Living With Endo - Grace Gray

Meet Grace Gray, a London based endo warrior who advocates for herself and others in the endo community through her social media accounts. Grace’s journey to diagnosis has been long and arduous. In this piece she shares the life-altering consequences that can come with waiting so long for a diagnosis. Plus, the ways she pushes through her condition, still living life to the fullest.  

My journey to a diagnosis was a very long one. My symptoms started over 14 years ago when I was 20 years old and manifested as gastro issues and I was told that I had IBS after a long series of tests.

After many tests with my gastro endoscopy showed gastritis, which is inflammation of the lining of my stomach.

I had more tests that came back negative and the root cause was never found. After many more tests my gastro specialist told me that “some people are just like this” and there’s nothing more he can do for me. At this point I felt broken and like I had no one else to turn to. I had many fruitless appointments at my GP where I got turned away and made to feel like this was from my CPTSD rather than a genuine condition and that it was all in my head.

At that point I decided to go on my own journey trying to discover what was happening in my body. I tried many diets, spiritual practices, therapies until I met a functional medicine practitioner who gave me an in-depth stool test and food intolerance test which showed up severe intolerances to yeast, wheat, eggs and all animal milk. My results showed a high intolerance to gluten in my test, which indicates that the body isn’t coping so well with gluten intake. She also informed me that I had barely any mucus in my gut and my bacteria was completely off, with me having too much of one and too little of other bacteria. 

She put me on a strict protocol of supplements and foods to avoid and for the first time in my life I felt okay again not perfect but okay and that was good enough for me. I felt the pain in my stomach reside for the first time in eight years. 

Unfortunately this didn’t last long as the idea behind it was to eventually add these food groups back into my diet but as soon as I did I noticed my health start to fail again so continue to keep them out of my diet. This led me to believe that this was more than just my gut health and there was something else going on in my body. Over the last seven years I’ve noticed my body weaken, finding it harder to walk for a long time, pains down the backs of my legs, finding breathing hard and feeling completely exhausted on a regular basis.

After many MRIs x-rays and tests that yielded no results, I was left exactly where I was nearly 10 years before. After finding community online with chronic illness spaces I started to notice that I was suffering with similar symptoms as women with endometriosis. I had never previously considered endometriosis due to not particularly having bad periods or even heavy ones, though they were longer than average. However, it was from here that I began to see my health go rapidly downhill. I was experiencing pain in my left side, which cause me to collapse, and this continually became worse in my 30s. Every 2 to 3 months this pain would cause me to convulse, vomit and urinate. When I tried to seek help for this I would be refused an ambulance, or if I did make it to hospital I would be turned away. One hospital visit even saw me turned away with a leaflet on how to wash my Vulva after being told that it’s just vaginal dryness that I’m dealing with, after I sobbed during physical examination due to pain.

Finally, I decided to move GPs after lengthy discussions with other women who have endometriosis. I was encouraged to ask for examination to try and find any evidence. They then found an endometrioma cyst on my left ovary, and over the course of many examinations it was discovered that the endometriosis caused an occlusion in my uterus which in turn caused hydronephrosis in my left kidney. Also, an endometrioma was discovered on my right ovary, had partly obliterated my pouch of Douglas, on my bowel up the sides of my abdominal wall and back causing inflammation and thickening in my uterus and nerve pain all over my body.

I am currently waiting to have renal reconstructive surgery, (shaving the endo off my bowel, removing both endometriomas from my ovaries, and removing endo from my nerves if there is any) after I have completed egg retrieval. I currently have a stent in my left kidney which was used as an attempt to save the last bit of kidney function, as my functioning went down to 20%- 25% and sadly has only gone up by 5% due to the damage over the years, of which it may never recover. I am finding it difficult to find anything that helps my symptoms due to the progression of the disease and I’m finding day-to-day life extremely hard and very isolating. 

I find having endometriosis and the late diagnosis and subsequent damage to my body very difficult to live with. I struggle with grief for the life I could’ve had and the life that I may never have. Most days I force myself to push through the pain knowing that getting outside,seeing friends and just doing something small but joyful, can make all of the difference to my day. But this has become increasingly hard to do with the progression of the illness and damage to my vital organs. 

I believe that all GPs should be well-versed and educated on endometriosis symptoms. This applies to not just the obvious ones such as heavy periods as many women struggle with gut health and urinary problems as their major symptoms, especially women who have been put on the pill from a young age. If my GP had recognised my symptoms sooner my prognosis now and my entire life would be completely different.

Young women need to be listened to, our pain needs to be taken seriously. Any women suffering with pain for over three months should automatically be screened for endometriosis. The condition is so desperately common and so desperately underdiagnosed and can cause catastrophic damage when left untreated.

I do believe that people are becoming more well-versed with endometriosis. I have noticed that when I mention it a lot more people know what I’m talking about. This means I don’t have to explain myself because they already know how awful it is and what a difficult thing it would be to live with it.

Endometriosis is not only painful, but also deeply isolating and harrowing to live with. No two days are the same. It takes an incredible toll on your mental health to have to constantly advocate for yourself for years. 

My advice for people living with endometriosis is that you’re going to be in pain no matter what you do, no matter where you go. For this simple reason, I would encourage you to try and enjoy life as much as physically possible whenever possible and to not isolate yourself. You should seek joy where you can and never give up hope.