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I actually found it really difficult to narrow down my story as I’m sure we all can, so much winds in and out of everyday life. 2018 was when I really started to research and advocate for myself, and through many doctors appointments and specialists I came to my diagnosis in 2022.
It explains so much but also brings a major burden, knowing currently that endometriosis is incurable and my symptoms can be sporadic or sudden and intense. Some of my medical history above also presents with complications in medication and procedures and with heavy medical trauma.
In addition to the above, I’ve also had several ovarian cysts though they have eventually resolved and I’m due for my third surgery mid this year. My left ovary is currently adhered to my uterus and will need to be removed and my doctor will do another sweep for any lingering or new endo lesions.
My work life has suffered, my mental health has suffered massively, and my social life has suffered. I am much more dependent on prescriptions and supplements and I’m still adjusting to a ‘new’ life that I am now living (heat pack on tow.)
My husband is my biggest supporter and advocate and all of this would be impossible to do without him! My family and friends are also wonderful but I think, as a lot of us do- we feel like imposters and often feel like we’re faking, ‘not that sick’, or don’t really have a disability.
Endometriosis is a dynamic disability and should be treated as such.
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?
Around 4 years to diagnosis, I was around 17-20 when symptoms began and I was 30 when I got my diagnosis.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Initial symptoms were painful periods, enough I make me faint and now I experience cyclical pain, pain days during ovulation, back pain, endo belly, fatigue, pulling and tugging in pelvis, nausea, thigh and hip pain, general body weakness, pain with sex, pain with bowel movements and pain holding my bladder and at time urinary frequency. Definitely gotten worse over time.
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?
Generally healthcare professionals do the bare minimum with some extra testing and imaging done. I got misdiagnosed with pelvic congestion syndrome, dysmenorrhea, just being unlucky and a tight pelvic floor.
I often got dismissed mainly from my work colleagues and managers, doctors seemed to believe me but they were not in a rush to do much more for me. My current doctor I cannot recommend enough though!!
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I still feel like I’m not believed a lot of the time and people still don’t recognise that a chronic illness means chronic! I often feel weak, like I’m just surviving and I will never be able to reach any sort of fitness goal. My pain depresses me, but also brings a sense of relief that I’m not making my symptoms up. I also get anxious and re traumatized when new symptoms pop up or my severity changes.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I do think they try to understand. I think they find it hard to imagine as they can’t experience the pain and fatigue and that I feel and that can be difficult to put to their own experiences. They certainly give me comfort on bad days and help me with appointments too. My husband is my rock and I love him beyond words!
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Much better now since finding my current doctor but I’d love someone closer to me that is aware of ALL my physical and mental challenges.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work and hobbies in particular
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Surgery helps to a point but my main treatments would be heat (heat pack or hot water bottle,) opioids, tens machine and sleep. Nothing specific lifestyle wise had helped fully- but I do try to exercise/walk when I can and stay to low inflammatory eating choices.
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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?
Birth control, normal NSAIDS, pushing through everything, doing too much in a day
What do you wish you knew earlier in your journey?
That it was all me that had to get this diagnosis- whilst writhing in pain and battling other health problems
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Absolutely!! 95% of things I’ve learned about endo and others experiences has been through the community. They mean everything- I would be beyond lost with those voices!
Are there any misconceptions about endometriosis that you've encountered?
It’s just a bad period, you were fine yesterday so why can’t you do things today, a baby will cure it, a hysterectomy will cure it, birth control will help, it can’t always effect you that badly, maybe it’s part of your mental health
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?
Take it day by day and keep pushing. Your symptoms and what you’re feeling are real and this is not just in your head. If you ever feel like no one believes you- know that I do!