New diagnosis - How do I cope?

[An_Exhausted_Pigeon]

Hi everyone,

Apologies if this is the wrong place, but I'm tired, scared and needing someone to talk to.

Today I was diagnosed with Endometriosis which is affecting my bowel. The consultant has also requested a further ultrasound to check my kidneys following an MRI. I'm booked in to see the consultant this month, but honestly I'm just so scared.

I've never really had any health problems before, except for an anxiety condition (which as you can imagine is playing havoc right now).

I just wanted to ask if any of you have had a similar diagnosis? And I also wanted to ask if you have any general advice for coping with this unknown, or the potential treatments?

Thank you so much all, anything, no matter how small, would mean the world.

It just helps to know that I'm not alone 💛

[Sunset-lady]

It's such a shock when you get diagnosed; you feel like you're in free fall. I had very few health issues in my 20s or 30s (except painful periods) so finding out at 50 that I had stage 4 endometriosis was life changing. It makes you a bit depressed to start with because you feel so alone but you're not. 10% of women get this. It's HUGE. It's underfunded and under-researched which is disgusting, but more and more women are getting diagnosed. I don't know how old you are but please don't worry. Mine is bowel related too - all fused together. You have lots of options and it's great that you are having an MRI scan. You need to be under an endometriosis specialist. Try not to worry - stress only makes this condition worse. Take your time to read about it. Make changes to your diet which have a massive impact on this disease. Prioritise sleep and if you need to, get occupational health in at work. Try to regrade it I'm your head that now you know - it's empowering. I no longer EVER feel guilty about saying no to things; this disease has strengthened my personal boundaries like nothing else. I prioritise me now. I look after myself and I'm much kinder to myself. There are some amazing women with incredible knowledge on here who have massively helped me. Tale your time to get your head around it. Make a plan and make some changes to your life. I believe women who have this disease are incredibly resilient, empathic and intuitive; we feel everything. This can work against us at first, but once we take stock and do our research we are immensely strong. Look after yourself. Think of it as the start of something new not the end xxx

[An_Exhausted_Pigeon in reply to Sunset-lady]

Thank you so much for your reply, I appreciate it so much 💛

I'm 25, and have been struggling for years but I just thought it was normal. My pain was so bad at one point that I was rushed to hospital as they thought I had an ectopic pregnancy, burst appendix or kidney stones. After an ultrasound, they said that my one kidney looked big and put it down to suspected stones, sending me home with not even pain meds. This was back in 2020, and it just makes me sad to think that I could've begun treatment and healing back then, but instead I've had to wait until its become unbearable 😔

I'm married to my best friend too, and we're looking to start a family in a few years when I finish my PhD. So obviously my brain thinks the worst, and fertility is a big concern 💔

Im so sorry for the long rant, it just feels so helpful to hear from women who have walked in the same shoes. It makes me feel like I'm not alone, so thank you xx

[Cam66926]

Hello,

I am having an ultrasound on Monday for the same diagnosis. I don’t have any advice for you, but I wanted to share about a documentary called Endo What? I have not seen it yet because I am waiting for confirmation I did watch the trailer and it looks really interesting

google.com/gasearch?q=endo%...