I'm scared about not being able to conceive! Has anyone got similar endo to me and still managed to conceive?

I'm 21 and was diagnosed with endometriosis during key hole surgery 4 months ago. I had my first appointment with my consultant since the surgery today and found out that everything is a little more serious than they first expected. The main thing that they keep telling me is that i'm very young to have endo but also to have it to this severity. The organs it is attached to is my kidney, bowel, liver and they seemed quite worried that they also found it was as high as my diaphragm, and that this could therefore create a hole in my lung if it carries on. I will be having key hoe surgery again in the next 6 months to remove the endo but there are a lot more complications this time! I asked my consultant the chances of me being able to have a child and he said he would recommend me having a coil during my next op and then try for a baby a year prior. He seems to think after that my chances are very slim :(. I just need some help on what has happened to others, as i'm only young and would really love to have my own child one day!

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  • Hi

    I'm sorry to hear your story. Unfortunately I can't help exactly, but I have been told i have a blocked tube and my chances of naturally conceiving are slim. I've been told IVF will be the best option. There are always ways especially now-a-days, but obviously i don't know what's best in your situation. My advice is to write down your questions and make sure you ask everything as most consultants just tell you basic info and don't always answer everything you need to know until you ask. Good luck with your next op. With any luck they'll be able to clear it for you which will improve your chances a lot. X

  • thank you 'vix04' i think they're more worried about after they remove as much as they can, it will come back within a year and he seems to think after that my chances are much slimmer. thank you for you advice! It's so hard to ask all your questions to your consultant, especially when you only see them once every 3/4 months. I hope so, but i'm so worried about everything! x

  • Hi there,

    I'm 18 and currently wondering the same thing about my chances of conceiving. I had pain from 11 and was diagnosed bu lap at 16. Although they never gave me any results back as to how bad it was just that I had Endo.

    My specialist thinks I may have a little on my diaphragm as well although my organs aren't stuck together. My friend who also has Endo and is on this site has her organs stuck together and has been told she almost has no chance of getting pregnant and she's only 17 so we're getting younger and younger.

    I am having a lap on 21st July to remove Endo and see where it is. They will then tell me my chances of getting pregnant. I'm absolutely terrified of what they're going to tell me, I want a child now but my dad wont agree with it so if they say to start trying soon then I don't know how I'm going to work around it.

    I hope that your story gets more positive and if you ever need anything, don't hesitate to pm me.

    Take care and good luck,

    Leya xxx

  • Hi,

    well you're quite lucky that they diagnosed you quiet soon! I've waited 10 years to find this out, and then also to be found that because it has been so long, it's not only deep but really high up! aww really? They should have given you some results when you went to see a consultant? When they done my fist lap they were only expecting cysts, so i think it was a shock for him and myself with the outcome.

    Did your specialist mention operating on what you have on your diaphragm? He told me that it's such a thin layer that he won't be operating on that as of yet, but they will have to monitor it. Aww has she? and yeah that's young too! Do you know what organs she has stuck together? I think the thing is that we're not getting it younger, but they're just not looking into it when we are younger? Like i was in and out of hospital for years with my period pains and fainting almost every month! When i was 16 they put me on the pill and my mum mentioned whether it could be something like cysts or endo and they just replied with the fact i was 'too young' but by the looks of it, there's no age range! especially when everyone starts their periods at different ages.

    aww are you? that's not too long away now! At least you'll know your chances. I know how you feel, it's my last year of uni starting in sep and my mum wants me to finish that before having a baby, but i'm not sure whether i'll be able to have any in a year by the way my consultant was talking! And you never know, you may be lucky and they get rid of most if it, and it could not come back for a few years! I think it all depends on the severity of it.

    I hope so too! I've got to wait for my ultrasound scan for them to check on my kidneys and then will hopefully have my appointment for my next lap! I hope yours goes well, and that the outcome of you being able to have children is better than you expect! It's so nice to talk to people who actually understand what endo is! :)

    Good luck xxx

  • My specialist hasn't mentioned what he wants to do if there is Endo on my diaphragm just that he's looking to see if its there.

    My friend has her bowels, bladder and I think intestines stuck to her uterus and ovaries, she also has a blocked fallopian tube.

    You're actually born with Endo as its a faulty gene, its passed down from our mothers and there mother and so on. Like you say we all start puberty at different ages so its never the same age for diagnosis, some people don't even realise until they give birth or have a hysterectomy because they have no symptoms until they have trauma or disturbance to the womb.

    I'm doing my final year at college ready for Uni next September so don't know whether to not apply just in case he says to try for a baby or whether to risk applying and having to quit.

    I'll let you know how my lap goes and hope that yours goes well too!

    Leya xxx

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