Big Decision

After 21 years of suffering I am ready to make the big step of opting for a hysterectomy. Diagnosed with endo at 19, following 5 years of misery since my periods started. A burst cyst led to tge first lap and the eventual diagnosis. Tried lots of treatments including the pill which gave some relief over the years. Have had 8 laps to drain cysts over the years. It has affected my ability to have sex and ultimately my fertility. Had three failed rounds of IVF over the last two years and now I have had enough. Been very poorly this year and my consultant prescribed zoladex implants, they worked for a while until injection 5 ( and 6 which brought forword ) induced the worst 'period of my life' which lasted for just short of 4 weeks. Weird as I am on the pill too. Been for a couple of scans, CT showed a kidney stone which only made matters worse but ultrasound could not even see my ovaries. I have tried everything now , over the years, I think I am ready to go for the hysterectomy. Any one out there had one and can offer any insights or advice. I am 40 and have made peace with the fact that I will never have children.

9 Replies

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  • I am so sorry you've had to suffer so badly for so long I'm in tears after reading your story I wish I could help you. I'm only 18 and I'm in a lot of pain right now I'm waiting for a laparoscopy to see if I have endo, I'm going in on Monday I'm just getting worse every day I thought I felt bad until I came on here and read other women's stories and I really feel for you all. I wish I could give you a hug and make things better for you! I hope you get some relief from pain soon x

  • It's one of the hardest decisions to make. But having undergone a hysterectomy and removal of my ovaries last year just before my 39th birthday, I can honestly say that at nearly twelve months on, it's amazing not to be in pain!

    Emotionally I've had some wobbles, my HRT needs tweaking - 40 in April and I've got spots like a teenager!! - but it was the right decision.

    I wish you all the very best with your journey and hope like me, it frees you from a half-life of pain, discomfort etc....

  • Hi I'm so sorry to hear about your journey with endo it is so familiar to me, I am 38 and like you diagnosed as a teenager. I was very fortunate to have children,

    I have just had full abdominal hysterectomy six weeks ago and my endo pain seemed to disappear straight away. I still have a sore bruised tummy if I do too much but even a few days after surgery if I sat or laid still I had no pain at all which is new as I can't remember last time I had no pain as I was so ill before. I am really hoping it works and no regrets as yet, just have to give my body time to recover x

    Good luck and take care x

  • Check out the Hysterectomy Associations brilliant website. Linda Parker Hardman started this website and it guides you through just about every aspect of Hysterectomy, personal experience and forums, updates etc. Like you I am at the point at 54 that I know I need to be referred back to a Endo Adhesion specialist gyne as although I am in menopause now, I get crippling pinching pain in my right pelvis virtually constantly now, low back pain, hip pain and its made more confusing by Diverculitis Disease and Hernia confirmation along with my long history of endo, adhesions and loads of investigations and procedures and treatment. I know I am at the end of the road treatment wise but am struggling with the final hurdle decision! My Gp indicated they usually do a lap first before hysterectomy and might decide after all to try a less invasive procedure but I agree it is a very big scarey decision. However, it might be the key to the rest of your life but you need to ask them about adhesion barriers ie which one they use and how effective it is. Scar tissue (adhesions) can be a problem for some but not everyone. Some are apparently more prone than others to formation of adhesions. If it gives you back your life, nerves aside it must be worth a deep breath and green light to go! I know where your at and I'll get to the surgery doors eventually myself as living like this is really not an option!

  • I have had a hysterectomy 14 weeks ago due to suffering from endo all my life.I am 35 with no children.It is been very hard and i am yet to be sure wether i did the right thing,but i was in so much agony in the end i had no choice.Just try and be absolutley sure when u take this step it is not easyFeel free to message me if u want any more advice.xx

  • Hi

    I am sorry to hear you have suffered for so long, I understand what you are going through, i suffred for 30 years. I made the decision to have a hysterectomy 2 years ago and I went into it knowing it wasn't going to cure me but to give me a better quality of life which it did. The no children is another issue, All i ever wanted was children and at 44 I knew the time for children had past but it didn't make the decision any easier. After the emotion was something else, not helped by the hormones and menopause kicking in and the general anaesthetic always makes you emotional. My emotion revolved about feeling incomplete as a woman. As time went on and things did settled down and yes I am satisfied I made the best decision for me, i have had further removal of endo since but I have a life which in itself is like a dream come true.

    It is only a decision you can make no matter what anyone says, I could only go through with it when I had come to terms with the fact I would never have children. If I hadn't got to that stage I think I wouldn't be able to cope with the after emotion.

    I hope this helps you. Big hugs for you while you make your decision. Xxx

  • Thanks for all your comments and replies. I don't feel so alone with this problem now x

  • Awww so sorry to hear your story my love, I too had the same but was lucky enough to have one son, was on fertility etc and un diagnosed endo for years till my hysterectomy. I had a full one leaving the ovaries, was great for about 4 years then cysts started on my ovaries, had them removed 2 yrs ago & a saline organ wash. Was put on HRT and have been suffering with debilitating migraines, so came off the HRT & wham my endo is back with a vengeance. Apparently the HRT does shrink the endo, but as soon as you stop the endo starts again, I'm going through the change & still suffering with severe abdominal pain, bloating, bladder & bowel problems & I'm exhausted. Waiting for a scan which may not show the endo. Would love to know why doctors ignore this disease. I was told by my dr that I'm 46 & have no eastrogen so she doesn't think it's endo......she's not got a clue!!! Good luck ladies & keep your chin up! Xx

  • Hi, its so painful on so many levels. I dont know if u would find this interesting but after having worked in a childrens home i realised that i have the.heart and capacity to love a child whether it is 'mine' or not. Maternal feelings and acts are there with or without womb and r part of our personality. Tough tough times and its hard to think on this level when in so much pain.....perhaps imagine thinking and feeling more clearly about ur.future after op? Kindest thoughts x

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