The month of March marks Endometriosis Awareness Month, a movement dedicated to raising worldwide awareness of this often debilitating disease affecting 1 in 10 women. On this day, exactly 12 month ago we published a set of stories of four women living with endometriosis. This year we have checked back in with those women to see how things have changed for them in in the last twelve months.
Tamar, One Year Ago
It took me 7 years to be given the diagnosis of endometriosis. 7 years of unexplained pain, fatigue and bloating. Being diagnosed with endometriosis was life changing. At first I had this rush of relief, relief to know that every time I had an ultrasound or scan and nothing came up there was still something wrong. Relief to know that every time I attended emergency for 7-8/10 consistent pain, I was there for a reason. Relief to know that when I was in pain and needed strong pain relief, I wasn’t a drug seeker as I had been accused of being and relief to know that as much as I had considered myself a hypochondriac or a sook, I had a reason for everything and it wasn’t all in my head.
Endometriosis is a very unique disease that affects every individual differently. Someone with mild endometriosis can struggle with extreme symptoms and someone with severe endometriosis may experience no symptoms at all. Some treatments such as a laparoscopy surgery, a hysterectomy or the insertion of a mirena provide relief from the disease but are not a cure and do not provide relief for everyone. September last year, I went ahead with a laparoscopy procedure in hope for some answers and in hope for some relief. I was so happy to be told it wasn’t all in my head and was excited to be living with a potential pain free life.
However, my life now consists of a cocktail of medications in the morning and at night and constant opioid use to get me through the day during an acute flare of my pain. Every medication has side effects: drowsiness, dizziness, constipation, memory issues and hot sweats to name a few.
Since surgery I have not been able to return to dance, something I have done since I was 3 years old. I can’t go to the gym and I struggle to be at work as my job is very physically and mentally exhausting which causes an exacerbation of my pain. I can’t even wear a pair of jeans any more as it causes too much pressure on my pelvic area and doesn’t leave room for me to bloat. I can’t afford to buy myself anything nice any more as I have constant medications and appointments to pay for that are quite taxing.
I am 24 years old, I spend every day drowsy and every day in pain. I have a panic attack everytime I attend emergency or the doctor for pain relief as I am scared of how they will respond to me. I have no money and no nice things to show for the work I do. I have a relationship where we can’t be intimate because I end up in tears nearly every time. I have fortnightly physio appointments that involve internal work that is uncomfortable and unpleasant. I have no social life as I am too exhausted, in too much pain and can’t afford one.
Endometriosis is not a life threatening disease and can not be seen on the skin or on an x-ray. It is an invisible disease that is stealing life from women all over the world. It is an invisible disease that has stolen my life and as much as I am trying I am struggling to get back.
Every Monday night, I hop into bed with my pill container and a large box full of all sorts of medication being used to give me some control over my life. I sort out my tablets for a week at a time and every time I am finished I turn it over and stare at what my life has become. It is no longer a cocktail of medications, it is now a joke.
Last year I was left with no option but to leave the job I had struggled through six years of university to get. I had to leave my dream job. I had never considered working as a registered nurse in a GP setting but here I am Monday to Friday, 8.30am till 4.30pm. Don’t get me wrong, the job I have now has regular hours, great staff, amazing learning opportunities and amazing support when it comes to my endometriosis. I attend more days of work then I did working at the hospital and probably at any job I have had.
I lasted eleven months before needing to go back in for surgery. New adhesions and lesions everywhere and my right ovary attached to the top wall of my urethra. My specialist couldn’t believe what had happened inside my body in such a short amount of time and whilst using medication that should have assisted with slowing the growth of my endometriosis.
Before going into my surgery, my partner Jack and I made a massive life decision that has left us both excited and scared. The surgery was also to prepare my body for the next chapter in our lives. Since September of 2017 we have been trying to conceive with assistance and amazing ongoing support by my specialist. The plan was that we needed to fall pregnant as fast as we could which has meant 1-2 times monthly having internal scans, injections to time ovulation and hormonal medication to increase ovulation.
On top of the stress involved in trying to conceive quickly, I have gained a lot of weight, our relationship has been put to the test and my pain has been at an absolute all time high requiring 20-30 tablets plus a pain patch that releases constant analgesia. Jack and I have been advised that we need to start looking into IVF (another expense thanks to my body). It is hard hearing of friends falling pregnant. I will always be happy for them and support them but it is hard once I have a moment to myself, because I remember that this is going to continue to be a very hard journey and potentially could never happen for me.
A lot has happened in the last twelve months, my endometriosis has almost stolen or effected every aspect of my life in some way but no matter what, the amazing people that surround and support me are always there to hold my head up and make sure that each day contains a smile.
Endometriosis can be difficult to diagnose and has a wide range of possible symptoms. If you think you may be suffering from endo visit your GP. There are heaps of great gynecologists working in both the public and private healthcare systems who they will be able to refer you to.
Don’t forget how important it is to get regular pap smears and sexual health checks.
Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.