Hi everyone! I was diagnosed with endometriosis pretty recently, in spring 2018 when I had my 1st laparoscopy excision surgery. I was told I had an endometrioma cyst in summer 2017 and had experienced symptoms for many years. The first surgery found superficial endometriosis and my symptoms pretty much went away for 6 months. However, they came back around Christmas 2018 and I had my 2nd excision surgery in Feb 2019. The surgeon was horrified by how quickly it had come back and how much worse it gad gotten. It was stage 4 and now, only 6 months later, I’m in agony again. Had to got to the hospital after my GO thought I had appendicitis but was hit with another surprise diagnosis of PCOS. I haven’t had a life for over a year now and this is impacting on everything...
My specialist has recommended a hysterectomy but I don’t know if It’s right for me. I don’t feel ready to have children but I’m terrified of going into early menopause. After taking Prostap my hair is thinning, my skin is rubbish and my mood is so low. I know this sounds superficial but this condition makes you feel “less of a woman” anyway, so losing your hair etc is a massive deal. On the flio side, I cannot live with the constant and debilitating pain anymore and the stress I’m subjecting my partner and family to is unreal.
Help is greatly appreciated 💛
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Tracy_lou
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Hi Tracy Lou I am in the same predicament as you, it’s ruining my life & my families. I am never well and my work is suffering too. I will follow your post.
I am told I am too young for a hysterectomy as I am 37 but I can’t deal with this pain any longer, vomiting etc ....
My heart goes out to you, it’s a terrible condition and besides the physical symptoms, the mental impact is so hard too. The stigma attached to “women’s troubles “ makes you feel like you’re constantly trying to convince people about your pain x
Hi Tracy Lou I know you are right. I am always saying to people it’s not like a normal sore belly, it’s excruciating, like labour pain. I have other conditions too and manage to work (just), it’s so hard trying to keep yourself as well as can be x
The clarifications needed are whether you are having your ovaries removed also and whether they are performing excision surgery at the same time as the hysterectomy. A hysterectomy on its own will do little to help long term.
It should not be sold a cure for everything, but in some cases and with the right surgical team, it can improve things dramatically. It can reduce current symptoms and pain, and it will slow progression of the endo.
I had slowly lost myself and my life as the endo slowly progressed through my body. I had a full hysterectomy (with ovaries removed) and excision surgery in December 2018. It has been life-changing. My pain is mainly gone and now completely manageable, but my overall health and mental wellbeing are most markedly improved.
So far the menopause “symptoms” have been fine. Hair/skin still fine, no hot flashes and mild headaches every couple of weeks. I’m able to look after myself much better now that my being and my time are not consumed by endo constantly.
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