What was the beginning of your endometriosis journey like before you knew what was happening?
I had extreme pain, I was vomiting and had my stomach running at the same time. My lips would turn blue from going into shock from the pain.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was fortunate enough to go to the gynae of two debilitating episodes, she didn’t gas light me she was great and I was treated fairly quickly.
What did it feel like to finally have a name for what you were experiencing?
It was relief and sadness at the same time because I had suspected it and the internet doesn’t help your confidence with a condition that is barely researched.
How does endometriosis show up in your body and daily life?
Honestly the inflammation, bloat, brain fog is awful.
How would you describe the pain or physical challenges of endometriosis?
The pain is excruciating, I have been knocked over by car I’d rather go through that again than the Endo pain.
Do you have “good days,” and if so, what do they look like?
No bloat, energy, focus and feeling “normal”
How has endometriosis affected your education, work, routines, or ability to make plans?
I was struggling with being extremely tired some days not able to get up for work and the depression that goes hand in hand with this is a vicious cycle
Has endometriosis had an impact on your finances or access to care?
If I don’t work I don’t get paid so most definitely
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My gynaecologist has been great
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Dieonogest comes with side effects too I was extremely depressed, low energy, water retention with weight gain, tired, I developed patches on my tongue even though my B12 was over, my ferritin was high from inflammation. Another doc put me on an experimental lowest dosage of GLP 1 and it’s been life changing- I feel normal, I have energy and a zest for life again. I have had two normal periods since starting and will go for bloods again in a few more weeks. I have no inflammation, no bloat, no water retention. My experience may be anecdotal but it’s been life changing.
What has it been like to live with a condition that often isn’t visible to others?
My partner was getting frustrated with me because I was tired all the time 🙁 I had no energy for anything around the house or even self care at times
Have there been times when you felt dismissed or not believed about what you were going through?
Not with doctors, I think I have been lucky but with everyday people who don’t have the condition they honestly thinks it’s a walk in the park
What has the emotional or mental side of living with endometriosis been like for you?
I had extreme depression and didn’t want to be alive
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
The dienogest equally ruined my body and I was at breaking point- I am a personal trainer – I struggled a lot with the dysmorphia but so much better now since off the medication and on the glp 1
How has endometriosis affected your family relationships, friendships, or dating life?
Been in a relationship for 13 years, definitely been fights around it and my low energy
Has endometriosis had an impact on intimacy or your sexual life?
My sexual drive was non existent
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I would like to have a child and I will try soon enough albeit I’m scared but still willing to try
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Gym, nutrition, good support system
Do you feel supported in your journey? Who or what has helped you most?
The GLP has helped an incredible amount I feel like the old version of me
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Very similar experiences for those around me who have it too
How has your relationship with endometriosis changed over time?
I initially was angry and sad but now I’ve learnt to cope and manage
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I feel like glps are not explored enough and medical trials should be starting, mast cell activation, EDS, homocysteine levels and MTHFR gene testing should be done for every patient
How do you feel endometriosis is represented in society or the media? What would you like to see change?
More research, answers and proactive solutions as opposed to what’s currently available
What would you like more people to understand about endometriosis?
It’s multifaceted, it’s a parasitic relationship with the body, it needs better medical care
When you think about the future, what fears, concerns, or hopes do you have?
I pray for a glp 1 tablet targeting Endo perhaps a dual therapy tablet with progesterone or stem cell therapy for the condition
Is there anything else you’d like to share?
I hope my story can enlighten and help some people