Endometriosis after hystercomy

Hey I’m Jess, I’m 36 mum of two boys and endometriosis survivor. I  always had dreadful periods pretty much from the get go. No-one had ever investigated if there might be a reason why I bleed for 10-14 days at a time and had terrible debilitating pain every month and blinding migraines. I don’t think my mum had ever heard of endometriosis and she and my grandmother had heavy periods and it was just a case of take a panadol and get on with it. One of my first memories of periods was the third form at school having this dreadful stomach sinking realisation that I had’ flooded’ at school. I remember trying to discretely tie my wool Jersey round my shirt dress waist and make a bolt for the toilets and then a quick exit on my bike home. At 13 this was mortifying. Anyway, going to the doctor about a period just wasn’t ever a consideration. The older I got the heavier my periods, everyone said it’ll settle down when you have a baby. I had tried the pill but gained so much weight on it and it made my migraines worse so I stayed away from it. I loved being pregnant with our first boy, and the bonus of no periods was amazing. I got sacroiliac joint dysfunction toward the end of the prenancy and the resulting lower back pain replaced the lower back pain from periods for the rest of the time. I got pregnant pretty quickly with our second son a and after his tumultuous and difficult birth I have had constant lower back pelvis, hip and leg pain that radiates down and never creases. It gets worse for two weeks every month. I had a uterine ablation, prolapse and tvt surgery when our youngest was three, to try and get the bleeding under control and hitch up my bladder from his birth. The bleeding slowed for awhile then came back worse than before. Finally nearly 3 years ago I had a hysterectomy at 34 and they discovered I had endometriosis and the surgeon also diagnosed me with polycystic ovary syndrome. My first thought when I came out of surgery and was told there was endometriosis was relief. Relief that there was finally an explanation, that it wasn’t all in my head. I wasn’t a whimp that couldn’t cope with pain I was actually in pain. It was pretty wide spread and he removed it from kidneys as well. Nearly three years on and I’m still in pain, the pelvic pain is better and bleeding is obviously resolved but I still have my ovaries and the lower back pain, leg pain, and hip pain is getting worse all the time. Apart from the pain, it’s the fatigue and migraines and bowel pain I find so debilitating as well. I’m a busy mum who is working and studying and looking after a family and some days I find living with this crippling disease such a life sentence. My doctor has referred me back to Women’s to see if I can get more help. I swear it must be growing on my sciatic nerve or somewhere to cause this pain that radiates down my legs all the time. I have struggled identifying with others who have endometriosis as I didn’t have the infertility issues that seems to be so prevalent. I am thankful for this forum and place for information and other people who know how it feels. Should I be asking for my ovaries to be removed? If the source of the oestrogen is removed will that relieve my symptoms? I just want to take on my full time studies to be a midwife next year and be a good and present mum and wife and I really want to be able to have the energy and health to do it all!

4 Comments on “Endometriosis after hystercomy”

  1. Hi,I was almost the same as you all my life and I am now free of pain and suffering,i had excision and a full hysterectomy everything out and have never felt better i am also not on any hormones and apart from the odd hot flush life has never being better. I was 47 had had my kids and was a cripple as you are,I couldn’t move or lay down it hurt so much, I had scarring, Fibroids and Adenomyosis,and partial hysterectomy first,I tried everything then had a full hysterectomy , Find a Endometriosis excision specialist you won’t look back,i just wish I had known what I had and done it sooner. Life is better than ever.

  2. I have just had my first laparoscopy this week to see if i had endo, i had severe self doubts that it was all in my head too as we also had no problem having 3 healthy babies. I had a lot of issues with my right leg, numbness, tingling, pain, especially when i was tired, exercising or had been using it alot. Every specialist i asked doubted it had anything to do with endo. Also my first surgeon i was going to have operate did an internal exam and said – your uterus feels fine, we will most probably find no endo. I felt discouraged. Anyhow after excision surgery on Monday they found i did indeed have mod-severe endo, just not wide spread but deep. And a very large pocket right on top of the nerves of that right leg. So there you go…. am taking awhile to recover but am really hoping for relief once the healing is done 🙂

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