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Undiagnosed and struggling. Help!

Hi all, I am pleased to have found a community who support one another and truly understands this debilitating condition. I myself am just getting the ball rolling with my diagnosis. I had an ultra sound confirming nothing scary going on in my pelvis and am now to be referred to gynecology for further tests.

I have all of the classic endo symptoms and have lived with them for years unknowingly and then lately it's become more noticeable (i.e the pains and cramps down my legs). My periods are horrendous and sometimes I could be sick from the cramping - I am kind of use to this however as a mum I am really struggling with the fatigue and my mental health.

I am just wondering how long did it take to be diagnosed? I understand laparoscopy is the preferred method to confirm it. With the way surgery is at the moment I can see it's going to take longer than normal. I am also wondering how you all cope with the fatigue and mental fog? I am struggling each cycle with lack of motivation and then binge eating which directly affects my moods. I think I already have depression and anxiety but I am in a bit of a pit with it and just looking for a light or rough timeline to see when I may have a confirmation as to what's going on. Holding on in there - like many others waiting to find out!

Thanks ladies 😊

  1. Hi I am sorry you’re struggling so much. Yes a laparoscopy is, currently, the only way to properly diagnose the disease, since endometriosis adhesions can be located at deeper levels of the body or hide behind organs.

    It took me over ten years of seeing doctors to get my diagnosis. But hopefully it won’t take as long for you, since you are already on your way. I’d say that the best thing to do is to try to find an endometriosis specialist near you. This can be done via Nancy’s Nook on Facebook. There is a lot of data on that page, and up to date information on where to get help.

    In the meantime, you need to go easy on yourself. If you can, talk to your doctor about your emotional state, and how you’re feeling. Chronic pain can have an effect on our levels of stress. I constantly have to manage my mental health. In this sense, self-care is super important.

    With regards to chronic pain, I am including a couple of links with some good tips, written by our advocates.

    And this one deals specifically with brain fog.

    I suffer from both, and I found that what works for me, may not work for others. It’s all about finding our own coping mechanisms.

    I hope all of this helps. Please know this community is here to support you, so reach out to us if you need 😀 – Jessie (team member)

    1. We are so glad you found this community too . Please know, we are always here for you. We are so sorry to hear you are struggling. You are certainly not alone there. I can so relate. Especially before I received my official diagnosis. It is frustrating, scary, upsetting. Unfortunately, it took me years and a handful of doctors before one would do surgery to finally diagnose me. Jessie left some great articles to read and I definitely agree with checking out Nancy's Nook if you haven't yet. But just wanted to let you know you are not alone. Please reach out anytime you need. We are here for you, always. Truly hope you are able to find answers and relief soon <3 -Kimberli (Team Member)

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