Newly diagnosed; struggling to accept

[midwifewithendo]

Helloo all,

I finally received confirmation of my stage 4 endo diagnosis a few days ago. Initially I was relieved and looking forward to planned surgery, but I have been obsessively researching ever since.

As a midwife, I’m very familiar with scientific literature so nothing endo-related is off limits.

Ive noticed it’s taking a toll on my mental health. I cannot stop reading about the what ifs. I keep thinking “why me?”

One of my main anxieties is the impact on my fertility. Im not ready to have a child yet but the thought of having difficulties in the future, potentially as a result of waiting, is really getting me down.

Has anyone else felt this way? Does it get easier? Do you think about it every day?

[MrsMarlene]

I was diagnosed 2 years ago, a few months before my 40th birthday. It was a struggle to even get listened to and initially felt relieved to know what was wrong. Unfortunately there have been many disappointments from the fact my GP doesnt know alot about endo and adeno, my BSGE specialist was very unsympathic about long waiting lists and living with chronic pain - only willing to talk about NHS guidelines for treatment, at the beginning it was a struggle to control my painful flare ups which also effected my ability to walk, and at the time I was working for a very unsympathic boss who didn't understand my illness.

Today I am still experiencing daily pain and flare ups BUT am now employed by an amazing boss who lets me work from home as and when I need to, I have a GP who supports my decision not to have laparoscopic surgery and I am treating my endo/adeno with Serrapeptase which breaks down the adhesions and taking either Zapain on good days Tramadol on bad and daily CBD oil/gummies.

Having a pain management plan and the support I need from family and work has made a huge difference for me, but it has taken a while to get here. I still have days where I wish I had a different body and that I could wake up without pain again, but I make the most of my better days.

Once you find the best way to manage things for you I am sure you will start to feel better. This forum made a lot if difference for me too as there are alot of things you can learn from others. I hope it helps you too xx

Stay strong and look after yourself.