Chronically twenty one
Georgia Smythe talks about her experiences of Endo impacting her life so intensely at a very young age. She conveys the truth of how hard it can be to make certain choices at the young age of 21 and also how to take on relationships when her life revolves around a chronic illness.
By: Fela M'tima
Fela: Hey Georgia! I really want to talk about endo and relationships but first explain when you were diagnosed with endometriosis and how that process was for you?
Georgia: I was first diagnosed with endometriosis around the age of 16. I had never really experienced what I guess people would call a normal cycle; I’d always had the extreme pain, all the other side effects, I just never had a label for it and assumed that what I was experiencing was just a normal period. When I finally was diagnosed, I was so young and really had no idea what Endometriosis was. I didn’t know then what I know now, it never even crossed my mind that this would be something I would have to live with forever. So, the process of being diagnosed back then wasn’t nearly as hard as it is now. What I am coming to terms with the fact that this is going to be something I am going to have to live and there isn’t currently cure for it. That is something that has been much harder for me than initially being diagnosed. However; it is very reassuring to have a label to be able to give doctors rather than being dismissed as someone with “period pain” or a teenager who is “overreacting”.
Fela: How has Endometriosis affected your relationships?
Georgia: This is honestly a hard question to answer because it has effected every single relationship in my life, from family, to friends, and to partners. I’ve had to finally come to terms with the fact that I do have a chronic illness and whoever is around me, unfortunately is going to have to deal with that. At 21, I never imagined I would be missing parties to be spending the weekend in the emergency room. I never thought I would have to already be thinking about children and the process of freezing my eggs. I never expected that I would feel like such a burden to those around me and it honestly is something I still am wrapping my head around. I think it’s also hard for those around me to understand that with any chronic illness or pain, it can happen very suddenly and while I may have been okay yesterday or even an hour ago, that can change any second of the day.
I've always felt like communication is the most helpful key to bettering a relationship when someone has a chronic illness but sometimes it can also cause us to feel like we are being a burden or asking too much out of our partner. How do you think we can learn that it's always okay to ask for help?
Something my mum always tells me which I also apply to having Endometriosis is those who matter don’t mind and those who mind don’t matter. I learned when I met someone last year who is very dear to me, if it’s the right person, they won’t make you feel like a burden. They will lift you up when you can’t do it yourself and they will be there for the good, the bad and the ugly. It is important for you to feel comfortable enough in expressing how you’re feeling, that those around you do understand that despite being fine one day, you can be in excruciating pain the next. Honesty is truly the best policy and if anyone ever makes you feel like you aren’t good enough because of a condition that you can’t control, then they simply do not deserve you.
Fela: I completely agree and I'm going to apply your moms quote to my endo life as well. That is so, so true!
How has living with Endometriosis changed your mental health?
Georgia: Living with Endometriosis has probably impacted my mental health more than any other aspect of my life. It’s the exhaustion of being constantly drowsy and fatigued due to strong medication, it’s the fact that I cannot pinpoint a day since I was 15 years old where I have gone 24 hours without pain, even if it’s only brief. I think, like any illness, it is extremely hard to comprehend that you don’t have any control over your body or that it is letting you down. Chronic pain is one thing, however increased anxiety and depression is another struggle. Feeling like I’m not being heard, or when many people who tell me over and over “you don’t look sick” has affected my mental state. It is another aspect of Endometriosis that many people don’t realize. What defines looking “sick”? Neither Endometriosis or depression can be seen. I am frequently in and out of hospitals due to my pain or experiencing a change in symptoms. I can’t count the times I have had medical professionals doubt me or ignore my cries for help.
I have finally found a great gynecologist, who believes you need to treat Endometriosis aggressively; cut out the tissue for the Endometriosis to stop coming back. He listens, takes action quickly and has a very different approach. He is an endoscopic specialist and is passionate about the disease. I think that makes a big difference. I also see an amazing psychologist who specializes with young women with chronic illness and pain. The combination of having two practitioners who have joined me in my fight for a better quality of life, is something that makes this all worthwhile. It is something I would highly recommend to anyone whose mental health is suffering while they battle a chronic illness.
F: What sort of treatments have you tried for endo? Which ones would you advise to help others?
G: Gosh where do I begin. I have seen multiple doctors from surgeons, to pain specialists. I have been on over 13 different forms of the pill as well as a Mirena. I’m having a rough patch right now so I currently take around 5 different pain medications a day just to ensure I can function, they are all so strong. I can’t do anything but sleep due to the medication. I am unable to maintain a steady job or even something as simple as a relationship. I have tried holistic approaches, cutting out and adding certain foods in my diet, surgery every 9-12 months, massage, chiropractors, acupuncture, physiotherapy, pelvic floor therapy, psychology, meditation, steroid injections, and hormone treatments. I mean honestly the list could go on and on. The main thing I would advise to any other women who are suffering from Endometriosis, is to find yourself a good gynecologist. Someone who listens to you, understands and can appreciate your pain and is just as invested as you are to improving your quality of life. I myself have seen multiple, some who have dismissed the fact that I could be so sick at such a young age and others who wanted to shut down my ovaries or give me a hysterectomy. It’s all about finding the right doctor for you and your needs.
F: Has Endometriosis affected your fertility and if so, how?
G: Unfortunately a large part of having endometriosis is that it has caused me to have an immense fear of being completely infertile. I’m having upcoming surgery this Thursday on my ovary and despite knowing that it is what is best for my body, my illness and my pain, I can’t help but be terrified at the thought of something going wrong. The thought of it impacting my chance at fertility and having kids of my own in the future, which to be honest, is all I want. In saying that, I know that modern medicine is improving each day and we are very fortunate to have such amazing doctors, treatments, and fertility centers.
F: Has fertility impacted relationships in your life? If so, what has helped you get through it emotionally?
G: I’ve been extremely lucky in that I have had supportive people in my life who have always been understanding of my fear of infertility and having children early. When it comes to partners, I can understand at 21 you probably aren’t even thinking about kids. I have had partners in the past who have completely understood my situation, I think when the right person comes things will progress naturally and I will address it at the time. As mentioned earlier I was lucky enough to meet someone who made me feel completely comfortable with my condition and that is what helped me get through the testing, surgeries, and the emotional toll it all took. Knowing there was someone who cared for me and for once I felt I wasn’t a burden, and that I was more than just my illness.
F: Yes! We are always more than our illness but it is so easy for our illness to take us down with it. So, kind of going back to relationships, what do you think is the hardest part of dating while having a chronic illness?
G: I think the hardest part about dating with Endometriosis is just knowing you’re going to be bringing someone else into your already complicated world and be terrified of how they will handle it. For me, my Endometriosis can mean at any second I am in crippling pain, crawled over the bed with tears streaming down my face while I lay there screaming, feeling like my insides are being scraped out by a razor blade. It can mean I can’t have sex due to the pain or due to recovering from surgery, let alone leave the house without the fear that my pain will flare up and I won’t be able to walk. Partners have had to take me to the ER and hear me answer the most personal questions about my illness, when it could only be our second date. Personally, as I mentioned I am still coming to terms that this is going to be something I am going to have to live with, so dating isn’t something that I’m interested in right now. I met someone who showed me what I deserved and when the time is right I will go after that.
F: I want to thank you so much for sharing with me and I'd love to leave it open now for you to share anything else about your journey or any other advice or tips you have for other women out there struggling?
G: Educate yourself and those around you about your illness and remember your heat pack will always be your best friend! Thank you girls.