Help and advice

Hi everyone, I am 16 and I am being tested for endometriosis. I have had ongoing pain for 3 years now and the hospital are not sure what is wrong, every test and scan I have had have all come back clear and I have now been booked in for a gynaecological laparoscopy in November. I was just wondering if you are willing to share, what are some of your stories, and have any of you had the operation and what happened to you after. Thankyou for reading this.


5 Replies

  • Hey, it makes me sad and angry to see someone as young as yourself have to deal with quite a big thing. It's quite a complex disease and varys person to person. I thought I was young I'm only 22 but think Iv always had endo since I was about 15-16! I'm actually having a laparoscopy tomorrow for treatment rather than investigative. It's my first so not 100% sure what to expect, but Iv been prewarned that I may need a larger incision and not get away with key hole!! I will let you know what to expect if you like. I'm then going on an induced menopause which will be fun lol. I would advise you to do a lot of research it will help prepare you and sometimes you will find if your not talking to the right doctors as not many have heard or know about endo!! So to get the right doctor you need to be asking the right questions!! It's easy to get caught up with all the negatives of endo, just keep open minded and positive! Obviously your entitled to a crap day just don't get stuck there, It's easily done but gets you no where!! So try not to get caught up in it all too much sweetie. Wishing you all the best xx

  • Hi Lamartin92, thankyou for replying, you may not think it but you have really helped. I hope your operation went ok today and that you are not in too much pain, I hope the results you get are what you want. I am going to write down all the questions I have so I can ask them when I'm next in hospital, my operation is booked for the middle of November but they said may be earlier if they get a cancelation as they said the earlier the operation the better, I just hope they find something so I can have a diagnosis and some closure. Thankyou for helping me and sharing your story with me x

  • I agree with lamartin. I'm 24 but have suffered for years, I'm sorry it's got you too. Write down a list of all the things you want to say, even if it's all symptoms. The surgery is fine and after you recover you'll feel so much better. Start on your hormone treatment and you could be a lucky one and not have to worry again :) just be positive. Xxx

  • Hey I thought I would update you and let you know how I got on, I can assure you, you have nothing to worry with regards the operation, all I remember is having my canula inserted and next thing I know I'm waking up in recovery!! I was extremely nervous but have no idea why lol. Although I will pre warn you I was in a it of pain and still am from trapped gas in my shoulders and rub cage!! And just feeling a little tender and fragile, but I was poked around a lot and had quite a lot of treatment done. Yours will be investigative and hopefully less invasive as they will probably have caught it at very early stage shops fully and be able to control it with hormones. Unfortunately my surgery didn't go quite to plan and I'm abit more of a mess inside than first thought and not a lot could be done without causing more damage and having to remove a lot of my lady bits. I urge you to out your foot down with doctors and to be firm and strong and not let then dismiss you, I was always told it was to do with my weight and IBS and was just shrugged off and told I just have a low pain threshold. When looking back at scans in 2010 I had early signs of endo that could of been treated with hormones but I was ignored and pushed aside. Obviously when you have professionals telling you nothing's wrong your going to believe them. But I always knew something wasn't right as you know your body best!! I hope you get taken seriously and they help and support you a lot more than other women get. Because now I just have to hope for the best once Iv finished my induced menopause and get trying for a family sooner rather than later as I will need further treatment to remove bits and bobs. I don't mean to or want to scare you, I just don't want you to look back in a few years time and be in a similar situation to myself and many othe ladie on here find themselves in. So do lots of research and make sure you know your options and what not. I'm still feeling groggy after my op and tender but liquid morphing and tramadol work wonders!! My sleeping patterns all over the place at the moment and find I have lots of baps rather than a proper sleep, think that may be down to my hormone injection though lol! I wish you all the best sweetie!! Be strong and don't let them mess you around, make sure you keep your mum in the loop and she knows a lot about it too, as you'll find she'll ask a lot of questions for you that you wouldn't even think of at your age!! My mum was a godsend and my rock this past year!! You'll find it'll bring you closer than ever. You'll need all the support and guidance you can get :) xx

  • Hi, thankyou so much do sharing your experience with me, it has really helped me. My dad comes with me to my appointments but he doesn't let them off lightly, they have said it was IBS with me also but I have always told them it wasn't and that I know my body and that they were wrong but they insisted they wernt. I was really happy when they said I could have the operation as I have asked all along if they would just cut me open and have a proper look inside and they always refused, this has been going on for 3 years now and I don't get upset about it anymore it's more anger and frustration because they don't seem to care about what it is doing to me, I had to take months off school at a time and I am now having to miss college. I just want to get to the bottom of it now so that they can treat whatever it is. I'm sorry your operation didn't go as planned and I hope they can sort you soon so that you can start your family, I wish you all the best, thankyou for all your help and advice, it has helped me so much xxx

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