What was the beginning of your endometriosis journey like before you knew what was happening?
Frustrating. Constantly questioning yourself and wondering if it is in your head.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed in 2018 aged 27 under laparoscopic surgery. To get to that point was sheer luck, I had been going to the GP years with no avail. This time, I saw a jr GP who said this is not right and sought permission to refer me for an ultrasound scan and to the Gynaecologist. She also suggested I download the questionnaire from endometriosis UK to take with me. I also took a calendar and highlighted every day I bled that year and turned it into a percentage (76%). Until that point I was told it’s just period pain, change the pill, countless STI tests despite not being sexually active.
What did it feel like to finally have a name for what you were experiencing?
Emotional. You get given a diagnosis but as there’s no cure and treatment plan you get left to carry out your own research.
How does endometriosis show up in your body and daily life?
It’s draining daily, whether that be excessive bleeding, fatigue or pain you can’t quite explain unless someone has experienced it. It affects what you wear, what you eat, how many hours you work, and I even go to bed when my 5 year old son does. I keep a heat pad in my office and have to sometimes wear loungewear to work, luckily I have understanding colleagues. I also have to heavily rely on my family to the point we live in the next street.
How would you describe the pain or physical challenges of endometriosis?
Draining.
Do you have “good days,” and if so, what do they look like?
Yes! Good days are a sigh of relief but often involve just the mundane, food shops, school runs but just without the pain.
How has endometriosis affected your education, work, routines, or ability to make plans?
I cannot work full time despite having a professional career. I go to bed early when others would be watching a tv series and I often have to drop out of social events.
Has endometriosis had an impact on your finances or access to care?
Yes, my private health will not cover the latest surgery as it’s too severe and would not cover the surgery before that as I had symptoms more than 2 years (it never goes away!). I am reliant on my fiance when really in my career I could be the bread winner.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
Mixed! My surgeon is amazing but communication poor as he’s stretched to the max. GPs do not understand and I have given up going to A&E when I really should as they will happily give someone with back pain morphine but not those with diagnosed endometriosis going through a crippling flare.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Mixed. Surgery works best but is short term. Lifestyle is good more for mental health, I take supplements just to keep the rest of me healthy not to necessarily deal with the endometriosis. Magnesium helps cramps but my go to is always a heat pad.
What has it been like to live with a condition that often isn’t visible to others?
Frustrating. You feel like you have to explain yourself.
Have there been times when you felt dismissed or not believed about what you were going through?
100%. One female GP asked me if it was ‘just a tummy ache’ after I’d spent the night in A&E and the gynae team sent me home to get an urgent referral to them from the GP…
What has the emotional or mental side of living with endometriosis been like for you?
You feel low and have to keep yourself motivated.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Very poor. Society praises flat stomaches but most often my looks pregnant despite not being able to have more children. It effects your skin and drains you of emotional energy so you do question yourself.
How has endometriosis affected your family relationships, friendships, or dating life?
A struggle. My partner is getting better but it’s frustrating for him. My parents have to take annual leave to look after me and my son during periods of surgery and recovery and friendships get lost or become distant.
Has endometriosis had an impact on intimacy or your sexual life?
Yes, the anxiety about pain either during or after.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I had to decide when I got diagnosed whether to have a child sooner rather than later as my hormone levels were so low that they expected menopause in the next few years. It took two years and a miscarriage still to convince a healthy baby.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Eating balanced, magnesium and giving yourself time. Acknowledging that it’s your body and it’s ok.
Do you feel supported in your journey? Who or what has helped you most?
Yes. My mum and sister are my everything.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I tried but it wasn’t for me, I like to look at the positives and found the support groups quote doom and gloom.
How has your relationship with endometriosis changed over time?
Yes, it’s become more platonic and at times a carer/patient relationship
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
GPs are awful. No clue unless their interest. My surgeon is amazing but can’t do what he wants without the funding and time, which the nhs has neither.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
Getting better, there seems to be a good understanding now. It’s talked about more but sadly little change.
What would you like more people to understand about endometriosis?
That it’s not just a bad period. It’s a whole body condition.
When you think about the future, what fears, concerns, or hopes do you have?
I hope there’s a cure so future generations do not have to live like this.
Is there anything else you’d like to share?
No thank you