Recently Diagnosed Feeling Horrific and Beyond Scared

I was diagnosed with Endometriosis and ando last week. I'm currently on a waiting list for surgery but I've since come on again and in agony. My whole body is shaking and I'm incapable of doing anything. To an extent I can cope with the pain but my head is in a right old state. I only got married 6 weeks ago. Now it looks like I won't be able to have children and I feel like I'm grieving for the babies I will not have. I'm trying to carry on as much as normal but I just can't seem to find any point in anything any more. I just wondered how you coped everyday and don't just curl up and want to hide, cry and deal with the failure of my body

10 Replies

  • Did they tell you at the hospital you can't have any children as I've heard women who have endo and ando have gone on to have children?! Im waiting for my full diagnosis on Wednesday but I was told after my lap I definitely have endo. I'm dreading it X

  • They weren't specific but he mentioned fertility treatments so I think they have a pretty good idea already. It's going to be my first lot of surgery and I'm scared. Apparently they can tell I have ando from my ultrasounds as it was obvious. This sounds selfish but all people keep saying to me is I know someone who has it and whos had children but I just want to scream in their faces and tell them they don't understand, they don't feel it and it's not as bloody simple as they make it sound.

    I guess I'm just angry with it all. I feel like my own body is destroyed and I have no control over it. I feel like a failure as a woman

  • I really understand how you feel. I have a gut feeling I have ando too as on my ultra sound it showed a 'bulky cervix'. All I want is to have children and I am 27. My friends and family keep saying I will be able to have children OR you don't want children, its hard work etc and they are the ones who already have children!!! I think because people can't see it, they don't understand it, as it doesn't just affect us physically but mentally too. X

  • The mental side is doing me more damage than the physicaL. I just don't know how to cope with it. Children and my husband were my dream then someone drops the bomb And expect you to just carry oN. I will never meet the ivf requirements on the Nhs as I'd have too loose about 8 stone. I can't exercise when I'm in pain 2/3 weeks a month. I just feel like it's all pointless. To top it all I work in a primary school so I'm surrounded by small children and babies. It tears me up every day. I feel like no one really understands. All my friends and family have children. Them telling me that I don't want them because they're hard work makes me so angry. You wouldn't say to a guy with no legs oh your not mssing anything they only annoy you and get tired.

    Sorry I don't mean to sound deranged. I'm just emotional central!

    Thank you for taking time to reply to me x

  • No problem. Im finding the mental side hard too and I have PMS too which doesn't help! If you ever want a chat, just message me. It's nice to know that there's other women who cant cope with it X

  • Don't get disheartened! I too am a teacher but secondary. I am struggling to have children and I have stg4 endo I have had my left ovary and tube removed and about to get my right tube removed a cyst on ovary drained, in the hope I can do IVF. I too am overweight but decided to loose weight I have lost nearly 2 stone and my BMI is now at 30 I just need to loose another 9lb to get BMI to 29 for ivf on nhs. If we want this we can do it. You will have up and down days and worse days when people around you announce their having a baby! All you can announce is your feeling unwell due to shit pain that you can't control. So from this week I decided to take control and try fighting this horrible disease!! I have booked acupuncture for 2 wks time and I'm out trying to run doing couch to 5k keep me focused in something else. Treat yourself to something nice and try getting hope from somewhere because otherwise you will let this take over your life!! I am in pain 2wks of the month but when I can I focus on nice things remember u r a person and u have a life get something out of it don't let this beat us 😃😃

  • Hey girls, form reading yours posts. I'd feel the same. However, as an objective person at this stage..... Retrograde menstruation diagnosis at present.. I'd say to just deal with the facts only. it effects fertility but doesn't necessarily mean NO babies!! You need to keep strong with this condition, it's only for the strong people. All the pain we have been through already. Keep focused on things going well and if you haven diagnosis you know what your are working with but often we imagine the worst and the reality is a lot better and nicer than our mind predicts. Xx

  • Thank you xx

  • Thanks :) xx

  • Take a deep breath and look at what you DO have :) you got married 6 weeks ago and your new husband (im sure) is going through the same things in his head. theres a method i used when i found out (when i was 16 and wanting to be a mum was all i wanted to do) and that was to write down all the irrational thoughts and all the things i could understand and everytime you though "this isn't fair, why me!" you write it down and once you've got a big pile, get an over proof bowl and fill it with them and set them on fire. because at the end of the day your body isn't letting you down even though it does feel like it is, its constantly fighting the endo, you just have to be strong and help it! the doctors will do everything they can and if they seem to be slacking off then pester them.

    My main advice is, get the pain under control. nobody thinks clearly when they are going through all the pain we go through on a day to day basis. try not to dwell on the pain and definitely don't let it make you feel sorry for yourself... get angry at the pain. if someone was kicking you all the time you wouldn't feel sorry for yourself... :) take a deep breath

    I have to remind myself ALOT more than i feel i should that life is a bitch, but i need to be a bigger bitch to win. :)

    you will get through it i promise.

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