Behind The Spoonie Society

Sophie's Endo Journey

Sophie's Endo Journey

I remember the day I was diagnosed like it was yesterday. I was sixteen and had just woken up from an appendectomy. My surgeon came to let me and my mum know how the operation had gone. Yay, my rotten appendix was gone, however, the team had noticed and removed endometriosis from my Pouch of Douglas, bowel, right ovary and fallopian tube. When he said this, I was actually relieved, it wasn’t all in my head like a number of doctors I had seen had said, and there was a real reason for my pain. I thought, ‘great! I am finally going to get the help I deserve’.
Now where did it all start?
My year ten science teacher brought up endometriosis during class one afternoon, and as she listed the symptoms thought, wow, this sounds awfully similar to what I have been going through for the last two years. My symptoms started when I got my first period at the age of fourteen. I cried and cried to mum, the pain was unbearable, and I spent the week off school, in bed with a heat pack. A diagnosis of endometriosis wasn’t really considered as my symptoms weren’t entirely linked with my cycle; I experienced all kinds of symptoms throughout the month and not just when my period arrived. Instead, my pain was blamed on the recent passing of my grandfather and was explained as my body dealing with grief. Can someone please tell me how unbearable pain, vomiting, migraines, huge hot flush-inducing hormonal changes, and abdominal swelling that left me looking 6 months pregnant can possibly be linked to that?!
I was beyond embarrassed and thought what is the point of even asking for help if no one will believe me? I really struggled to manage my symptoms at school, and this left teachers and friends becoming frustrated with my attendance, and my need to always pop out to see the nurse. Everyone around me truly did think it was all in my head. My beautiful parents never left my side and always fought for answers. They researched different doctors and came to appointments with management ideas. But at the end of the day, the necessary referral to a specialist had to come from a doctor and not my hopeful parents.

 

Nowadays, I am a huge advocate for myself (my very supportive parents take over and advocate for my wishes and the care I want to receive when I am unable to). When I feel that my care is not adequate, I will say something. When I feel like I am being disrespected by a health professional, I will change practitioners. After being heavily disrespected by numerous so-called professionals I have promised myself to always call out what needs to be changed. Is it awkward? Absolutely, but it’s what I need to do, and I encourage anyone questioning the quality of care they are receiving to do the same.

I was blessed in a way, as my appendix started grumbling and this meant I would need a laparoscopy. Not many sixteen-year-olds would be excited to go under the knife, but I knew that this would be my only chance to really be heard and for the doctors to have a good look around for the presence of endometriosis. Following surgery, I met with a paediatric gynaecologist who prescribed me my first of nine different versions of the contraceptive pill. Each pill came with a world of unwanted side effects, one even left me heavily bleeding for three months straight and regularly delivering golf ball sized blood clots.

Now, six years later, I am in a similar position to where I started as endometriosis is a lifelong and incurable condition. I have experienced pain EVERY SINGLE DAY for the last eight years, six of those years I have had an answer as to why. Yes, I was very lucky to receive a diagnosis so quickly, but this label hasn’t and will not end my journey. Six years on, I am facing new challenges relating to disabling pain and newly diagnosed (via laparoscopy) stage four endometriosis. I’ve lost what are supposed to be the best years of my life to this disease. Do I let it define me? No, absolutely not but it has thrown a spanner in the works.

I am not going to sugar coat it, finding a doctor that I trusted and one that respected my wishes was not easy. Like many of us, I have unfortunately encountered some doctors that are still dismissive, DESPITE A SURGICAL DIAGNOSIS… can you believe it? Thankfully, care relating to my gynaecological health looks very different now compared to the first few years of my journey. I have now handpicked my treating team and have been very blessed by the support that I have received from them, particularly over the last two years. When meeting with a new doctor, I always bring a parent or support person along. Appointments can bring back traumatic memories and I often find that some information goes straight over my head as I am so busy trying to gauge if what I am being fed is BS or not. A little strategy I have picked up along the way is consultation summary notes. When meeting with your doctor, let them know that you would appreciate if they could please print off a summary of your consult notes. Letting them know early gives them time to open up a document and prepare if this is something that they do not normally offer. Knowing that my specialist is going to give me a summary of all the things we have discussed and the plans we have made really helps me to relax and slowly take things in during the appointment. Now if something goes straight over my head it doesn’t matter, I have all the time in the world to research new medications and treatment plans at home.

Whilst my health has significantly declined, resulting in countless emergency admissions and life-threatening infections, the treatment options available to me have significantly increased. Last year, I underwent two nerve block surgeries and three ketamine infusions. Never in a million years did I think that adequate pain management would be available to me and I never thought that my doctors would advocate so passionately for me to have access to something that has the ability to improve my quality of life. The nerve block procedures were challenging. Weeks of my life have been blocked out with the only memory of the admissions being severe distress and discomfort but, boy was it worth it. Whilst my specific nerve block and infusion regimen needs to be repeated every six months and is extremely difficult to go through and recover from, it has given me the opportunity to live the life I want to live, and it gives me a leg up in a world where I would usually have to stay on the sidelines. These procedures don’t take the pain away, but they do help the pain to be somewhat reduced as my body now dulls down the painful stimuli sensations.

If you are reading this and asking yourself, has she tried going for a walk or having a bath? Of course I have, and I can guarantee every spoonie has heard something along these lines over the course of their journey. Alongside the surgical interventions (nerve block and endometriosis laparoscopic excision and ablation surgery) I have tried a concoction of medications, distraction strategies and non-pharmacological management techniques along the way. Whether you have been fighting your battle for a while or you are frantically researching symptoms and management ideas for yourself, it is so important to remember that everyone’s journey is different. Some spoonies say that movement such as mindful walking or yoga is what helps them during a pain flare. For me, hot and cold therapy is what works best. Like many of us, during a flare I experience mad endo belly. I find that heat packs help to relax my abdominal muscles whilst helping to somewhat relieve the world of pressure that is building up inside from excessive swelling. It is important to be open minded along your journey and to not get defeated if a technique that works for me does not work for you. The journey you are on is tough and there’s no denying it, be kind to yourself and your body, you might find a strategy that helps when you least expect it.

 

Where am I now?
Well, I am currently experiencing a flare and am on the brink of yet another admission. Is this the view I want to leave you with? Absolutely not! So here is something I am proud of for doing while I’ve been battling it out with my reproductive organs:
600 of 800 hours of my Bachelor of Nursing (Clinical Leadership) student placement completed. I embark on my final placement in just two weeks and am only a few months away from officially stepping into the healthcare world and hopefully making a difference to the experience and quality of care that spoonies receive.

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