Growing Up With Endo

Last updated: March 2020

I was diagnosed with endometriosis in 2018 when I was aged 17. However I had been trying to get a diagnosis since 2014. I started my periods at a very early age, the pain was crippling and just seemed to get worse as I got older. I missed a lot of school and had to move college 3 times. I would just get labelled as a ‘hypochondriac’ or told by doctors I must have IBS or a low pain tolerance hence being in so much pain on my period.

Hitting constant dead ends

It all didn’t seem to make sense, I would sit and cry to doctors for help and get no where apart from prescribed pain killers such as tramadol at the age of 17. Finally got referred to a gynecologist and even then they wouldn’t do anything because of my age. I was told I was too young for a laparoscopy, so I was put through testing out a range of contraceptives oral and internal to suppress the bleeding and pain. None of them worked... I was referred to a private hospital funded by the NHS through my amazing GP, I had my surgery and got told I had 12 cysts on my ovaries and endometriosis covering my bladder. I had actually had scans previously and was told one of my ovaries was double the size of the other, but this was apparently normal for my age? Clearly not.

Finally a diagnosis

I was so relieved to finally be diagnosed but so angry that I had been misdiagnosed in the past. This was just the start of it, since then the bleeding and pain had gotten worse and now I’ve been referred to multiple surgeons for bladder and bowel investigations. My gynecologist has tried everything including the prostap injection and HRT which induces the menopause which still didn’t stop the bleeding and pain even after being on it for 4 months. In the end she didn’t know what to do anymore so referred me to her senior who has told me to come off all hormone medication all together and try focus on pain relief as hormonal methods just don’t seem to work for me.

Not the life I deserve

I am now 19 years old and it feels like I’m at a dead end, I haven’t lived a life like any of my friends have I’m not able to go out, I can’t drink alcohol, I get anxious about going anywhere due to needing to be near to a toilet (endo on the bladder) and I can’t plan in advance so miss out on a lot. Luckily I have such an amazing supportive boyfriend who understands so well, just as well because I ended up in hospital on our first holiday recently in Tenerife, where I was rushed in by ambulance with low oxygen levels gasping for air as the pain had gotten to much. I was kept in hospital for 3 days, ended up missing our scheduled flight back, couldn’t understand any of the staff as they all spoke Spanish. They wouldn’t give me my fit to fly certificate due to the insurance company as they usually settle the bill within a couple of weeks where as the hospital in Tenerife wanted payment or I wasn’t allowed to leave. Luckily my parents and partner got the insurance to pay up and I was allowed to go. Not to mention we had to pay the doctor call out fee, ambulance fee and hospital deposit fee which cost 400 euro all together. I felt as if the holiday had been ruined and it’s all down to my endometriosis.

My endo pain is real

I’m blessed to have a family and partner who understand my illness but that doesn’t mean past employers, friends and health care professionals have understood me. I now work part time for my family’s business as I’ve had so much trouble with past employers, some even telling me I’m faking it ‘to get time off’ or to ‘go out with my friends’ (I wish!). I’m fed up of hearing that I have to have a baby now or I won’t be able to at all, even though my estrogen levels are so low at the moment I wouldn’t be able too. If I got a pound coin for every time I’ve been told ‘have a baby it will cure you’ I would be rich! I have my place to start university to do children’s nursing in 2020 and I just hope that this chronic disease is understood by all so I can follow my dream pathway.

I want to try and help others never discriminating no matter what pain someone comes to me with. I’m so happy to finally see endometriosis awareness on social media and on BBC news. Everybody needs to be aware of this invisible illness, it isn’t fair and we should all be able to lead a happy healthy life regardless of having endo.

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