What was the beginning of your endometriosis journey like before you knew what was happening?
Terribly painful periods. At one point I was taking my Mothers cancer pain meds. I take 2-4 in one go and start hallucinating from the strong pain killers – but the pain was just that unbearable that I needed the pain meds so badly. Initially it was just thought to be bad period pains. Later on it was thought to be bad IBS and intolerance of things like lactose and gluten.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was first diagnosed at 20 with mild endometriosis. After spending my high school years in terrible pain (but never going to a gynae), I went to my first gynae at 20. Beforehand I was just seeing GP’s who would each just prescribe a different pill for me to try to help with hormones, pain, bloating etc. When I was eventually taking the Schedule 5 pain meds like smarties, the one GP suggested I see a gynae. The gynae suggested yet another pill for me to try, or for me to have a laparoscopy for him to see what’s going on internally. At that point I was so tired of different pills and the side effects (as well as the terrible pain and never getting any relief) that I opted for the surgery. This was when the mild endometriosis was diagnosed. However, they placed an IUD in, did a scrape and put me on another contraceptive pill with not much advise or background on the disease. Fast forward 5 years later and I experienced excruciating pain one morning. I was rushed in for emergency surgery to have my fallopians tube removed as I had a cyst that had burst and wrapped around the tube. I had another scrape done in that surgery. I was then placed on Visanne – an official endo medication. Around 2 years later the pains grew more intense yet again, and I was in daily chronic pain. Once again it was thought to be IBS or an intolerance as endo was still not fully “known” with all the symptoms. I went to an endo specialist and was scheduled for another laparoscopy, however before I could have that done I needed to go through freezing my eggs. In my third laparoscopy the endo was cut out and burnt, and it was schedule 4 which meant it had spread to various other organs. 1.5 years later and the pain is returning yet again, and there is a concern that my ovary may be fused with a muscle due to the endo lesions, causing the full throbbing pain in the ovary.
What did it feel like to finally have a name for what you were experiencing?
It was validating to know that the pain I had been experiencing was not “in my mind” or me “overreacting”. I had been, and still am, quite hard on myself when I have an endo flare and I feel exhausted and sore and really low, and I feel like I’m just overreacting and I should pull myself out of it and just keep pushing myself. However, with more and more acknowledgment and research of the disease, it’s becoming so much more validated that what my body is experiencing is real and I need to give it the rest it deserves and the time it needs to just rest and recuperate. It also helps a lot having a supportive partner as well as a supportive family/friends who have not experienced anything like this for themselves, but still believe you when you say you are sore or tired or just not feeling like yourself and try help as best they can or give you the time you need.
How does endometriosis show up in your body and daily life?
I have a lot of fatigue and exhaustion and often need to nap almost daily. I sleep well at night and will still wake up feeling so exhausted, and even after napping I will still feel tired. The exhaustion doesn’t leave. The pain can sometimes be really discouraging as it can affect your whole day and mood. You feel so useless sometimes and often I compare myself to someone with a life altering disease or condition and think I’m being so ungrateful and pitiful with my “pain”, yet on the good days I realise just how bad the bad day was and how sore I was. You feel like you’re letting people down because you just aren’t often feeling up to things. Sometimes you push through to make others happy but then it takes its toll on you later. Trying to have an intimate life with your partner is so difficult at the fear of painful intercourse is constantly on your mind, or the pain and bloatedness after Interhouse. No matter how incredible my partner is, and understanding, considerate and caring – you still feel like you’re letting them down or disappointing them.
How would you describe the pain or physical challenges of endometriosis?
The pain I have experienced over the years has varied. Now that I am on both Visanne and Gabapentin (nerve blocking medication) the pain is a lot more bearable. However I still have days when it flares up badly enough for the meds to be pointless. Most days now however, it’s more a dulled throbbing pain, sometimes with a sharp pull/stab, sometimes going from the uterus into the hips and lower back. Before the meds it was a terrible pain that was relentless and just affected the lower back, hips, uterus. The daily challenges I still experience with endo is the constant, chronic fatigue and never being able to sleep enough. I also battle with pain more so on the left ovary side and it can often be sore enough that I just want to lie down with a hot water bottle.
Do you have “good days,” and if so, what do they look like?
I do have good days because of the meds I am on. If I accidentally miss my Gabapentin then I am in a lot of trouble the next day. But good days are when I have energy too and I can continue with gym and chores and stay up a bit later than usual.
How has endometriosis affected your education, work, routines, or ability to make plans?
I was in a lot of pain at work before my latest laparoscopy. I was often taking pain meds well before breakfast and then numerous times throughout the day, as well as having my hot water bottle glued to me, just to get through. I had numerous dr appointments trying to get to the bottom of things. Recently it’s more the fatigue that affects work as I am exhausted during the day and more so when I get home. It also makes keeping a consistent workout routine very hard to keep up. As well as other chores around the house. Most weekends I then just want to stay home and sleep, but we do try and get out.
Has endometriosis had an impact on your finances or access to care?
