteem could handle putting on weight, let alone that it seems like a bandaid to a bigger wound.

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Jessa F Member
Hello <inline-mention user-id="2060208" username="spulver"/> , thanks for reaching out to us. I have struggled with treatments too, and for a very long while (years) I avoided hormonal therapy because of my history of depression. Hormonal treatments will affect each patient differently. For me, progesterone has been the one thing that has worked, even after trying a similar kind of hormone, its close cousin, progestogen (which didn’t work, at all). I take progesterone in the pill form. My endo specialist suggested I take the high dose recommended for severe endo cases (30mg). I spoke to fellow patients and for them, that amount turned out to be too high (several side effects were just too tough to live with, some mentioned painful vaginal dryness, migraines, etc). So they reduced it to 20mg and that was the sweet spot. It has worked out that way for me too. None of the patients I spoke to mentioned anything about weight-gaining. It didn’t happen for me either. The only side effects I got was acne (which is something that has affected me in adulthood quite a lot, and I’ve had had to learn to accept it and not be ashamed of it), but that has improved after 5 months of taking the pills, my skin is much better at the moment. No mood swings (I used to suffer from PMDD), no low moods. I do bleed sometimes, intermittently, and it’s more spotting than actual bleeding. Right now, I can say that progesterone has given me my life back. I don’t know how long this will last. Lupron is a mighty form of treatment. I have spoken to fellow patients that have taken it and honestly, I haven’t heard great things. It is a tough one, with hard side-effects. But it may work for you. It’s a bit of a lottery. My advice, and it’s all from my own personal experience, as none of us on this platform are doctors 😉 is that your mental health is SUPER important. I take my pill with no breaks, meaning I get no periods. This means I don’t lose 10 days out of my life every month, I don’t het any PMDD symptoms, no manic thoughts. So it has impacted my emotional wellbeing positively. I hope this helps. Please know that you can contact us any time, and we will do our best to reply and support you as much as we can. You are not alone in this. You have an entire community behind you, including me! 😀 – Jessie (team member)
Endo Warrior Member
Oh <inline-mention user-id="2060208" username="spulver"/> , I'm so sorry to hear about how much you're struggling. As Jessie said, your mental health is so important. I struggled a lot with finding the right hormone treatment, but nothing really worked for me. I muddled along for years with depression and anxiety and in the end I chose to get a hysterectomy. My kids had complained for a long time that I was always upset and tired; and they were right. I can't give you advice on what to do, as I'm not a doctor, but personally the hysterectomy changed my life. I felt like a new person: more energetic, no more pain, no depression or weight gain. Mind you, hysterectomy does have its own problems and it's not a surgery to undergo lightly, but it worked wonders for me. I wished I had done it sooner (I was 39 when I had my hysterectomy). Whatever you choose to do, I hope you find the right solution for you. This community is amazing for getting advice and support; I wish I had found it years earlier myself. We're here for you. Christina (team member)
Kimberli Davino Member
Hi there dear <inline-mention user-id="2060208" username="spulver"/> . I am sorry to hear of how much you were struggling and all the unknowns. I wanted to just check in on you since you last posted, and see how you were doing and what decisions you ended up going with. I hope, whatever road you took, you have found relief and you are feeling tons better! Sending you gentle hugs and good thoughts. -Kimberli (team member)