Aged 23 & today diagnosed with severe stage 4 endo...

So after 10 years of nagging doctors I finally had a laparoscopy and hysteroscopy to determine whether I had endo.

Turns out with all my nagging and persistence I was right.

Unfortunately, apart from a chocolate cyst being removed the doctor could not remove the endo as my bowel, bladder and womb etc are all stuck together! This was such a shock as I knew I had symptoms but wasn't prepared for it being the worst stage.

Next step - I have a follow up in 12 weeks time. Consultant has suggested that I have a more involved operation with bladder/bowel specialists there etc as they need to ensure the organs aren't damaged.

I really feel like screaming at my doctors saying "I TOLD YOU SO!"

😢😢😢😢😢😢

Xxx

21 Replies

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  • it's not good news but at least now you know. Also, now you know you were right to listen to your body x

  • Yes that's very true :) Indeed I was! I hope many people see this and follow suit X

  • Hope you don't mind me asking, what were your symptoms? I've been nagging my doctor for almost 10 years too and they're not listening so thinking of going private but worried incase it is just me being a whimp x

  • Hello,

    No I don't mind sharing my symptoms at all, I hope it helps you!

    My symptoms were:

    Excruciating period pain (to the point where I was taking 3 codeine purely to just knock myself out). Cramps. Sickness. Feeling faint and actually passing out twice and being admitted to hospital twice! Pain on emptying bowels. Generally having periods so bad I could not physically get out of bed.

    Listen to your own body and just continue with your nagging. I know it's annoying but if they listened to me earlier I may not be in this position now :(

    Don't worry about being a whimp, it's your body nobody else's - so keep up with the nagging please and go private if you need to. Yes it can be expensive but your health is priceless.

    Please let me know how you get on :)

    X

  • Thank you I will xxx

  • Hi Charlotte

    Sorry to hear this I'm 24 and was diagnosed at 23 with stage 4 as well. They literally took samples to test as they couldn't do anything for me it was that bad. I had an MRI to check if the endo was in any organs, has your gynae suggested this? I'm having my second surgery in 3 weeks time, which is the big one done by a specialist and 4 other surgeons specialising in various organs. To make sure I have as much of it removed as safely as possible. I would rather insist on the scan as if it's in any organs and they miss it, it'll grow back quicker.

    I know how you feel I had to pester my doctors and have had various mis-diagnosis over the years. At least now you have a definitive answer and you can move forward and formulate a plan.

    Xx

  • Hello :)

    It's such a relief hearing this from someone the same age as me. He did suggest this at my first consultation but he wanted to do the operation first to diagnose it. When I have my follow up in 12 weeks I will discuss it then as I'm sure it will be something he is keen on doing too.

    Good luck with your surgery - please will you let me know how it goe? I am a little worried about mine and not entirely sure what to expect it. I really hope it goes well for you!

    Xxx

  • Good I feel it's important to see the extent of the disease so they can get as much as possible next time round.

    Thank you 🙂 Of course I will. I'm getting nervous now it's getting closer. I've been told a number of things that can happen you just don't know until they do it. Xxx

  • Yes that's very true, it's a very very sneaky disease isn't it! I'm nervous for mine and I haven't even had it confirmed yet! Just think, you're gonna be in the best hands and hopefully they can sort out as much of it as they can - hope that helps get rid of a few nerves :) xxx

  • Hi

    Yesterday I was just diagnosed with extensive deep endo which they are sure is into my bowel through a bimanual exam. I've never had a lap done have suffered with these symptoms for 5 yrs but always getting misdiagnosed with ibs. They are arranging an mri to see how extensive it is before they decide which operation to go ahead with. I'm older than you 31 but would you be able to tell me what sort of road I'm looking onto for this? I have a 20 month old little boy who has developmental delay. My husband & I were looking at starting baby no:2 next year. That's not looking likely now. xx

  • Hello :)

    I'm sorry to hear that but at least you are making some progress. Your situation is slightly similar to mine, when I attend my follow up in 12 weeks I guess I will find out more info as to how deep it is so I may possibly need an MRI too. I would take it one step at a time and see how things go before you worry about fertility - my consultant told me yesterday that I won't know I'm fertile unless I try (that won't be happening yet!)

    If you are given the choice of having an operation to try and remove it then I would say go for it :) I hope that helps you.

    Xxx

  • Please make sure you are under a bsge specialist centre,

    Good luck

  • Thankyou :)

  • Hi girls Im 23 too and it's nice to know I'm not the only young girl out there ! I have stage 4 as well but not heard anything about having organs and things checked ? Is this something I should as for also do any of you suffer from sickness as I seem to be violently sick very often x

  • It's something I'm going to ask for when I go to my 12 week follow up - if I were you I would ask too, no harm in asking :) I used to be sick now and again when I had my periods but it always seemed to be if a cyst ruptured. You could maybe ask your GP for anti-sickness tablets, might help to get rid of one little problem at least :)

    xx

  • Yeah I will do thanks they don't seem to be very bothered about anything lol x

  • As Tboag said please girls make sure you are under a bsge centre! I was diagnosed at 25 and went through 4 operations before I realised the gynaecologists there were only winging it. Under a bsge centre now and two operations down and I feel normal again which is the first time in years! I wish I had known there was such a thing as a bsge centre at the beginning as i am sure the endo would not have spread anything like what it did and I possibly would only have needed one or two laps.

  • I've just double checked and where I'm having my operations is a bsge centre :)

    Glad to hear you're feeling normal again - I can't wait to be in that position!!!

  • Thank you. I'm just dreading operations & recovery periods with a toddler at home lol. We don't have a bsge centre here in Northern Ireland but they are transferring my care over to an endo specialist. Who I did see 5 yrs ago but he couldn't perform the diagnostic lap as I had injured my back. Now it's had 5 yrs to grow & wreak havoc in my body. I seen gynae 2 months ago and she completely missed it only for me going back in yesterday to have the coil put in another doctor done the bimanual exam and could feel it. I would've been sent on my merry way. Scary x

  • I'm pretty much against surgery for this unless you go to an endo clinic where they really know what to look for and how to get it all out .

    I stand firm on stopping cycles till you want to conceive

    Then go right to IVF where they can bypass all the nasty endo

  • I don't blame you - I was finally trasferred to an official endo clinic and I wish it was done sooner!

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