Whilst I make a concerted effort to speak about my conditions all year round, March is Endometriosis Awareness month and is always a good time to talk about it in-depth.
Ladies - painful periods, heavy bleeding, passing out or vomiting from pain, abnormal bleeding between periods, constant pain, pain during sex - among many things - ARE NOT NORMAL.
As many people who follow me know, I have endometriosis and adenomyosis. For those of you who don't know what these are, they are chronic conditions that directly affect your uterus, ovaries and reproductive system, in addition to your immune system, general physical health and mental health.
Endometriosis: Endometriosis is a condition where tissue similar to that which normally lines the uterus grows in other parts of the body. With each menstrual cycle as the lining is shed, tissue which is outside the uterus also bleeds. This bleeding causes inflammation and from this; scar tissue, cysts and adhesions are formed. (From www.qendo.com.au)
Adenomyosis: Adenomyosis is a disease where the endometrium grows into the muscle of the uterus. The patient then suffers numerous microscopic bleeds in the muscle, at the time of the period.The symptoms of adenomyosis are often very similar to endometriosis, with heavy, painful periods being the most common. Added symptoms include referred pain to the back and down the legs, with general associated feelings of fatigue. The pain can be at least as bad as endometriosis, sometimes worse, because the patient doesn’t yet have a diagnosis. (From www.qendo.com.au)
I did an interview middle of last year however I typed out some answers to the questions in greater depth before simplifying them to send off. However, if this blog post can help even one person to know they aren't alone and their symptoms aren't normal then it is worth every word.
When did you discover you had endometriosis, and how did you know?
I was diagnosed with endometriosis at the end of 2016. I was suspicious that I had Endo for about 8 months prior as my best friend had Endo and she had been saying she thought I might have it for a few years but I thought it was just period pain. But it got to the point on period where I was violently ill for two weeks, I didn’t eat, I was in so much pain I was biting my pillow at night to stop from screaming whilst I was on tour for work. My symptoms were heavy bleeding, large clots, excessive pain that would make me throw up or pass out, pain that felt like hot bared wired was wrapped around my legs and abdomen, lower back pain (which I found out was because I also had adenomyosis) and I would have to be on codeine level pain killers to be able to get through the day. The pain also hit between periods. If it wasn’t for my best friend talking about it so openly and encouraging me to see a gynaecologist I would have just keep going and living with it, because I thought it was normal.
How did the diagnosis affect your life?
I had a mixed reaction to my diagnosis. The biggest initial feeling was relief: I wasn’t crazy! The pain wasn’t in my head! There was a reason! However, I found out quickly after my first surgery that my first gynaecologist did not remove most of my Endo. She left most of it in, so after my first laparoscopy I had increased pain and bleeding. When I went back to see her she told me we could go back in in 6 months to “check” on the Endo (which after paying a cool $5k to have it removed in the first place was not what I wanted to hear) and if it didn’t calm down we would have to look at either medially induced menopause or a hysterectomy. It did my head in and really broke me... I was 24 and finding out you have a chronic illness is enough of a mental burden on its own, let alone being told to live with the pain for the foreseeable future and then consider a hysterectomy if it didn’t get better. It was at this point I started struggling with my mental health. Luckily my best friend recommended me to her gynaecologist (who is my current gynaecologist) and he is fabulous. He took one look at my scans and said he could see endometriosis, and adenomyosis. I went in for my second laparoscopy 3 months after my first and had another Mirena put in and went onto 2 progesterone tablets a day. About 2 months later I ended up going back in to hospital to have two mirenas put in as the one was not holding my adenomyosis at bay, which meant I was still bleeding. Since then I spent about 8 months on the two mirenas and two progesterone tablets. He also put me on cipramil for my mental health. At the beginning of this year I started having constant pain and bleeding again, due to degree of my adenomyosis. When the initial treatment wasn't working as successfully as we had hoped, my gynaecologist put me on a treatment of Zoladex, an intense progesterone injection that I have one a month. The treatment normally kicks in successfully for people around the 2-3 month mark. Mine did not start working until month 5, so I ended up doing the Zoladex treatment for 8 months. However, it has been the most successful treatment so far! I still have 2 mirenas and I am on 1 progesterone tablet a day, and tablets for my mental health.
What is it like living with endometriosis?
Living with endometriosis is like being an intruder in your own body. You have little to no control over your body, and this affects your mental health, you energy levels, you ability to exercise and do ‘normal’ everyday activities. In the past 2 months I’ve spent about $35,000+ on medical appointments to try and manage my Endo/Adeno and the related effects on my body. I have seen gynaecologists, Osteopath’s, exercise physiologists, psychologists, have spent hundreds on medication for mental health, daily progesterone, painkillers, follow up appointments - and I have private health. I have friends who do not, and their bills are even more astronomical. I planned to move out two years ago... that money went to my medical bills. The effort it takes to leave the house some days it literally too much, as I’ll be wiped out from a bout of pain. My chronic fatigue has come back due to the poor state of my immune system and the stress of not knowing what my body is doing or why it is doing it. My weight fluctuates constantly because of the hormones I’m on, which is also great fun for my mental health. It’s overwhelming and it can be alienating, but there is some comfort knowing that a large part of it is hormones that are additional to my situation.
Why is finding a cure, and raising awareness (and funds to continue research) so important? Finding a cure is imperative for a disease that affects 1 in 10 women. That is a horrifying statistic. (From my personal experience, I'm suspicious that it is actually higher than that.) Furthermore, it is a rich western women’s disease. The financial strain this disease places on women is crippling. Think of the women in developing countries who even if they were diagnosed have absolutely no way to afford the surgery (let alone have access to it) when they don’t know where their next meal is coming from. This is a crisis effecting the worlds female population. I didn’t ow about endometriosis until I heard about it in my late late teens/early twenties. It’s not good enough, that a disease that effects 1 in 10 women from the start of their period is not discussed in schools. We have to keep working to break the taboo on period talk, to normalise this conversation so that we can raise awareness about painful periods not being normal, heavy bleeding not being normal, missing school not being normal. If girls are still whispering about getting their periods in school corridors, how are we going to talk about endometriosis and it’s prevalence? Women who live with endometriosis, along with anyone who lives with a chronic illness, live in a constant state of invisible pain and exhaustion. Funds and awareness are absolutely imperative, because it’s not just a “bad period”.
How do you find support for your condition?
Mixed. Once you tap into the right groups it’s fantastic but there is still such a scepticism about Endo and it’s severity that it’s often hard to have conversations - even with GP’s - about the impact that it has and how prevalent it is. The work that QENDO and EndoActive are doing is incredibly vital. The resources they have available, and their constant social presence is very encouraging. We need funding to further support their awareness endeavours, to get the information into schools, into doctors practices, and into the public eye.
If you have one piece of advice to ?
Never be afraid or embarrassed to get a second opinion. You know your body. Trust that. I dread to think where I would be now if I hadn’t pushed for a second opinion and met Dr Tronc.
If you have painful periods or if you know someone who has painful periods, and if you have someone in your life who has gone through this, please talk to them. They get it, and 99.9% of the time they will be all too willing to talk about it and be a listening ear. And if they aren't, email me or contact me on Facebook or Instagram - I am ALWAYS up for a chat.
You are not alone.
Believe me, I know your brain will tell you you are alone. Mine did the same thing.
Having people in your life who support you, listen to you, validate your pain and your chronic illness is SO incredibly important.
So wether you have painful periods or if you know someone who does, let's start chatting.
It's never too late. x