I'm 1 in 10: My endometriosis story update

Hello all,

It's been over 2 years since I've written I'm 1 in 10: My endometriosis story (if you are interested in reading my story you can click the link above, please note that this current post will be an update on the situation written previously).

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I thought it was finally time for a little (or maybe not so little) update.

As many of you know I've been dealing with Endometriosis chronically since 2019, I was officially diagnosed in 2020 via laproscopic surgery (also known as keyhole surgery). Unfortunately my pain didn't go away after surgery and it actually got worse between 2020 and 2022.

In 2022 I had my second excision surgery which went great and for a short while I was actually pain free.
Shortly after surgery I got pregnant with my daughter who was born healthy in December of 2023. After I gave birth the  pain started coming back slowly again, though it was bearable.

In December 2024 I went back to my specialist to discuss further plans as my pain had gotten worse and worse, I struggled with alot of bowel symptoms. They did an MRI which showed no deep endometriosis (deep endometriosis means endometriosis growing inside other organs/tissue/muscles) and I was referred back with the advice to just learn to live with it and try out the TENS (Transcutaneous Electrical Nerve Stimulation, a pain relief therapy that uses mild electric currents through electrodes placed on the skin).
My doctor told me that my endometriosis was probably back but not showing on an MRI (which is normal as endometriosis can 'hide' from imaging and can be hard to catch as it only shows deep endometriosis if anything at all) but due to my surgery history and the endometriosis repeatedly coming back they told me surgery would be more risky than helpful.
She also told me that my symptoms related to my bowels were not from endometriosis though and referred me back to my GP.

I went back home feeling defeated and lost, if it wasn't endometriosis then what is causing all my symptoms?

Back home I started  a whole new path of tests and trying new diets to rule out allergies, bowel diseases etc. During this time all my pain and symptoms only gotten worse and the tests all came back normal. I really couldn't handle the pain anymore and decided I needed to take steps, I decided to go for a second opinion abroad. The wait list was only 3 weeks so things went really fast. And on september 10th of this year I had my appointment.

During my appointment they did a detailed ultrasound, the ultrasound showed adhesions on my bowel and uterus (meaning my bowel and uterus are stuck together), it also showed an 8mm endometriosis nodule on my bowel. The professor who did the ultrasound told me he could say with a 100% that it was endometriosis on my bowel. Hearing that almost brought me to tears, I wasn't crazy, I was right all along and finally someone believed me and actually confirmed it.

After my ultrasound I saw the endometriosis specialist and he talked me through treatment options, they told me they are able to perform surgery to remove the endometriosis tho it's a complex and risky surgery due to the amount of adhesive tissue seen on the ultrasound.
Sadly this doctor is private and isn't covered by insurance and the surgery alone will be around £20k.

When I got back I had alot to think about, how am I going to pay for private surgery? But leaving it like this and not doing surgery could damage my bowel, so do I really have a choice?

Recently I went back to my own specialist with the new information and requested a reconsideration on if they could perform this surgery here.

On dec 11th (next week) I hear if they consider doing the surgery.

I know this update is nothing but positive and I wish I could have told you all I was still pain free and my second excision surgery was a longterm success, but unfortunately it's not.

Sadly endometriosis is a chronic disease with still no cure or cause, it's unknown and not much research was done. I hope my update after the 11th will be more positive and I can tell you all they are scheduling my third surgery.

Thank you for reading and remember that heavy periods, intense pain during and outside of your period is not normal and shouldn't be normalized. If you are currently in a similar situation or are unsure whether or not you have endometriosis, don't give up, fight for your wellbeing, you deserve to be heard, understood and taken seriously.

I'm very passionate about endometriosis and I am always open to talk about this with anyone who wants to learn about endometriosis or wants to talk about having this illness, you can find me in the forums or in the rooms for a chat on endometriosis ❤️