My name is Loren. I'm almost 30 and live in Northern Ireland. I've had endometriosis symptoms from as soon as my periods started. I had painful, heavy, lengthy periods with painful bowel movements. I remember googling my symptoms at 17, and was almost certain that's what was wrong. I attended GP appointments countless times and always had my symptoms dismissed and left with oral hormonal contraceptives, which never alleviated my symptoms. Over the years my symptoms got worse. I eventually paid privately and got my long awaited endometriosis diagnosis.
I had a laparoscopy in March 2023 with no relief from my symptoms which had progressed to chronic pelvic and lower back pain, pelvic pressure, fatigue and recurrent UTIs, along with my heavy, painful bleeding. I revisited my private consultant 9 months later. He confirmed I also had adenomyosis. I'm currently in a medically induced menopause with Ryeqo tablets.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
My symptoms started as soon as I began my period. I remember periods being extremely heavy, painful and lengthy whilst at school. I wasn't diagnosed until I was 28.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My initial symptoms were heavy, painful, lengthy periods with painful bowel movements. Over the years my symptoms progressed to irregular bleeding, bleeding for up to 6 weeks at a time. Over the last couple of years my symptoms have progressed rapidly to chronic pelvic and back pain, pelvic floor dysfunction, fatigue, recurrent UTIs.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
My diagnosis process was lengthy and frustrating. My GP dismissed my symptoms for years. I've been told things like, 'It is what it is' or 'you just have bad periods'. I ended up paying privately and finally felt listened to and validated. I recieved my diagnosis through my private consultant.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
My symptoms and pain now affect my every day life. I find the things I always did so much more challenging now. This includes working, exercising, socialising. The list goes on. It's a challenge communicating my struggles to others as it's an invisible condition. I look young and healthy. From the outside my life looks normal and it's hard for others to understand.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My family, friends and partner are very supportive. They try their best to understand. They research my condition and treatments to support me the best way they can.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Care in Northern Ireland is very limited. There are no trained excision surgeons in Northern Ireland and no endometriosis specialists. There are consultants with an interest in the condition. But this does not provide adequate care.
My private consultant is very attentive and I've trusted him more than any other medical professional before. It is frustrating for women that they have to pay privately for treatment and care that should be provided for them by the NHS.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
All areas of my life are affected by endo. My relationship, my career, my hobbies including exercise.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Unfortunately I haven't yet found anything effective in managing my pain. I use NSAIDs for pain relief, exercise when possible, use heat on painful areas. I take different supplements to support a balanced diet. I go for regular holistic therapies including reflexology and accupuncture.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Hormonal contraceptives have never alleviated my symptoms. I'm currently in a medically induced menopause which has not helped to alleviate my symptoms as of yet also.
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What do you wish you knew earlier in your journey?
I wish I had of opted for private treatment sooner in my journey.
have you found the endo community to be helpful throughout your journey? what does community mean to you?
The endo community are very supportive. The endo NI group runs monthly online and face to face meetings and are a very helpful and welcoming community.
Are there any misconceptions about endometriosis that you've encountered?
Misconceptions include endometriosis being 'bad periods', a solely reproductive disease.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
I would advise someone who suspects they have endometriosis to push for answers and not give up after dismissal from a health professional. You know your own body and you know when something is wrong.
For anyone recently diagnosed or struggling, reach out to online communities and local support groups. I'd also advise to do your own research.