Acute pain, radiating pain, cramping pain, dull pain, aching pain, burning pain, stabbing pain, tingling pain, prickly pain, lower back pain, muscular pain, penetration pain, and abdominal pelvic pain. Pain is pain. Period.
Dear female chronic pain sufferer. You are not going mad, crazy, delusional, imagining it, exaggerating, hysterical or overreacting and dare I even write the words… just hormonal.
We do not imagine pain – we feel pain. I know you already know that of course! I want to tell you that as a woman if you experience any type of pain, visible, invisible or otherwise – your pain is real and I believe you. 100%.
You know your body and yourself better than anybody else. As women, we psychologically and intuitively know when something in our bodies feels wrong or is just not right. Your pain is real. Period.
Endometriosis: ‘It is a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility.‘ – World Health Organisations (WHO)
Why do I feel the need to validate your pain right now?
It’s simple. Two reasons.
Firstly, In Ireland, statistics show women take on average nine years to be diagnosed with endometriosis. Yes, you read that correctly. According to the Endometriosis Association of Ireland, it takes up to nine years for a diagnosis, with one in ten women experiencing the condition. That is up to nine years of living with pain, bloating, period pain and the many symptoms of endometriosis while also getting on with life, work, family and the daily grind.
The second reason I want to validate your pain if you are reading this is because my lived endometriosis experience is possibly similar to yours and the many other women young and old living with both undiagnosed and diagnosed endometriosis pain in Ireland. Sleepless nights, unknown pain, tears and countless walks home from health professionals feeling even more confused than when I walked through their doors. The psychological impact of living with long-term pain are life-altering.
Ours is a shared, familiar and profoundly exasperating experience of being ignored, overlooked or dismissed by health professionals, general practitioners and a healthcare system not adequate to meet the needs of patients suffering from the condition of endometriosis.
This is largely the problem. Awareness, assessment, diagnosis, treatment and management of endometriosis and the related conditions are not yet sufficiently or freely available and accessible in Ireland today. It remains largely exclusive to those with private health insurance policies leaving many women including those who are vulnerable and marginalised to manage and tolerate symptoms associated with endometriosis alone and sometimes in silence. A diagnosis is just the beginning of the endometriosis journey.
The unknown is scary. It is no wonder that many women with undiagnosed pain develop varying degrees of health anxiety. Tell me, who wouldn’t?
Long public waiting lists, misinformation online, lack of awareness and training and minimal multidisciplinary clinics and services around the country mean many women are seeking medical treatment and intervention abroad and through cross-border directives at their own expense.
Your pain is real. Period.
Like many endo sufferers, we become self-experts spending hours understanding the condition and how to self-care and self manage and it can be hard to get the balance right. However, self-management alone is often not sufficient which is why you need to keep pushing to be heard and listened to by your chosen health professionals if you experience ongoing pain or the symptoms associated with the condition. Other health conditions can mask endometriosis symptoms or exasperate the condition.
“The unknown is scary. It is no wonder that many women with undiagnosed pain develop varying degrees of health anxiety. Tell me, who wouldn’t?”
In my own experience getting to the root cause of my real pain, multiple antenatal hospital appointments and post-natal GP appointments, one abdominal ultrasound, and one transvaginal ultrasound all resulted in missed or undiagnosed endo diagnosis despite the chronic pain. Two years of attending various health professionals, chiropractors, physiotherapists and osteopaths to mention a few to help me manage and get to the root cause of my pain were unsuccessful. Not one health professional mentioned the word… endometriosis but each treated me in their own way for not endometriosis. There is still a serious lack of awareness around endometriosis in Ireland. While attending two separate GPs, each did flexibility tests months apart which I passed with flying colours. Thank you Yoga. It seems that being able to bend over and touch my toes meant I didn’t have the lower back pain I went for…. and certainly not endometriosis. Again, never mentioned.
Every single time, my radiating pain was the same, it never changed or magically disappeared. It wasn’t ‘just post-natal anxiety‘ as one GP suggested. No amount of ‘iron tonic and vitamin supplements‘ was going to treat my acute pain every time I carried my babies around all day long. No amount of ‘high-intensity training‘ to help me better manage stress as advised by another GP for my pain was going to fix me. Quite the opposite in fact. That piece of medical advice led to exasperating my undiagnosed condition to breaking point, unable to walk or get in my car on bad days. My problem was simple. My pain was real but for some reason, health professionals persisted in dismissing my pain.
Your pain is real. Period.
My experience mirrors the stories of my clients coming to psychosexual therapy with stress, fatigue, low libido, and overwhelm seeking to talk about their pain, feel heard and hope to learn how to navigate their pain in a therapeutic and holistic way. It also echoes the experience of the women, friends and family I talk to and listen to including endometriosis advocates around Ireland. I was one of the lucky ones, I got my private diagnosis in two and a half years. I finally found a consultant who said ‘Yes, I hear you and it sounds like you have endometriosis’. Hooray. Finally an answer.
You might be interested in reading... [The Vaginismus Blog Series ]
Women with chronic endometriosis and pelvic pain are being ignored. They are being left behind, dismissed, and rushed in and out of appointments advised to manage pain with over-the-counter painkillers and come back in a few more months when surgery and long-term pain management are crucial.
What are endometriosis symptoms?
Endometriosis is a chronic disease with severe and life-impacting symptoms. There is a range of symptoms associated with endometriosis disease which you can fact-check directly on the World Health Organisation and learn about the symptoms, impact and diagnosis here. These include pelvic pain, lower back pain, pain during a period, during or after sex and when urinating or defecating. Women may also experience:
- chronic pelvic pain
- heavy bleeding during periods or between periods
- trouble getting pregnant
- bloating or nausea
- depression or anxiety.
You might be interested in... [DEARG PODCAST: The New Irish Endo Podcast for Endometriosis & Adenomyosis]
11 Ways to get yourself heard in health appointments
Ask for signposting, guidance, next steps and onward referral at every appointment. Don’t be afraid to disclose your fears and self-diagnosis for discussion with your health professional. They may not have considered endometriosis for a variety of reasons.
- Keep a diary of your pain symptoms.
- Bring in a list of symptoms to your appointments.
- Learn and describe the different types of pain you are feeling.
- Track menstruation and period flow.
- Talk about how the pain is holding you back or restricting your daily activities and exercise.
- Write a list of the types of therapies or health practitioners you have been attending.
- Discuss how you are currently managing pain and how best to manage pain going forward.
- Rate your pain on a scale of 1 to 10 each day. 1 being low and 10 being high.
- Ask about treatment options or contraceptives that may help.
- Consider getting private health insurance even though there will be a wait period.
- Be assertive. Ask when you can have a follow-up appointment to track progress.
Your pain is real; don’t let anyone convince you otherwise.