Abbie's Story of Endometriosis
I'm Abbie, aged 25, the founder of the blog and Instagram @cheerfullylive. I was diagnosed with deep-infiltrating endometriosis in May 2019 after a 10-year battle of pain, symptoms and medical gaslighting. March is Endometriosis Action Month, so I want to talk a bit about what endometriosis is and then go on to share a part of my story.
What is endometriosis?
Endometriosis is a condition where tissue similar to the lining of the uterus, grows outside of the uterus. It has been found on every organ of the body and is more commonly found on the outside of the uterus, ovaries, bladder, bowel, kidneys and the diaphragm. It causes a lot of inflammation, scar tissue and pain. It affects 1 in 10 of those assigned female at birth and there is no cure. It takes an average of 8 years to get a diagnosis, which is far too long!
What are common symptoms of endometriosis?
The most common symptoms of endometriosis are debilitating period pain (which stops you from doing your daily activities), heavy or irregular bleeding, painful ovulation, chronic pelvic pain, pain in back and legs, pain with or after sex or internal examinations, pain before, during and/or after bowel movements, pain with passing urine, fatigue, depression and in some cases infertility. It is a whole body disease and can not only impact your periods, but many different aspects of your life too.
The only way to be definitely diagnosed with endometriosis is to have a diagnostic laparoscopy which is a surgery where they check for endometriosis adhesions and then take a biopsy of some affected tissue, which is then observed and confirmed as being endometriosis.
How is endometriosis commonly treated?
Common treatments that can be tried to reduce pain and symptoms are hormonal contraceptives or medications that put you into a temporary menopause. However, it is important to note that these do not reduce growth or stop endometriosis growing, but can help you manage the pain in the meantime. The most effective form of treatment is endometriosis excision surgery, which is where it is cut out by a skilled endometriosis specialist during surgery. However, as I said previously, this is not a cure and it can grow back again.
Pelvic floor physiotherapy is such an incredibly helpful service to access. It can give you ways of helping you relax your pelvic floor muscles so that sex is less painful and they can support you with chronic pelvic pain, pain passing urine and opening your bowels too. It’s definitely worth being referred if you have endometriosis.
My story with endometriosis
At the age of 14, I experienced my first episode of excruciating pain. Every month, my periods would come and I would be bed-bound, vomiting, with nothing easing my pain. For many years, I thought this was normal because my mum also experienced really bad period pain and because periods just weren’t talked about openly, I had no idea what I was experiencing was abnormal! It wasn’t until the pain became so bad that I couldn’t control it with over the counter medications (many months I would go over the recommended dose of paracetamol and ibuprofen), that I went to a doctor. However, I was immediately dismissed and told it was 'just part of being a woman' and 'I was just one of the unlucky ones'.
Things only escalated when I went to university in 2014. I started getting excruciating pain in between my periods. I even had one episode where I was laid on the bathroom floor, nearly passing out from the pain, with my housemates on the phone to NHS 111 wanting to dispatch an ambulance for me. I was constantly going back and forth to doctors, but was always gaslighted and dismissed, being told I had a 'low pain threshold'. Once, I was even asked, 'Are you sure you are not over-exaggerating?'
It wasn’t until my pain became chronic in 2018 that endometriosis started being investigated. I was referred to a number of different specialists to start with, but no one could ever find anything wrong. I was finally referred to a gynaecologist, but was immediately told that I could 'never have severe endometriosis because I was too young' and 'it would probably just go away on its own'. I pushed for an MRI, which I had in April 2019 and my scans came back showing severe, deep-infiltrating endometriosis. The relief I received after I got my results was huge. My pain was real.
Endometriosis excision surgery
I went on to trial the mini pill for the next 6 months but this didn’t make any difference to my pain. So, I had endometriosis excision surgery on 7 December 2020. I had 3 specialist surgeons involved, including my endometriosis specialist, colorectal surgeon and urologist, as they believed the extent of my endometriosis was so widespread. They found endometriosis all over my uterus, left ovary, bowel and recto-vaginal area. I also had the nerves spared around my kidneys to remove some endometriosis which was close by.
Thankfully, I definitely felt some relief from excision surgery. Surgery, combined with pelvic floor physiotherapy, has been amazing for giving relief from painful sex and my daily chronic pain. However, the severe period pain has come back again, as well as a few other symptoms, which in turn brings with it a lot of anxiety about endometriosis returning, because unfortunately there is no cure!
'Being diagnosed with endometriosis can be an incredibly scary, lonely and overwhelming experience. You have an invisible illness that’ll last a lifetime, with no cure and the possibility of being infertile. It really impacted my mental health and I struggled with a lot of social and health anxiety for the first few years and, after 10 years of constant medical gaslighting, I started to realise I was suffering with medical trauma.'
Finding a community
I needed a place where I could speak to others who truly understood, so that’s when I set up my blog and Instagram @cheerfullylive. I used my platform to document my journey, chat to others who were going through the same as me and share any advice which had helped me whilst going through the diagnosis process. I’m so thankful for this community and my little platform. I’ve not only been able to support so many people in getting an endometriosis diagnosis, I’ve encouraged them throughout their journey and shared helpful advice. I’ve also found comfort through everyone’s kind words and knowledge, as well as being able to help others feel a little less alone!
There have been so many amazing opportunities since starting Cheerfully Live such as becoming an Endometriosis UK Ambassador, speaking on the radio to share my story, being on ITV News and collaborating with many amazing brands, charities and companies on raising further awareness for chronic illness. I really am so grateful for the community of amazing warriors I have met and for the space to talk more about the impact of endometriosis!
Top tips
Lastly, I wanted to share a few top tips if you think you have endometriosis or already have a diagnosis:
👉 If you feel like the pain with your periods or any other pain/symptoms are not normal, please seek help. If you aren’t listened to or made to feel like your issues are insignificant, seek a second opinion. Ultimately, you know your body best, keep advocating for yourself.👉 The biggest piece of advice I could give is to get yourself involved in the chronic illness community. There is such a wonderful presence online of people sharing the realities of living with chronic illnesses on Instagram, but Facebook is also amazing for joining different groups that share lots of helpful advice. Endometriosis UK offers face-to-face support groups, as well as lots of accurate information, so I’d definitely recommend their website. It’s a great resource.
👉 Research and really understand your condition, so that you are best able to advocate for yourself.
👉 Be honest and open with those you trust around you. Allow people to really see what it’s like living with your chronic illness. Let people in, allow them to help and support you!
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