I have spent a lot of money on specialists – especially before we knew my exact diagnoses. I was seeing gastroenterologists and dieticians and so forth trying to figure out why I was in so much pain. Luckily having Medical aid and gap cover helped with the operations and procedures I’ve needed along the way.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My current doctor is an endometriosis specialist and he has been phenomenal with helping me. He is very caring and sympathetic and has not once disregarded my pain. Previous doctors weren’t very up to date with endo and didn’t really take note of it when I mention I had been diagnosed with it. If more information had been known, they possibly could’ve directed me to a specialist much earlier on and I could’ve gotten the help I needed as opposed to going to so many other specialists which weren’t necessary.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I have had mostly positive experiences with the surgeries. My doctors have all been really good and I’ve had no major complications. If I’ve felt any discomfort or pain afterwards, they been available for me to see and be seen to. I’ve had a lot of guidance and help with my current specialist on medications and ways forward to help with pain as well as what we should/ should not be doing before my finance and I plan for children. For example, even though the pain has come back recently, we do not want to rush into another op as we are looking to hopefully start a family next year, so we need to consider the pros and cons of operating and causing more scar tissue etc.
What has it been like to live with a condition that often isn’t visible to others?
Very difficult as I often get told “you don’t look sick” or “you’re looking so good though” or “you must hide your pain really well”. I am a people pleaser and I hate attention on me too, so I often keep quiet even if I’m in a lot of pain. Therefore when I do say sometime it often comes as a shock to some people in my life. And if I’m not up for something I do tend to feel guilty as I immediately think that they are thinking I’m just “pulling the sick card” to get out of something because I don’t look sick or sore.
Have there been times when you felt dismissed or not believed about what you were going through?
I’m very lucky to have an incredible partner who believes everything and is super helpful and supportive. My friends and family are also amazing and because I try do as much as I can and not use endo as an excuse, I don’t often let people down. But every now and again if I really am not coping and have to cancel or postpone, most times people do understand. I feel it’s more work colleagues that don’t really get it as I haven’t been open about my endo with them. I feel like if you’re a woman and you don’t suffer from endo, you kind of think “well how bad could the pain be – we all have bad period pains”. And they don’t know the extent of how painful and debilitating it is. So being “absent” from work for “period pains” is not something they’d really understand. However that’s possibly on me because I haven’t opened up to some colleagues about it and I’m sure they would understand it I did.
What has the emotional or mental side of living with endometriosis been like for you?
Very difficult. A lot of endo patients are put on antidepressants or anti anxiety because of hormones being so unbalanced. But on top of that, I also feel like there’s a constant feeling of being ungrateful for a body that supposedly looks and acts normal. There’s a lot of guilt when you think – there’s people out there with so much worse than I have it, I’m just being ungrateful. I battle with that a lot. And I get so disheartened and frustrated when I have a good day or two and I feel on top of the world, and then I crash out of nowhere and I’m sore and tired and I feel like my body is useless because it can’t even go a full week without feeling terrible. And then I feel guilty for hating on my capable body when some people are disabled or sickly. It’s really horrible.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I’ve come to appreciate and admire my body and strength a whole lot more. I had to go through the egg freezing process and I did all the injections by myself and it was a really empowering moment. My body has endured a lot with this disease and it is incredibly, horrifically relentless, but I keep trying my best to show up for myself, exercise, socialise, do hobbies, work, play sports and so on. So it’s given me more self worth over the years. And my operation scars are little reminders of all the things I’ve been through and continue to go through.
How has endometriosis affected your family relationships, friendships, or dating life?
My friends, family and partner have been incredibly supportive. Especially over the years as more abs more research comes out, it has given them all a bit more awareness and knowledge of what I am experiencing and they are able to support me even more.
Has endometriosis had an impact on intimacy or your sexual life?
There is a constant fear of pain during or after intimacy. I often have to psych myself up for intimate moments as I know I’m going to be uncomfortable afterwards. Luckily my partner is very understanding and often asks if something is hurting or tells me to be honest if I am in pain and don’t want to be intimate.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
This has been a big worry for me as not only do I have the endo but I have also lost a fallopian tube. However, my specialists are all very positive and since my partner and I hope to start trying next year, my specialist has been very helpful with discussing next steps and planning the way forward.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
A hot water bottle is what is my go to for both physical and emotional. As well as a nice hot bath.
Do you feel supported in your journey? Who or what has helped you most?
My partner, my father and my aunt have been the biggest supports.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
One friend who also had endo. She has also had a really difficult time and has also one through the egg freezing process. It is also great to speak to someone who is experiencing what you are as it helps to know that your are feeling is valid.
How has your relationship with endometriosis changed over time?
I have become more frustrated with the disease as it is so relentless. Every time we think we have it under control, it acts up again and I feel I can never fully say I’m pain free and feeling excellent.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It has been amazing that more information and knowledge about endo has come out. And that more doctors are taking it seriously and women are getting the treatment and attention they are needing.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
More people are posting about endo. However the only concern is that doctors may be ‘over diagnosing’ people now. A painful period is automatically assumed to be endo – and people can walk around and say the have endo but not know the full extent of it as it is so so much more than just a “painful period”. So it is great that it is more acknowledged, however, hopefully it does not become everyone’s go to and starts discrediting the women who are really suffering with this terrible disease.
What would you like more people to understand about endometriosis?
It is not just a “painful period” as majority of women have painful periods. It’s a debilitating kind of pain, and more often than not, it’s not only during your period, it’s constant chronic pain, all day every day. It also causes insane fatigue, depression, nausea, painful hard bloating and so many other horrible symptoms that make day to day life difficult to cope with.
When you think about the future, what fears, concerns, or hopes do you have?
I have fears for bringing children into the world and I hope and pray I can. I have concerns that after having children the pain and fatigue will still be so bad and affect my ability to be a present parent. But I also have hope that with more and more research and knowledge on the disease, we’ll continue to find ways to help better our lives.