Kathleen is one of those brave women that refuses to be beaten down by anything. She turned her frustration and anger around and used that energy to educate herself about Endometriosis and in turn help many others through the EAI support system. Here is her story.
Occupation: Medical Laboratory Scientist, Acupuncturist, Chairperson Endometriosis Association of Ireland. I work in a busy general hospital laboratory with long hours and all my spare time dedicated to the EAI.
Diagnosed with Endo at: 20 after suffering since my first period at 12.
It all began when I was 12 –severe back pain – followed by days and nights of incessant heavy
bleeding. Yes, my periods had started and they resembled nothing like those ads from the TV!
Month after month this carried on 7 days of bleeding and 10 – 14 days of pain. I begged GPs for painkillers and tried to convince them that I was different, that this was not normal, that I wasn’t looking for time off school – that IT WASN’T ALL IN MY HEAD. Having in interest in biology and medicine from an early age, I read a family medical atlas from cover to cover. The one page I returned to was that of secondary dysmenorrhoea; one of the causes listed was endometriosis. It was my story on a page – but I wasn’t 30 – I was probably only 14 at the time. The painkillers prescribed did little to ease the pain – the intense pain that ravaged from my lower right pelvis, through to my lower back and down to my knee – and the unremitting uterine cramping that accompanied the heavy clotted flow. I eventually convinced my GP to prescribe the Oral Contraceptive Pill to help tame my menstrual cycle, the first months were bliss – reduced pain, and reduced bleeding. This reprieve was brief, breakthrough bleeding soon began and eventually I had gone through all the popular brands of the pill with little or no relief. I was certain that I had a problem; no one else that I knew suffered in the same way. Despite changing GPs many times, I was still no further forward. At 20 I demanded a private referral to a gynaecologist. My GP reluctantly agreed, but made it clear in the referral that she felt that nothing was wrong. I was struggling to live a full life, study was hard, work was difficult as I was on my feet so much and I had little or no social life. My days revolved around painkillers and hot water bottles. 8 years of suffering before my gynaecologist confirmed his suspicions by performing a laparoscopy – I had endometriosis! I was so happy – it had a name – it was real – I was not mad! Now to get down to some real treatment!
Most difficult thing about living with Endo: Unfortunately medical and some surgical treatments for endometriosis tend not to be very successful, and at the time of my diagnosis, the treatment given depended on how urgently you wanted to have children or a hysterectomy. I went through most of the medical treatments available: Continuous OCP, Provera, Zoladex. Some of these medications wreaked havoc on my body causing massive weight gain and horrendous mood swings while offering little in return. Some, like Zoladex (a GnRH analogue) gave me a break from the cycles that were ruling my life. I needed a longer term solution as many treatments are short term use only. I had been advised that the Mirena IUS was being used successfully for women with heavy menstrual bleeding and endometriosis. This, combined with surgical removal of the endometriosis deposits would give me a good chance at a pain reduced life. I had to travel to the UK in 2000 to have the Mirena and my subsequent surgeries.
Worst/most regular symptom: My menorrhagia is controlled by the Mirena, but I live with severe chronic pelvic pain that requires daily medication, TENS, heat and exercise to manage. Chronic pain can be difficult to manage, especially chronic pelvic pain for there are no specialists in Ireland.
Previous surgeries: Unfortunately 7 surgeries (including 2 excision) did not resolve my pain – which has now escalated to a chronic persistent pelvic pain. I take multiple medications including very strong pain killers (managed by consultant anaesthetist) on a daily basis. I am currently working closely with my medical team to assess the pain, nerve involvement and future management.
Complimentary treatments used: Everything from acupuncture, reiki, reflexology, homeopathy, herbs, healing etc.. I have tried them all! Each has their own particular benefit. Everyone will find one that works better for them in terms of helping the body to heal itself. Dietary changes are the simplest most powerful changes you can make. Pelvic Physiotherapy can also help release over tight pelvic muscles – but there are only a few pelvic physiotherapists in Ireland.
Helpful hints for others: Become a good Self Manager – take a Chronic Disease Self Management programme. Be an expert patient, learn everything you can about your condition, only you know your body. You must take control and look after yourself and be responsible for your own body. Embrace dietary changes, acupuncture, Mindfulness Meditation, exercise and your medical team – use all the tools in the box to become comfortable with your chronic illness and remember that you are not defined by it – rather you choose to embrace it to make you stronger.
Join the EAI – there is strength in numbers – and learn from the experiences of the women who have gone before you and from those who are currently suffering.
One positive thing to come from having Endo: So where is the silver lining, amidst the pelvic pain, the painful sex, the horrid periods and the body shape that doesn’t stay the way you want it? My silver lining came in the form of the support organisations, the Endometriosis Association of Ireland and Endometriosis UK. I trained as a support network volunteer, became an expert patient, trained in self-management and turned the anger from being ignored by the medical profession into something positive. I talk about endometriosis every day and always try to introduce it to everyone I meet. After all with 1 in 10 women, we surely all know someone who may be suffering in silence. I educate and support women with endometriosis to try and bring down the time to diagnosis (average 8 years in UK, 9 in Ireland ) and to raise awareness amongst the medical profession and the general public. Endometriosis has brought me suffering and pain, but has also brought opportunities to meet women from all over the world with the disease and to support them and their families and friends. So as I approach 28 years after that onset of suffering and pain – I celebrate the friends I have made and the knowledge and comfort I have brought to women living with endometriosis.