After 11 years of battling for answers, I finally got diagnosed with deep infiltrating endometriosis. The relief of finally understanding my body was also met with the undeniable grief of knowing that this is a chronic condition that I have to endure for the rest of my life.

There is no cure. Women's health is complex and for this reason, very little is know about conditions such as endometriosis.

First hand I can tell you that it's painful. I won't shy away from telling you that it's painful periods, painful intercourse, painful bowel movements, abdominal pain, bloat, nerve pain, backache, brain fog, headaches, constant fatigue.

Alongside the physical characteristics of this disease, it comes with a very heavy mental load too. The anxiety, the depression, the worry. Worry about missing out on life, worry about body image, worry about the looming pain and what my future will look like, worry about whether my body is actually capable of bringing another human being into this world.

Knowledge and understanding of this disease is so overwhelmingly low. This is not just a reproductive disease. It's a whole body disease and it is debilitating. Not just that, but it is estimated that 1 in 10 experience it.

It takes on average ~8 years to diagnose down to not only this lack of knowledge, but also long waiting lists for a surgery (which is currently the only means of official diagnosis). Both of these need to be changed.

After 11 years of trusting that it's not 'just ibs' or 'all in my head' I finally am able to move forward with my journey. I urge women to trust In themselves and know that any abdominal pain that is unusual or unbearable is not normal and it should be taken seriously.

So here is my (unapologetic) story:

Since I was ~16 years old I often had unexplained abdominal pain. I went to the GP a handful of times but always seemed to have the same tests done and told it was probably just ibs. Fast forward to ~22 years old and I switched from the pill to the copper coil. This is where everything changed. I noticed my pain was often cyclical, and it was extremely painful. I couldn't stand during a flare up, I had regular unexplained stabbing abdominal pains, intercourse was painful and sometimes led to bleeding, regular rectal bleeding and pain so bad during bowel movements it would stop me in my tracks, chronic fatigue, migraines and backaches. I went to the GP to explain this and the blame was now pointed at the coil. It was checked multiple times and I was always told 'everything looks fine'. I heard this phrase for many years alongside 'its probably just ibs' until ~26 years old.

After being dismissed one time too many, In April 2021 I landed in hospital with severe pelvic inflammatory disease. I had a handful of scans done that were also able to locate a chocolate cyst in my left ovary. Due to this, I was labelled as having 'suspected' endometriosis.

Following on from this I had an implant placed which, to cut a long story short, caused my mental health to plummet. On removal I went back to the GP eager to know what could be done to help ease symptoms and the options, alongside a variety of painkillers, were hormones or surgery. Unfortunately, my body doesn't respond well to hormones. Not only that, but hormones, in my opinion, only hide the symptoms as opposed to offer a lasting solution. So with that I opted for the surgery. Although it still has cons attached, it appears to be the better option for my own personal circumstances. All of this said - everyone is different and choices of treatment differ, rightly so, from person to person.

After a year long waiting list, I finally had my gynecology appointment where I signed all the surgery documents to then be met with another year and a half wait. Fortunately having opted into involvement with research, I was able to have it done much sooner. After an MRI scan that came back clear in May 2023, it was suspected I likely had superficial endometriosis which, to my knowledge is less complex to remove, and it was ideal for the research I was involved in (ESPriT 2).

I was able to undergo surgery in July 2023 where I was told, if the surgery was successful, to expect 3 incisions when I woke up so when I woke to only find 2 I felt so disheartened thinking they didn't find anything and it was back to square one .However, it was much more than that.

They found not only superficial endometriosis, but also deep infiltrating endometriosis. They found it in my port of Douglas, on my bladder, worrying close to my right ureter, and there were so many adhesions on the left side of my abdomen that my left ovary couldn't be seen clearly due to it being stuck to much of the surrounding tissue including my bowel. It was enough for them to decide not to remove any at this stage due to complexity of the surgery. Instead, I am currently awaiting a second surgery in which I need stent's placed prior to surgery for precaution and 4 surgeons (two gynacologists, a colorectal surgeon and a urologist) due to the organs involved with my endometriosis.

I would be lying if I told you I wasn't scared. It's a complex surgery with risks attached and there are questions I am desperate to know the answers to but won't know until I've woken up. With that said, the Gynacology team at the Royal Infirmary have been nothing short of incredible. I finally feel heard, supported and cared for and I would do anything to show my gratitude to them.

I have a long road ahead, but I have hopes that the future isn't so daunting for the unfortunate 1 in 10 young women experiencing this disease. I have openly agreed to be part of EXPPECT's research wherever possible to try and find not only a faster, less invasive and more efficient means of diagnosis but also to find a cure.

The EXPPECT team are a group of incredible individuals on a journey to research endometriosis and pelvic pain to ensure women can access evidence-based, high quality treatment. Their research is charity based and this is why I have chosen to fundraise for them by taking part in the Edinburgh half marathon.

Please, if you can, donate to my fundraiser and help fund this potentially life-changing research for the 1 in 10 women that have to experience this horrible disease.

Thank you ♥️🎗️