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Waiting for my hysterectomy

Hi. I’ve never been on a forum of any kind before, but I am feeling very isolated and would love to connect with people who understand what I am going through every day. I like to think I am a strong person but endometriosis has broken me. 25 years ago I went to hospital from school with agonising period pain. Fast forward 15 years and I had my 1st laparoscopy. I’ve had 3 now. The most recent last year. It didn’t get the deep endometriosis and all of the scarring, and the fact that my organs seem to stick back together the second they have been surgically separated, means I am now in a constant state of various levels of pain. I have been signed off work for over 2 months, I have barely left the house and I am very worried about my mental health. My fiancé, who is amazing does everything he can, as do my friends and family, but I get bored of being the victim and moaning. I don’t even feel like I’m the same person. I’m scared I’m going to lose my job, and my mind. I’m on the waiting list for a complete hysterectomy which will mean I go straight into the menopause. I was worried about this, but the waiting lists as they are, I’m more concerned I will be able to wake up every day and cope with this pain, which is sometimes unbearable, even with the morphine and tramadol I’m prescribed. It’s worn me down. I would love to hear from someone who can relate and who has made it out the other side! Thanks for listening x

  1. First of all, I'm sorry to hear you're going through all of this and I can relate completely. I've had four surgeries and my last put me into menopause. I can say, for me, making that decision has meant getting a significant part of my life back. I don't have daily pain anymore and I've been able to become more active and work more as well. I hope for you that you're able to get the surgery sooner than later and that it helps you regain a better, and hopefully pain-free, quality of life. In the meantime, we're here to listen and hold you in our hearts! ~Katrina, Advocate

    1. I’m so sorry. I have been going through some of the same things and I have just requested a hysterectomy myself. I haven’t been taken off work. But when you hurt that bad it is so depressing and tiring. I’m now 4 surgeries in and waiting for a 5th I’m hoping your hysterectomy helps. It’s hard hurting all the time and people don’t understand or trying to explain to people how it feels especially at work can be the hardest. Just remember that you aren’t alone. There is a whole community here for and support at home. Keep your chin up. We are here for you and do understand on a deeper level then most. Again I’m sorry. I would not wish this pain on anybody.

      1. So sorry you are dealing with some things yourself dear warrior 🙁 It really is so hard to function and it is so exhausting dealing with all the pain and symptoms we deal with. I am 3 surgeries in and pretty sure a 4th is coming, so I am thinking of you as you prepare and wait for your next surgery. Hoping you find the relief you need. Appreciate you being here for our community and community members. Sending you such big hugs. <3 -Kimberli (team member)

    2. goodness, I am so sorry you are dealing with this. And so sorry you are in so much pain. It angers me that there is not better treatment options for us out there. And makes me even more angry how long it takes to get surgery/treated. On that note, I can absolutely relate to you. I have had three surgeries so far, and my last one I am almost positive they missed the deep endometriosis., around my bowels and rectum area. And I am almost positive my ovary is sticking to something! It is exhausting and tiring and some days I do want to give up. But here's the thing, we are SO strong. Look at how much we have already been through. We cannot give up now, even when we want to so badly. I know it feels horrible to feel like you keep playing the victim but it is so amazing that you have a good support system it sounds like. I hope you are able to get your surgery sooner and that once you do, it is the exact relief you needed. Please know we are here for you and you can reach out to us to chat anytime. And do keep us posted on how you are doing, too! Sending you big warrior hugs. -Kimberli (team member)

      1. Thank you SOOOOOO much for your lovely replies. I was in tears reading them. It has made a huge difference to me, it’s so nice to know that there are people who truly understand how it feels (although I am very sorry that you are all going through the same thing 😔) I am here for all of you too. I really hope you all get some relief soon. And thank you to Katrina for giving me hope that I will get some quality of life back after my hysterectomy. You are all amazing strong ladies. I am so grateful for your kindness and understanding. Rose xxx

        1. You are so welcome. There are definitely many of us out here who know how it feels. Please keep us updated after your procedure! (And a quick note...I'm not a lady, but a fab nonbinary babe.) 😁 ~Katrina, Advocate

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