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The harsh reality for women with Endo

I was officially diagnosed with endometriosis in 2019 after a laparoscopic surgery. I was 20 years old.

I wanted to share my story for the women whose reality is they don’t have adequate medical care, they don’t have financial support to try all the things without working part/full-time and/or have dependents, and there is limited external support for them in their social circles. Having endo is so hard. I’ve had to maintain work and study as best I can to support myself for a good future, all while being in so much pain I can’t stand straight most days. Lying in bed crying with nothing but a hot water bottle and a groggy head from codeine. I have developed eating disorders from the fear of consuming food because it causes more pain than I already feel. But I have to keep going, I have to keep studying and working. I have increasing anxiety everyday from the single comment a doctor made to me about having a hysterectomy, with no follow up on what that would ever mean for me in terms of endo apart from taking away my choice to ever have children of my own. I have anxiety about something worse happening because how can something so painful and debilitating just be endo? I get angry, scared, upset. Yet, like many of you, I have to keep going, find things that make me happy, do things that bring me peace, no matter the internal chaos I feel.

I don’t remember having painful periods from the beginning of menstruation, but I remember noticeable pain at the earliest age of 15. My periods were very painful and I assumed them to be normal period cramps as all the girls in school complained of pain during their times of the month. It was the time in between my periods that caught my attention. I felt horrendous sharp pains down my legs and waist area anytime pressure was put on my pelvic area. I got bloated anytime I ate or drank, it felt like a 90kg pile of bricks was crushing all my organs, or like my organs were so angry they tore and bit at one one another. I was fighting constant feelings of sharp pains in my lower back, upper back, shoulders, neck, pelvic area, thighs and sometimes my knees.

I was a young competitive gymnast, swimmer and netballer and was often told my symptoms were from athletic strains on my joints. I don’t think this was incorrect, but I know now that wasn’t the overall reason for 24/7 pain I was living in at 15 and still live with now. In 2015, age 16, I was working and suddenly curled up in a ball on the ground after a sharp pain in my body – I couldn’t even tell you where I felt the pain, it was so strong it took full control of me. I went home, developed a fever and the pain worsened, so I was taken to ED and had an emergency surgery to remove my ‘ruptured’ appendix. After recovering, I woke up to an 8cm incision from my belly button. I was informed my appendix was fine but they found adhesions and a cyst they needed to remove, hence the rerouting of incision. At this time, I thought it was good my appendix hadn’t ruptured and now it wouldn’t be a problem in the future. However, I was told adhesions were abnormal for someone who hadn’t previously had surgery. That was it. Due to age, living situation and lack of education on endo at the time I didn’t enquire or demand more so went home to recover and got on with life. Not only was I trying to cope with unrelated life traumas, but I was trying to get through the horrors of high school in constant physical pain.

For me, that surgery changed nothing and pain got worse and more frequent. I had a friend who had surgeries for her endometriosis. From her information I thought I might have it but I wasn’t in a position to do anything about it.

It wasn’t until my second year of university where I got a female doctor who said she was sure it was endo and pointed me to the gynaecological specialist at the regional hospital. I was put on a long waitlist and after almost a year I was poked, prodded, scanned and given a date for surgery. I have always gone through the public system, but my laparoscopy was done privately by chance the public system was full on the day I was scheduled to go in. I was in paradise in terms of the room I was given, but the treatment from the nurses and surgeon was negligent and left me feeling more of a bother to them even though endo was found and removed.

I went through years of what I now know as ‘dyspareunia’. I was fortunate to have one regular partner for two years who was extremely understanding about my pain, so not having sex wasn’t the end of the world. It didnt’t stop me from feeling awful because I want to have sex and be able to pleasure my partner. I always had a once ‘normal’ sex drive but became afraid of having sex because it would be too painful during or excruciating for days following.

I wanted to share this story because I am now 21, and I feel relieved to have been diagnosed at 20 because it makes me feel validated in the daily pain I feel. I have been told the usual, ‘It’s just period cramps, take some ibuprofen’, but also told to change my diet – e.g. cut sugar, fats, dairy, gluten, meats, alcohol, and prescribed codeine and tramadol for pain relief. I have been told not to become reliant on it, yet they continue to be prescribed, and I have become reliant because my position as an independent full-time student doesn’t give much room to trial alternative methods like homeotherapy, organic eating etc.. I have been given little help beyond advice, and it has made me realise this is a life-long condition I need to be individually responsible for managing.

In the last year I have discovered Endo NZ, and instagram pages dedicated to women with endo which have been my main sources of validation, education and emotional support. While funding and education on endo is being more encouraged, it’s still an individually difficult pain to live with. I have and currently face the expectations of maintaining a high quality of life because my pain is not externally seen and I can still laugh, have fun, socialise, work and study. My work doesn’t get it, sometimes friends get frustrated at me for being too exhausted to see them and I don’t have it in me to always explain everything, I have spent 3 years studying getting extensions for every single assignment because often things just get too much.

I want whoever is reading this, and can relate, to know that it is hard and it can feel like ‘what’s the point’ BUT there are people here, sometimes close by, who you can talk to and make friends with to make things just that little bit easier. The biggest factor of getting me through my journey is human connection. We all need it, we all crave it and we can all get it if we are nudged in the right direction. There is no right or wrong answer to this journey we’re on, but there is a way to find the right support to survive and one day life a bearable, and hopefully one day very happy life.

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Strength through support - mā te tautoko, ka whai kaha, ka ora

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