IT TOOK 30 YEARS FOR ZARAH’S ENDOMETRIOSIS TO BE DIAGNOSED
...now she wants to raise awareness to help others
‘I was offered the coil and antidepressants’
‘So many have to travel overseas for treatment’
ZARAH Hartung has suffered with symptoms of endometriosis since she was 16 – but it was only in January, aged 46 and after years of pain and debilitating symptoms – that she finally got diagnosed.
The disease affects around 155,000 women or more across Ireland and for Zarah, like many others, it was a long road to diagnosis.
‘I have suffered with symptoms from the age of 16,’ Zarah says.
‘As the years went on, my symptoms progressed from painful periods to much more chronic, daily pain and chronic fatigue and anaemia and in 2007 my husband and I decided to try for a family but sadly I suffered a miscarriage.
‘We were absolutely devastated but we didn’t give up and we were eventually blessed with two healthy babies. A year on after the birth of my daughter I launched my own kids retail business but behind closed doors I continued to battle with my condition.
‘It just got worse, and I put it down to childbirth but my GP at the time was concerned and sent me off for an CT scan to check for endometriosis, but nothing showed up on the scan. To be honest I had never heard of this condition as it was never discussed during health education in school.’
Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and make it harder to get pregnant. Endometriosis can start at a person’s first menstrual period and last until menopause.
March is Endometriosis Awareness Month and new statistics have revealed that 81% of Irish women with endometriosis endure disruptive heavy periods, impacting lives and careers.
‘Endometriosis symptoms are hugely debilitating, alongside the underestimated social and psychological burden of managing them,’ Dr Ria Clarke, specialist registrar in Obstetrics and Gynaecology, says of the impact of the condition, which has pain, heavy periods and fatigue among its symptoms.
Irish supplement brand, Active Iron, has released survey findings that chart the everyday struggle of the condition for women. The research showed that the stressful physical impacts of endometriosis and heavy periods compounded to affect the mental health and interpersonal relationships of the 1,500 women surveyed across Ireland, Britain and the US.
While pain is the most common symptom of endometriosis, the aim of the awareness campaign is to spotlight the lesser-known impacts of endometriosis, such as heavy periods and fatigue.
For Zarah, the pain was so severe that it was manifesting as sciatica.
‘In 2018 I developed severe sciatic pain that came out of nowhere sending shooting burning pains in my lower back that radiated down both of my legs that came in cycles,’ she says.
‘At the time I went for an MRI of the spine but nothing showed up, so had endless amounts of physio and other therapies to try and get relief.
‘I was prescribed anti-inflammatories but got short term relief and during the lock down I started to develop foot drop that it became so painful to walk and I started losing my balance.
‘At this stage I knew something serious was going on and demanded to see a spine specialist and so another MRI was taken but again nothing showed up. At the start of last year, the pain became so debilitating that I was referred to have a nerve block and caudal epidural with the hope it would give me some relief but sadly it failed.
‘As the months went on I continued to battle with the pain but those heavy periods started to become closer together and later in the year I started passing blood in my urine and developed a pain in the side of my pelvis but at this stage I put it down to perimenopause because every test came back clear.’
Zarah, a succesful business woman and mother-of-two, felt functioning in her daily life had become impossible.
‘I set up another appointment with my GP to get to the root of this chronic pain once and for all and wanted to discuss about going on HRT to help with perimenopause, but I felt dismissed and offered anti-depressants and the Merina coil. I refused as I knew I was not depressed, I just wanted to be out of pain as I was just so run down and exhausted with it all and wanted my life back.
‘After several visits to the GP last year, he eventually discovered a swelling in my ovary and sent me for a CT scan of my pelvis and the next day the report came back with a suspected Endometrioma cyst in my ovary, but again my GP dismissed it and said it was a simple cyst and it should just go away and to come back in three months’ time.
‘Not happy with his response I demanded that he referred me to a gynaecologist in one of our main maternity hospitals but was then told I would have to wait nine months to be seen,’ she says.
‘Over Christmas things took a turn for the worse as the cyst had started growing at a rapid rate and was now twisting my ovary causing me to be in agonising pain that I started vomiting daily. I called two main maternity hospitals to see if they could take me in, but they said there was nothing they could do, and I needed to wait to see a specialist.’
At this point, Zarah, at a loss at what to do next, decided to get a second opinion.
‘I found an empathetic GP who knew immediately from the CT report that I needed a very specialist endometriosis surgeon urgently,’ she says. In the new year Zarah was rushed to Beacon A&E and had another CT scan where they could see the cyst in her ovary had grown to 4cm.
‘They referred me urgently to see their endometriosis specialist and I underwent a four-hour laparoscopic excision surgery,’ she says.
‘It wasn’t until this point that my surgeon discovered the severity of my condition and he explained after that it was the root cause of my sciatic pain that I had suffered for years. I was very lucky to have found an incredible surgeon who had so much empathy and compassion and with his skills he managed to remove all the endometriosis, the cyst and repair all my organs and save my life.
‘The sad reality is so many women have had to travel overseas for urgent treatment as Ireland just doesn’t have enough specialised excision surgeons and many have had failed surgery as many gynaecologists offer ablation or a hysterectomy which isn’t always the answer,’ continues Zarah.
‘And for many who don’t have private health insurance can be left waiting for over a year or more which is just not acceptable.
‘Early detection is key so if you suffer from very heavy painful periods or are dealing with perimenopause or menopause symptoms you need to be your own health advocate and do your research to find a health professional who will listen as no woman should have to suffer in silence.’
With the results of the survey, Active Iron wants to help start the conversation around endometriosis and menstrual health.
Common challenges for endometriosis sufferers and those experiencing heavy blood loss (menorrhagia) are stigma, diminished quality of life on account of pain and fatigue, and delay in diagnosis.
Endometriosis sufferers wait, on average, seven and a half years before being diagnosed, and many with menorrhagia may not even seek medical help, as they assume heavy bleeding is normal.
Almost 80 per cent of those surveyed say more should be done to raise general awareness of the potential effects on women who experience heavy periods.
Dr Sarah Murphy of St James’s Hospital, Dublin, said women don’t have to just accept heavy
periods as a normal part of being female. ‘If challenged with managing menstrual pain and fatigue, and not happy with the endometriosis advice or treatment from medical professionals, women do have options.
‘Firstly, they can insist their practitioner orders all appropriate tests, and advises them on all treatments available to ease symptoms, from pain relief to surgery.
‘And, secondly, iron supplementation will help with the fatigue that exacerbates low mood, lethargy and other symptoms,’ Dr Murphy continues.
‘By advocating for more awareness of endometriosis, and better ways to manage pain and heavy menstrual bleeding, we can achieve symptomatic relief, improve quality of life, and empower women to take control of their health and wellbeing,’ the obs and gynae special registrar says.
Rather than covering up tiredness and fatigue with quick fixes, a daily iron supplement can help women restore the energy loss associated with diminished iron, Claire Lynch of Active Iron, advocates.
‘Heavy periods are the main cause of iron deficiency in women of child-bearing age,’ she says. ‘Active Iron is clinically proven to increase iron levels by 94%, while avoiding troublesome side effects, giving more energy, an enhanced quality of life in the long term, and better overall health.’
For Zarah that wait for help is finally over but she is telling her story to help raise awareness and let others know they are not alone.
‘I was finally diagnosed with Stage 4 deep infiltrating endometriosis in my entire pelvis and adenomyosis, but it’s been a long battle to get answers as it’s such a hard disease to detect,’ she says.
‘For many it can take eight years or longer to get a diagnosis as it doesn’t always show up on tests.’