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. Endometriosis effects a woman’s reproductive organs when cells similar to those that line the uterus are found in other parts of the body such as the bowel or bladder.
We have reached out to four women with endometriosis to share their stories with us.
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.
So I guess it started when my periods started; like many of us it was painful. Although we never had it before so we assumed it was normal. And ‘everyone got cramps’ so I guess it wasn’t really considered abnormal or really spoken about in length. Then, of course, pains all the time, and then general pelvic pains started, mid-cycle, a few days before a period then worse with a period then often not really ending before starting again.
Well at the age I was, that meant STD testing, relentlessly; almost monthly I was being tested for STDs or having ultrasounds. A few times they assumed cysts had burst; I think once it actually did, that was god awful! But mostly I was in pain, being treated like I was making it up or faking it. Passed on from doctor to doctor and no one really cared or listened. Perhaps they thought I was doing it for attention most likely. Oh yes, I enjoyed doctors and ultrasounds! And feeling pain for no good reason!
All tests, of course, were negative and inconclusive. This went on for roughly 5-6 years, and a few years later after a bad Pap test CIN 3, I was referred to an actual gyno, who diagnosed me with PCOS (polycystic ovary syndrome) at the same consult as my cone biopsy, then had to follow on to a Lettz procedure. I suppose then at least I assumed maybe why I was in pain all this time was due to my cycstic ovaries!
Well maybe not, by the time I got through college then started working I was on painkillers often, just to get through the day. I was always fatigued and felt run down.
After I started uni and finally after being admitted to hospital, unable to walk due to pain, for a queried appendicitis. They eventually did surgery to remove the appendix and during the lap they said ‘it was sticky in there,’ could be endo!
Within a year I was bedridden with periods no longer just painful― excruciating. I couldn’t attend work or uni on those days. I felt nauseous and tired and just pain! I couldn’t poop without crying most of the time, I would sweat and feel as though my insides were tearing apart!
I tried multiple contraceptives; most didn’t work and I bled all the time which meant I had pain all the time.
Finally, I saw an endo specialist, and after around 8 months he was convinced I likely had endo and we should do another lap to excise the lesions. Sure enough, when I woke up he said I had endo stage 2, and he had removed what he found. I think this was now almost 10 years after my initial pain complaints.
I wasn’t surprised I had it really, but I was definitely in denial following surgery that ‘it was gone’ not that it was a disease! It’s a chronic illness, it’s always there and the lesions they can regrow!
But the surgeons and doctors don’t tell you your life is completely and forever changed, and that possibly you will have limited to no relief from surgery. And that the rest of your health my deteriorate as well.
I think I had around 4 months minimal pains or minor relief with periods total, then heavier bleeding and more painful ones came. Then following another hospital admission I was told I also had adenomyosis and not to have any periods ’till I wanted babies’.
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.
Read Part 2 of our article about living with endometriosis here.