Struggling with diagnosis

[KennyLambrini]

Hi everyone,

I'm 24 and I've suffered with severe mensuration pain since the age of 13. I very recently got diagnosed with Endometriosis after over 10+ of being ignored by healthcare professionals, being told that due to my mental health issues that I was simply "imagining" my pain and told to have a baby at the age of 21 would cure my problems. Although my diagnosis hasn't come as a shock, I am still in turmoil knowing that this is a condition that I will have for life.

Does anyone have any advice?

[Sunset-lady]

It is hard but try to flip it and think how lucky you are to have a diagnosis of a disease that you can learn to manage now. It's empowering knowing what it is, and you can move forward with confidence and make the right decisions fir your health based on this condition. Many of us don't have a diagnosis or only got one recently. I'm 50 and I found out in September. I wish I'd known earlier. I would have made very very different decisions for myself both in my career and personal life. Read as much as you can. Use exercise and nutrition to help you and stand up for yourself with regards to what is right for you. Yes, it's a life long condition but it doesn't kill us. It makes us incredibly resilient and compassionate. If you think about it like that it's not a curse, it's your superpower x

[Mxc908]

hello,

Sorry to hear that you’re struggling with the diagnosis. I got diagnosed in September and it was an absolute shock how extensive my endo was and how extensive the surgery turned out to be. I was really distressed by this and I couldn’t imagine feeling better about. BUT, after 3.5 months, I will say that a lot of the ruminating I was doing and distress I was feeling has reduced massively.

I kept talking about it to people and just accepted that I’d been dealt a rubbish hand that I was sad about, and slowly it started to feel better. I also went on holiday to distract myself (I know I’m lucky I’m in a position to do this!) and this helped me reset a bit. I was worried about wallowing and getting stuck post diagnosis but actually now looking back, I think I needed to do that for a few months to move on!

I hope this helps a little to know you’re not alone with the horrible feeling post diagnosis. I think we think it should be a relief to have answers but actually you can feel two things at the same time- relief and sadness!

Take care xx

[Cocoacupid]

hun this resonates with me I was told by people I imagined the pain like you was told because of mental health they wouldn’t take me seriously. After 27/28 years I now have a diagnosis and I actually feel relieved that I didn’t imagine things. Also they diagnosed my mental health wrong 😑 as I most probably have austism spectrum disorder and not a personality disorder which was such a bad thing to have but I knew deep down I wasn’t like the other people I had to do group therapy with. Hated group therapy as it made me worse than I was. To have a pd is like a life sentence in itself as it’s hard to lift off your records hopefully will get diagnosed next year as been on wait list nearly 2 years take care of yourself and it least now you can move on knowing you were right that something was wrong . It’s also along process to get diagnosed with endo but I don’t see why. I think women should be tested early on so they can treat before it gets to the end like stages xxx