Ilona’s guest post is the 19th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
My name is Ilona, I’m from Coventry in the UK, I work as a Veterinary Nurse and I live with my boyfriend and our rather sassy cat Minerva. (We are major Harry Potter fans). My blog Pesky Pelvis is my outlet for all things chronic health related. I was only formally diagnosed with endometriosis last year but have been experiencing various symptoms for the past six years.
Endometrosis is when cells similar to those found in the lining of the uterus are found elsewhere in the body. Most often in the pelvic cavity, including the pelvic walls, bladder and bowel but can actually be found anywhere. It has been found on the diaghfram and even lungs.
Symptoms vary greatly but can include heavy and painful periods, pain during sex, bladder related pain, IBS like symptoms and infertility. A small amount of disease can cause severe symtoms and people with severe endometrosis have been known to have little or no pain and infact are unaware they have it until they come to try and concieve.
Currently in the UK the average diagnosis time is 7.5 years. This ridiculously long waiting time is down to a range of factors. Symptoms vary from patient to patient and can be easily misdiagnosed. GPs and Primary care doctors are still not quick enough to refer patients to gynecology, often attributing women’s symptoms to simply “bad periods” or anxiety or depression to name a few.
A formal diagnosis can only be made via surgery. Where a surgeon assesses the pelvic cavity and structures and removes any endometriosis they may find. The invasive nature of this means unless a patient is aware of the disease before a diagnosis it can take years.
Once a diagnosis is received treatment is limited to hormonal therapies to treat symptoms, surgeries to remove endometriosis and or scar tissue and pain killers to treat any chronic pain.
My own symptoms include heavy and painful periods, chronic pelvic pain that I experience month long, bladder pain and urinary symptoms, pain during sex and bowel symptoms.
My chronic pain is the symptom that affects me the most, taking opioid painkillers on the daily to manage this. I somehow manage to work full time but it comes at a cost, spending most of my spare time in bed recovering with my trusty heat pad. My bladder related pain also means I often have problems passing urine and spend an awful lot of time stuck on the toilet simply trying my damndest to pee.
This disease has impacted my relationships. Friendships have been tested and not all of them have come out the other side. My relationship with my boyfriend has been put under an awful lot of pressure over the years and I’m lucky enough to say it has only made it stronger, but it has been trying for both of us. This disease can change your entire life, and I often have to remind myself that when I’m morning the life I can no longer live he is too.
Things have been sacrificed along the way but I still believe the biggest casualty in all of this is my social life. I spend most of my time either working or resting. I say no a lot more to things and try my best to maintain a small number of close friendships as opposed to the large circles of friends I had before.
I don’t always succeed in all of this. I can be unfair to myself and I can push myself too hard. I have realised that I spend so much time thinking about all the things I have given up or lost I don’t give nearly as much time to the things I have gained.
I truly believe I have gained a better understanding of myself, of my own strength and my relationship. I’ve found blogging, something I really love and something I don’t think I’d have ever done if it wasn’t for this disease. Lastly I think endometriosis has given me greater empathy for others and myself. I think i’m a kinder person now than I was before and that can only be a good thing. Endometriosis is a massive part of my identify but it’s not the only part.
My Favourite Superhero
Finally as requested by the wonderful Ami my favourite superhero or villain! Definitely Buffy the Vampire Slayer everytime.
Thanks Ilona for sharing your story with my readers and me!