Hi Ladies,

I'm looking for anyone in their 20's with endo, I've found it extremely difficult living with something so life changing from such a young age. I'm only 20 and was diagnosed a year ago looking for anyone in the same boat who wants to chat to someone like them. I know we are all in the same boat I'm just finding being so young makes the prospect of being like this for the rest of my life incredibly daunting! xxx

If anyone wants to PM me! I'm happy to chat !! No one should have to be alone!

Last edited by

25 Replies

  • Hi I am only 22 so feel exactly the same as you. I was diagnosed when I was 21 after a year of being in pain. I have always wanted to have a successful career and the possibility of children but I am finding it hard to do this with endo. It's so frustrating and I find it hard to come to terms with. I luckily have a supportive family and partner who keep me going. Most of my friends don't understand, they think it's just normal period pains. Hope that helps, pm me if you need any other help!

  • Hi there, I was diagnosed when I was 19. Its an awful diease, I have tried a number of different things an have went through surgey a few time. How are keeping with the diease, have u been through surgery or anything? If you want to chat more privately sure message mr. We r both young an will understand one another. X

  • Hello :) I'm 23 and last year got a diagnosis of stage 3-4 endo and interstitial cystitis. I have days where I just want to rage about this disease and I am so resentful. I have had a week and a day off work so far this month and I really can't afford to but I can't imagine feeling like this for the rest of my life - the thought of that terrifies me! I see a counsellor and that helps a lot. :) x

  • Hi, I'm 19 and have recently been diagnosed. I am a rare case where I managed to get diagnosed very quickly (3 months since first onset of very painful cramps!) But it still doesnt make it any easier! Hopefully we can support each other xx

  • Hi there

    I'm 18 and was diagnosed at 16. I've been trying to get someone to talk to also but no one replied to my posts :( I dont know if any of you feel the same, but I think getting diagnosed young is worse than waiting for ages. I get myself extremely depressed at the thought of me being infertile (being tested in a few months) and knowing early on whilst trying to get your education finished ready for uni and a job is proving difficult.

    I hope all of you girls are as pain free as possible today. I'm guessing most of you would be willing but I'd say that I'm here if any of you need support, like a virtual hug :)

    We could all set up a time to all come on and message each other maybe once a week. Up to you guys.

    Leya xxx

  • Would love a friend who is going thou the same thing as me and would love to chat x

  • Me too!! I'd love to meet up with people too as it makes me feel isolated as I'm at home all the time. I can't find anyone who lives near me though :( I think its easier texting than messaging through this all the time, maybe some of us who are willing could pm each other with our numbers :) xx

  • Hey, I'm in a very similar situation except I'm at uni now and working. Would be great to chat x

  • Cool!! Shall I pm you? I could send you my number so its easier than messaging on here, up to you :) xx

  • Sure PM me :) will be much easier xx

  • I'm 21 and I have endometriosis, I was diagnosed when I was 18 and I'm still kind of struggling with dealing with it. I would love to talk to someone else who has it, as sometimes it can feel so isolating xx

  • Hello, I know you asked for people around 20 but i'm 17 and have just been diagnosed with stage 4 Endo. although ive been in pain for years, as long as I can remember! I want to have the career and family and have recently been told if I want a family I need IVF as it probably will not happen naturally. Just like LeyaC I do think being diagnosed young is worse although everybody have struggles when being diagnosed and living with this. I will make sure I get my career and I will try my hardest for a family later on too. We can't let this beat us :) I do feel very alone at times, it's very hard for other people to understand. I dont think boys understand at all even though im very lucky to have a boyfriend who tries to. If anybody would like to try and arrange something to support each other i would love to be involved!

    Wish everybody the best and lots of good luck xx

  • I'm here for you if you like. I'll try and set something up for those of you who want it. Pm me if you'd like my number, get messages sooner than when its on here :) xxx

  • I'm 22 and only last year was diagnosed but have suffered the symptoms since I was 18/19. The issue with finding out young is I found in m situation there scared to operate as were still young and they'd rather keep you on things your body is used to it. As I want family desperately I've been told to just stick on the pill and take for 3/4 months at a time without a break to hopefully ease the pain. Will soon find out how this goes in the next few months. If you wan to chat feel free to message me

  • Hey I know how it feels when they say they won't operate I'm having lots of problems and trying to get through uni and struggling at the moment even when it comes to getting out of bed on my days off let alone doing assignments and revision!

  • I'm 23, have been in agony with pains since I was 16, waiting on a diagnostic laperoscopy eventually! I missed my a-level exams with being in hospital, had to get predicted grades, then after a year had to drop out of uni with having so much time off, so that was the end of looking for a career, I luckily managed to have a baby girl in June last year even thou they had told me there was a very slim chance of having children naturally! At the min in I'm so much pain and struggle to look after my daughter, I have no social life now, and do feel very lonely, although I do have amazing friends and family but they just don't understand how much pain and how depressed u feel! So would be lovely to have girls of similar age with similar experiences to talk too xx

  • I wonder where everyone is from? I'm from West Midlands x

  • I'm from west midlands too!! Where are you from?? :) xx

  • I'm from Stafford xx

  • Ok so I feel old here - 27 :) but I've had my symptoms since 2008 and still haven't been officially diagnosed. I also feel low and my social life is quite often just non-existent.

    And I'm from Oxfordshire x

  • I really feel for all you ladies suffering so young. I'm 29, first diagnosed when I was 25 after years of pain, now just recovering from my second laparoscopy & diathermy. I wondered if it has changed your plans or expectations of having a family - ie do you think you will start trying for a baby sooner than you would normally consider it? My doctor has advised me not to wait until I'm 32 (which is when I was originally thinking) so instead may start trying in the next few months. It's such an unfair thing to feel that your open choice has been restricted somehow by this disease... Sending love to you from London x

  • I am no longer in my twenties (33) but was diagnosed when I was 21. And just want to say that I have found that embracing the good days (even if they are few) rather than worrying about the bad days make the bad days slightly easier to deal with and also trying not to worry about what hasn't happened yet really helps after all it could be that you could have positive experiences as much as negative ones. I am just sharing as if someone had told me these two key bits of advice in my early twenties i would not have wasted years worrying on top of dealing with this disease. Don't let this illness define your future happiness is obtainable. Stay strong lovely ladies x

  • Hi, this is my first post on here! I`m 23, with stage 1 aggressive Endo. I have had symptoms since I was 13, and was eventually diagnosed (after 4 general laps) at age of 20. I was lucky, as I was diagnosed and treated under private med.

    I am now in my second relapse, and in daily pain. I am going through the NHS for the first time since being diagnosed, and am struggling with my lack of treatment. I have yet to find a GP who understands Endo, and keep being asked what I want for medication. I currently have no indication of when my surgery will be, but I have been told that I must have another lap as soon as possible.

    I have been lucky, as I now have an employer who is working with me and allowing me to work from home. And my family are really helping.

    I've faced a lot of the challenges from living with Endo, like getting through A-levels, a degree, starting a career & raising two boisterous stepdaughters. And am more than happy to offer support to any of you. Talking is the only thing that genuinely helps.

  • Hi everyone, sorry I haven't replied sooner been busy with university work! Its so nice to know I'm not alone. I'm in the North East but in my last term of uni in Nottingham! I'd love to chat to anyone who wants to talk! Its so frustrating fighting this battle on my own! xxxx

  • Hi Hun, I am 22 and in just finishing my first year at uni.. Im finding it very hard as well I was officially diagnosed at 18 but have known I've had since about 16 as it's hereditary.. It would be great to chat with someone in a similar situation :) xxx

You may also like...