Endometriosis: ‘The pain is so bad, I wish for early menopause’
Heather Condren has suffered from painful endometriosis since her teens. Now, as a mother of two, she struggles to find appropriate care, she tells Sarah Kiely Lavelle
Heather Condren first visited her GP for endometriosis at 17. Little did she know this would mark the beginning of a complex endometriosis journey that she is still trying to navigate 21 years later as a 38-year-old mother of two.
Endometriosis is a chronic condition in which tissue similar to the uterus grows in other areas of the body. In some cases, areas as far-reaching as the brain and heart can be affected.
It’s estimated one in 10 women suffer from endometriosis, and while their quality of life is greatly diminished, there is still no cure.
During her late teens and early 20s, Heather found herself in A&E several times with severely debilitating periods. At 21, she decided to have her first laparoscopy using ablation, which confirmed what she and her mother had suspected for years as endometriosis. Remarkably, there is no less invasive way to diagnose the condition.
Ablation is a technique used to essentially burn off endometriosis. When ablation is used, the tissue is destroyed — therefore, no biopsies can be sent to labs to be analysed.
It can also cause scar tissue to form post-op, which can create adhesions, cause further pain and affect the surrounding organs.
The jury is out on its effectiveness at removing the disease, too, as ablation can also lead to localised inflammation and endometriosis being left behind.
Laparoscopic surgery using ablation is a commonly performed surgery in Ireland due to a lack of trained excision surgeons.
Excision allows the endometriosis to be cut out at the root and is referred to as the ‘gold standard’ of treatment, especially in cases of more advanced disease.
Post-surgery, Heather experienced relief for about a year and a half, but her symptoms then returned so badly they dramatically affected her quality of life. “I missed so much college and could not function. I had about one week a month where I had some quality of life,” she tells us. During this time she kept being prescribed pregnancy or hormonal contraception, neither of which she wanted for her body at that time.
As endometriosis can be found anywhere in the body, and organs outside of the gynaecology remit can be compromised by the disease, the need for multi-organ excision specialists is imperative, yet it is something that is hugely lacking in Ireland. While recurrence after excision cannot be ruled out, studies have shown it has substantially lower rates than ablation.
So why are so many women having their endometriosis treated with ablation?
Endometriosis Ireland addressed the gaps in the Oireachtas last June, explaining: “There are still many issues; long wait times for diagnosis and treatment persist. Factors contributing to this are the lack of skilled surgeons, with only a small number trained in excision surgery, and insufficient dedicated theatre time for endometriosis patients.”
Fast forward to 2016 and Heather was getting married the following year and looking to start a family. However, she knew her endometriosis was back as her symptoms had progressively worsened over the years. Condren opted for a second surgery and was offered another ablation, where stage two endometriosis was diagnosed.
While endometriosis is a leading cause of infertility, it’s important to note that over 70pc of those with the disease will go on to conceive. This was the reality for Heather, and in late 2017 she became pregnant with her first child. However, by 2020 her symptoms had returned.
The pandemic didn’t help with appointment times and waiting lists. By 2021, Heather was pregnant again with her second child and had started her own floristry business.
Gynaecological wasteland
‘All along you’re told to have your babies, it will help... but I feel like I’ve been dumped off the care list and I’m unsure what my options are’
She went on to have another healthy baby, but it was noted at her delivery of baby number two that she had extensive scar tissue due to her previous ablation surgeries and C-sections. Now, Heather finds herself stranded in a gynaecological wasteland when it comes to her endometriosis care.
“I am somewhere between wishing for early menopause but not wanting a hysterectomy, as I have seen that have very serious implications for women. All along you’re told to have your babies, it will help and aren’t you lucky to have had them... but I feel like I’ve been dumped off the care list and I’m unsure what my options are,” she explains.
Our health service has a long way to go in improving treatment for endometriosis. It takes, on average, nine years in Ireland to reach a diagnosis and those delays cause enormous distress to those suffering from the physical, mental and financial fallout of the disease.
A spokesperson from the Endometriosis Association of Ireland went on to say: “We need more trained endometriosis specialists, within accredited multidisciplinary clinics, to provide effective treatment pathways including aftercare.’’
Awareness for young people assigned as female at birth is also critical — pain that stops you from doing your usual activities is not normal. Schools and parents have a part to play in providing information that informs and empowers, to avoid being dismissed at GP level or opting for treatments that may cause further trauma to the body.
While there is no cure for endometriosis, many can go on to lead very happy and normal lives with the right intervention delivered promptly to avoid the progression of the disease.
March is Endometriosis Awareness Month. For more info on endometriosis, see endometriosis.ie