The reality of Endometriosis

I’ve been feeling pretty deflated if I’m honest. The last year or so has been a struggle from being dismissed and told by a supposed to be endo specialist my pains were “phantom pains” even though I knew the Endometriosis had grown back and this was confirmed by MRI scan in January this year. I’ve had to constantly fight to get the care and treatment that I have desperately needed. I was listed for surgery in January and just got a date through for August but before then I was told “ We aren’t meeting the waiting time guarantee so it’ll probably be ____”  which is devastating. This hasn’t just happened to me but a lot of other individuals out there. This is a severe breach of the waiting times and this shouldn’t be allowed to keep happening even though sadly it will. Someone needs to stand up and acknowledge that there are severe gaps and individuals are falling through the net. 

There are NICE Guidelines which are set out that individuals with suspected or confirmed endometriosis can be referred to a specialist centre. You instantly think “great I might actually be getting somewhere and get good care” but the reality is these services are underfunded, have limited resources and simply cannot cope. This is when the GP comes in and has to be the one to pick up the pieces. Some people unfortunately don’t have the support from their GP but I’m incredibly grateful to mine she has went above and beyond and does everything she possibly can to help. I’ve felt like I have had more support from her even though sadly the support from the hospital hasn’t been there.

There is talk of “early intervention” and having faster diagnosis times but there are women out there that by the time they are seen by gynaecology have a laparoscopy the Endometriosis is severe and in some cases require other input from specialties such as urology due to bladder or colorectal because of bowel involvement. In Edinburgh it’s estimated that 400 to 500 individuals will require complex interventions/treatments. The wait for these specialties and treatments are lengthy which means having to “struggle on.” 

It’s a really horrible position to be in. I understand that there’s cuts throughout our NHS but what is frustrating is not having support there when you need it. Endometriosis is hell. It is one of the most painful conditions and I wouldn’t wish it on my worst enemy. It’s not just a bad period. Endometriosis comes with different problems it’s endless medications, appointments and hospital visits. For some it means being unable to hold down a full time job or not being able to work at all, dealing with the side effects of medications, struggling with the fatigue that endometriosis brings with it. Also some are losing internal organs or their fertility. There are too many suffering to the point that it affects mental health and some ladies have sadly died due to suicide because it’s all just got too much. This shouldn’t be happening and more needs to be done to help support individuals with Endometriosis.