Coping with my diagnosis

I've been diagnosed with mild endo (preliminary). I've been referred over to the consultant . I asked my GP if the ultrasound indicated any fertility issues. He said it didn't look like it but I needed to go to the consultant for a full diagnosis. Now, I'm only 20 and absolutely heartbroken. Glad I found out early so it could be treated and managed but I'm struggling. I suffer from anxiety anyway and this has completely thrown me. I feel like Ending my life because all I've ever wanted was kids and I feel like that's been completely taken from me. I know they said it was mild but I know you can't be sure until they've really got in there. Has anyone got any advice to help cope with the diagnosis? I really feel alone right now :(

13 Replies

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  • Oh bless you 😘. Don't be sad, there's lots of help and support.

    On what basis does your GP think that you have endo? Where have you been referred to? X

  • I had a transvaginal ultrasound to check for cysts initially. I had loads of symptoms of PCOS which is why I initially went to see him. He then called me on Monday to say they'd found a small cyst on my left ovary and mild endometriosis. He didn't tell me where the Endo is. He also said my fsh levels are borderline so they're retesting. I just feel so confused and alone, no one understands around me which makes it a lot worse :( X

  • I've been referred to a specialist also X

  • Make sure it's an endo specialist (look at bsge.org.uk to check). I know how you feel. I was totally blown away when I discovered I had it. It took 25 years!

    Please try and be positive. This is not the end. You are so fortunate that it has been found when you are so young and that we live in times where the prognosis is so much better. I would suggest joining endometropolis on Facebook. There's so much support and education on there.

    There is so much that a good endo specialist can do for you. You are only twenty, all is most certainly not lost. I wish I could give you a big hug and tell you that all will be ok. All I can tell you is that I have three children. It is possible! Stay strong.

  • Thank you so much. I've joined the group It looks like it will be really helpful. I'm so happy you were able to have children and hopefully that will be me too in years to come xxx

  • Please don't be sad! 🙂

    I j me it's easy said but also please try not to worry too much until you know the ins and outs properly, it may be that it won't affect your fertility at all :)

    I have very severe endo, a big surgery (laparoscopy) to remove it/separate adhesions (literally everything stuck together) etc in May 2015. By March 2016 it had come back, very painful again so me and my partner decided to try for a baby before it was "too late". It took me 3 1/2 weeks to conceive! I'm now a healthy 18 weeks pregnant and although I will have to have a hysterectomy (for many other issues found on top of endo) I like you worried myself sick for months/years about it. There is no need :) they can do amazing things especially when it is found early 😘 x

  • This has made me feel a bit better. I always worried about endo before I even thought I had symptoms :( it just feels like my worst nightmare. Congrats on the pregnancy I hope everything goes perfectly well for you xxx

  • It's certainly not ideal, I absolutely completely know how you are feeling, I was diagnosed at 25 after years of pain. I instantly imagined the worst - I've just joined this site as I am looking for advise on hysterectomy after birth as I know that it will be needed and my appointment isn't u til end of September. I was in agony after my first child until I had surgery but...well worth it for my gorgeous little girl now 3 and bump! I've had fantastic support and pain relief from my surgeon since diagnosis and it's completely different for everyone. there is so many things that can be done. I just wanted to re-assure you that if it was fertility and babies you were worried about try not to - it may affect some women but It certainly hasn't affected my fertility at all 😊. Sending hugs and happy thoughts! x

  • I have regular periods on my side *touch wood*. So fingers crossed so far it hasn't affected me In that way. It's just my biggest fear to not be able to have babies its all I've ever wanted :( thank you very much for your advice it has made me feel a bit more relaxed. My appointment isn't until end of September too. Fingers crossed it goes quickly for both of us xxx

  • Hi

    Don't worry too much I've had the exact same worries. I'm 24 this month and I have severe endo, I've had my first lap to confirm the extent. I was told that I have a healthy womb/ovaries and tubes. And that after my next surgery I will be able to have children. Which like you also is all I've ever wanted. I was concerned because it's in one of my ovaries. There were things I hadn't thought about before. Like if I can't conceive naturally there is IVF or if I can't carry. My eggs can be frozen and then I can use a surrogate. I know that's not the ideal situation but it's an option. I also suffer from depression but I know I just have to be positive about this. I also find talking to a phycologist helps. If you've any questions feel free to ask X

  • Thank you for your message. I know all is not lost, I'm just having a really hard time in keeping hope. I'm struggling to sleep which is affecting my daily life especially work. I just started a new job 3 months ago, so as much as they are being supportive with appointments etc, I don't think they'll have me off sick all the time :( I'm going to book an appointment with my doctor to discuss my moods because I don't think it's normal to have such lows. Xxx

  • I was under the impression that 'Endo' could not be diagnosed by an ultrasound.

    It may be worth having a routine investigative laparoscopy to confirm - or not - the diagnosis of Endo. But, I agree with comment above about checking for BSGE Clincs, first.

    If any removal of endo is going to be done during the laparoscopy, then it should be done by an accredited 'Specialist Endometriosis Gynaecologist' - general gynaes do not have the necessary expertise. Search the 'Endo Uk' website (link at the top of this page) for info on 'BSGE Clinics': what and where they are, how to get a referral, and why you should have been told about these. Also check the posts on here, by Lindle.

    Hope this helps.

  • I read the same regarding the diagnosis. I suppose maybe he's seen it around my ovaries when he was doing the ultrasound? *sigh* not much I can do until I see the consultant I suppose. Luckily I'm very close to London so there are a number of centres close to me to access if I need surgery. Thanks for your response X

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