My story

Hello everyone,

I have just been diagnosed with having endometriosis and wanted some advise...

I'm 19 and after years of discomfort they found a 'large mass' in my 'pelvic area' which they found was a very large cyst on my left ovary, they wanted to get in out straight away so booked me in for a laporotomy on Monday, when they got in they found very bad endrometriosis attached to all my organs and all in my pelvis, after my surgeon trying to scrape as much as he could out due to bleeding so much there wasn't anymore he could do. So now being diagnosed with endo I have looked up what it is and how it may affect my life and many of the symptoms I already have... I would just like any advise or tips anyone may have, anything useful I can use just to make it a little easier (easier said than done i know) I really want to know how people have found their fertility issues as my doctor says he's 80% sure that I will have to have IVF. Also I have been looking at a specialised diet that looks VERY hard but with promising results, it consists of no diary products, no sugar, no red meat, no wheat or barley, and little alcohol and a high diet in fibre and fresh organic fruit and veg... Its a big change and drastic but if its a life changer then surely its worth it? Let me know your thoughts

Thanks :)

4 Replies

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  • Hi - please can you click on my name and read my posts. If you were dealt with by a general gynae at your local hospital you need to be referred to a specailist centre for your endo and yes, all those things can have dramatic effects if you can stick to it. But you still need to see a top surgeon as they are more likely to be able to get most of your endo out. x

  • Just wanted to let you know that I was diagnosed with endo at 17 at 18 I was offered a hysterectomy and told I had a 2% chance of being able to conceive and even less of actually managing to carry a child

    I'm now 27 and have 2 gorgeous children - both conceived naturally although both premature

    My advice would be find a good surgeon! I have been under 6 different ones and all bar one were hopeless! The current one is the one who did my miracle operations so I could conceive

    I tried all the diets and gave up everything! Hated it and hated it even more when it didn't really work! If you find somethin that works that's fab to maintain your health but generally I would say find a surgeon u trust and who will do their best for you

    Basically don't give up hope!

  • Hi I'm 19 too and have had stage 4 endometriosis since I was 17.

    I have had many appointments when they have told me that if I don't have a family soonish then I'm likely to have difficulties but no doctor or gynaecologist can tell you 100% that you cant have children! If I'm honest thought of not having any petrifies me but myself and you are so young to be thinking of things like that.

    To help with pain they often offer you a form of contraception as it's supposed to help with pain and slow down the growth. I have a tried a number of them and got lots of the side effects too! The pill was horrendous for me! I'm now on the depo injection which hasn't helped the pain as much as I thought but it's only my first lot so maybe takes a few tries to work.

    The endometriosis diet has really helped me especially cutting out red meat. Red meat is an inflammatory and used to make my pain unbearable! It's very very hard to stick to especially when I was a red meat kind of girl who loved a steak!! It's surprising how quickly you get used to not eating other foods, it's quite expensive because all free from foods are ridiculous prices! However, it's worth it if it works for you like it has me.

    I hope this helps you a bit :-) xx

  • The diet has worked wonders for my pain and energy and it has helped with bowel problems too. Sugar and wheat are the main things I need to avoid. I find exercise actually makes me feel better and increases my energy levels. I went to see a nutritionalist who recommended some supplements which helped too. Also if you can join a local support group you may find that useful in order to ask questions or find out information. As other people have said, make sure you are seen at a specialist centre. It can sometimes be a real shock to find out and therefore counselling can be a good way to talk things through xx

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