Just diagnosed

Hello there. I'm just looking for a bit of support, and this looks like a pretty good place to find it!

I was diagnosed with Stage 3 Endometriosis a few days ago. It did come as a surprise, even though I've been to the doctor with pain for the past 10 years, I was still expecting to be told I was making a fuss for nothing, and it was probably just that I had a low pain threshold.

Being diagnosed has in one way been a relief, knowing that I wasn't imagining the pains I had and now knowing how to get some medical help. On the other hand I'm pretty upset. Foolishly I hadn't prepared myself for this outcome, and so it has been quite shocking reading about all the implications.

I'm 29 and really really hoping to start a family.

I've just been fitted with a mirena coil, which I'm hoping will help the pain. I haven't had my post op consultation yet, so I'm not sure what they are going to say. I'm scared and sad that this has taken so long to find out about. If I'd known earlier I would probably have tried to start a family younger.

Has anyone used diet to help? I'm going to try and follow a strict diet to help with the pain, and do as much as I can to help my fertility.

Any advice would be really gratefully received. It all feels very new and daunting right now.

5 Replies

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  • Your story sounds familiar. 17 years of pain and finally diagnosed with stage 3 in Aug last year. Like you I found it a relief. I wasn't going mad after all! Do not give up hope of a baby. I also have pcos and manged to fall pregnant after 3 years of trying naturally. I'd live a second but my daughter will be 6 soon and have never fallen pregnant in between. I am grateful for her but my life feels incomplete. I am older than you so that doesn't help. Never tried the diet but heard its strict. If it works let me know!! Wishing you all the very best. Xxx

  • I do the diet - not for fertility (I'm a bit old for that), but to reduce the pain and to be generally healthy.

    It's hard to do, but I've really benefitted, and now that I've changed the way I eat I don't find it particularly restrictive - I can usually find something to enjoy. I've also found it's easy to manage my weight by eating this way.

    There's a lot of conflicting advice on the internet, so I'd focus on the basics (no to caffeine, red meat, alcohol, sugar, wheat and dairy), and not try to make it more complicated (people also give advice about avoiding even more specific foods). I gave things up one at a time, so that I could adapt to the new diet gradually, and I do cheat from time to time without horrible consequences.

    Good luck, both with the diet and more importantly with fertility. Wishing you the best.

  • Dear Edibedi

    Endometriosis is a horrible, scary disease. If you've been reading up on it, you'll undoubtedly be terrified and floundering and all of those What Ifs will be swirling around in your brain and making you feel tons worse. That's a horrible place to be in, but totally understandable. Not sure that this will help, but sending hugs anyway.

    On the other hand though...endometriosis is also a complete conundrum. Whatever you're told at your initial consultation, your actual experience will very probably turn out to be different. Maybe only in subtle ways, but maybe the complete opposite of what you expect. It has a rule book - pain, heavy bleeding, infertility all feature heavily - but it doesn't apply those rules in a blanket manner. People who have been doubled over for years will find that they 'only' have one tiny spot of endometriosis. People with relatively few symptoms find that they are riddled with the stuff.

    When I was diagnosed in 1992, I was told that if I didn't get pregnant in the next 6 months, it would never happen. I was devastated, as you are now. And I didn't get pregnant in those 6 months, and I blamed the endo, and so did everybody else, and that, apparently, was it.

    Five years later, I moved in with my husband, and I was pregnant, extremely unexpectedly, within a month. Unfortunately and in an exquisitely bad twist of fate, I had a combination of other conditions totally unrelated to the endo which caused early miscarriage, but I fell pregnant eighteen times before we gave up. Despite grade 4 endo, and the loss of one ovary, I was super-fertile. So that first marriage, all those years of guilt...not my 'fault' at all, as it turned out...

    What I'm trying to say is that although an endometriosis diagnosis is devastating, it doesn't necessarily mean the end of the world. In my experience, you need a hell of a lot of positive mental attitude, at a time when you often don't want to get out of bed, so I'm not trying to say that it'll be easy, because it probably won't. But don't give up, and don't assume the worst. And don't let anybody tell you that anything is impossible.

    But in the meantime, of course - lots of chocolate ;)

    Good luck love, and if you want to chat, feel free to message me

    C xxx

  • Hi, your story is familiar to me as well. It seems like most of us suffer in pain for a long time before we finally get a diagnosis, and the diagnosis is not nice. Like you said, I had the same feelings that it is a relief to finally know what is wrong, but not so good when you start finding out what having endo really means. From years of experience, and having just had my 3rd surgery to remove it, my best advice is, start trying for a family Now, if you really want a chance, as it could take years to realise that dream, when you are fighting endo too, and because the worst thing endo can take from you is your fertility.

    Also it has been shown that to follow a gluten free diet, and an anti-inflammatory diet really can help with reducing pain and inflammation. Have a look at the Mediterranean diet, may be a good one to follow. Also avoiding soy and diary products has been advised in many articles and books. Wishing you success and best of luck :-)

  • Thank-you all so much for your comments and advice. It really means so much to hear all of your experiences. I'm sorry it's such a hard path for everyone.

    I've made a start on the diet, and just waiting for my appointment, which isn't for 2 months! I'm going to try and stay positive and be pro-active.

    My thought with everyone else who suffers from endo.

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