What was the beginning of your endometriosis journey like before you knew what was happening?
The beginning of my endometriosis journey was probably when I was a around 11/12 when I got my period, it was so painful to the point I was vomiting, had leg pain that I couldn’t walk and passing out. After missing alot of days of school my mum took me to the doctor’s and instead of actually doing any examination or tests he just handed over the pill which did help back then I didn’t even know endometriosis existed.
When were you diagnosed, and what was your journey to getting diagnosed like?
I got diagnosed in 2022 the journey to getting diagnosed was horrible. In 2021 I literally had a lump ((which was ovian cyst)) sticking out my lower abdomen. I had two phone calls appointments the first one put it to constipation and gave me sachets to take when that did nothing I phoned again this time they said was Ibs and gave me tablets and guess what they did not work so I actually gave up with doctors feeling let down. It wasn’t till 2022 family and friends encouraged me to try again and thankothis doctor listened on the phone and told to come straight in and then all the test happened.
What did it feel like to finally have a name for what you were experiencing?
Finally having a name to what I was experiencing was a relief like I wasn’t going crazy there was something wrong with my body.
How does endometriosis show up in your body and daily life?
Endometriosis shows in my body with pain still on my period and off. Back pain, lower abdomen pain, bloating, constipation, calf pain, fatigue. Daily life feels like your constantly just trying to make it to the next day.
How would you describe the pain or physical challenges of endometriosis?
I would describe the pain of endometriosis as crippling it really does stop your life feels like you can’t even do the basic things.
Do you have “good days,” and if so, what do they look like?
My good days are when I don’t have pain for a little while but I know I’ll suffer for it later when I just try and enjoy the pain free moments.
How has endometriosis affected your education, work, routines, or ability to make plans?
Endometriosis affected my work alot as I kept having to take days off until I was not needed anymore, I am now my mum’s carer due to having stroke the same time I was diagnosed, we look out for each other. Sometimes I have to cancel plans because my body just fails me.
Has endometriosis had an impact on your finances or access to care?
It impacted my finances at the beginning due to not being able to work but thankfully my friend helped me apply for pip.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My experience with doctors as you read already have been bad besides the one that actually cared enough to see me. The specialist were okay they didn’t really do much to be honest. The health care system is kinda crazy I was left waiting for a long time and kept getting sent to different hospitals for tests and appointments which took a toll on my body.
What has it been like to live with a condition that often isn’t visible to others?
It’s very frustrating and depressing living with this condition because people just see you as normal person and expect you to be able to do what a normal healthy person does but that isn’t the case and even when you explain they just don’t understand.
Have there been times when you felt dismissed or not believed about what you were going through?
I have felt dismissed from the very beginning, I understand back in the day endometriosis wasn’t well know but to dismiss such extreme pain for a young female is ridiculous. I felt so neglected by the two doctors who just assumed my conditions without even seeing me in person, like is it because I’m a young person that they don’t care.
What has the emotional or mental side of living with endometriosis been like for you?
Emotional and mental for me has been soul destroying to be honest, my mental health hasn’t ever been that good but it just made it alot worse to the point every day I was having suicidal thoughts, I am on antidepressants now to try and help. Emotional I’m just drained because I’ve lost who I use to be.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Endometriosis has affected the relationship with my body a ridiculous amount. I use to be very active, slim toned body but now it’s just bloating everyday, putting in weight no longer being able to wear your clothes from before. I’ve lost the spark I once had for myself.
How has endometriosis affected your family relationships, friendships, or dating life?
My family are understanding, my dad was the one that really pushed for me to see a doctor and always checks in on me. My mum tries to care but due to her disability it soon becames about her. My sister just doesn’t care if I’m in pain or exhausted she still expects me to do everything in the house.
My friends are the most understanding, my best friend also has endometriosis so we know what it’s like for each other. My boyfriend is my little angel his helped me through this more then he knows and still supports me.
Has endometriosis had an impact on intimacy or your sexual life?
It has impacted my sexual life abit because half the time I don’t feel well enough or just too tired for all that. I’m thankful my boyfriend understands and doesn’t push me.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
Due endometriosis I lost my left ovary and my fallopion tubes, so family planning would be difficult but my boyfriend and I have discussed this if one day we wanted kids we will find a route to take or just adopt.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
My electric heat blanket ((use to be hot water bottle but it burst on me so now I’m scared)) it’s a small one so I can just focus it on my belly or back when in pain I find this sooths the pain.
Do you feel supported in your journey? Who or what has helped you most?
The only ones who truly supported me where my friends and boyfriend they always checked up on me, asked for updates after appointments, come visited my in hospitals.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Like I said before my best friend also has endometriosis. It’s kinda nice in a sense as we can relate to one another as well as be eachother support through it.
How has your relationship with endometriosis changed over time?
My relationship with endometriosis hasn’t changed there is no cure it is stuck with me for life, it is the thing that changed my body for the worst.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I’m glad endometriosis is getting more awareness in the media as it was a very unknown condition. I would like to see more things put in place in the work place for people with endometriosis. I wish they would also show the impact it has on daily lives as well as what it does inside the body.
What would you like more people to understand about endometriosis?
People should understand that disabilities can be invisible just because we seem normal doesn’t mean we ain’t dying on the inside by the curse that is endometriosis. They need to understand not to judge if we need a sit down more often or need to rest alot more then the average person.
When you think about the future, what fears, concerns, or hopes do you have?
For the future I fear that it means alot more surgery’s to fix the pain temporarily for it to just grow back. My hope for the future that someone finds a cure for it.
Is there anything else you’d like to share?
Endometriosis can affect any part of your body not just your reproductive organs.
Mine was slowly killing my left kidney which I nearly had to have it removed but instead had reconstructive surgery. Even if it feels hopeless keep pushing the doctor’s, the specialist, we deserve better.