Completely isolating because no one can see it. If I showed how I feel I’d lose my job and marriage. People say they care but can’t cope with listening or understanding what it can possibly feel like to always be in pain and know that the daily pain will increase around every period. To know there is absolutely nothing you can do about it because there is no cure or treatment that works for you.

What was the beginning of your endometriosis journey like before you knew what was happening?

Horrible pain in my stomach, fainting at school and feeling sick all during my period every month from when I was 14

When were you diagnosed, and what was your journey to getting diagnosed like?

I was 21 when I was diagnosed and had been seeing my GP for 7 years. My GP just told me it was periods and they hurt. I was started on several contraceptive pills over the years, all which brought more side effects than reduction in symptoms. My GP then decided I was seeking pain killers and was very dismissive. I went to A&E for a new abdominal pain and was diagnosed with appendicitis. They operated and after I was referred to Gynae because they found adhesions and said it was due to pelvic infection. Only after surgery at 21 was I diagnosed with endometriosis and my follow up consisted of being told to get pregnant

What did it feel like to finally have a name for what you were experiencing?

Validating. I really felt it was all in my head

How does endometriosis show up in your body and daily life?

Exhaustion to varying levels everyday. Pain everyday for varying times. Difficulty eating as that exacerbates the bloating. No social life because I have no energy

How would you describe the pain or physical challenges of endometriosis?

Completely isolating because no one can see it. If I showed how I feel I’d lose my job and marriage. People say the care but can’t cope with listening or understanding what it can possibly feel like to always be in pain and know that the daily pain will increase around every period. To know there is absolutely nothing you can do about it because there is no cure or treatment that works for you. It is debilitating when trying to even verbalise the enormity of that. It’s too hard to say never mind to hear

Do you have “good days,” and if so, what do they look like?

I used to have good days where I had energy, could play with my kids and not spend all day counting down to bed time again. I could enjoy life and not just struggle through it without anyone noticing

How has endometriosis affected your education, work, routines, or ability to make plans?

I don’t make plans anymore. Looking after my children, dog, family and work is all I can cope with

Has endometriosis had an impact on your finances or access to care?

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Dismissive. They don’t believe you. Despite a surgical diagnosis of endometriosis when I have seen my GP recently to get a new referral to see Gynae, I was told I should like at my diet first

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I am yet to find anything that really helps. My initial surgery damaged my pelvic nerve so I had chronic pain from that for a long time. When I fell pregnant with my first, I had to endure the pain of my adhesions tearing and was just told by my GP that it was good to get them separated and to rest if it really hurt. It was agonising

What has it been like to live with a condition that often isn’t visible to others?

Isolating

Have there been times when you felt dismissed or not believed about what you were going through?

The entire time. I have lost 1st and am now underweight because eating makes the pain so much worse. I haven’t even booked in with my GP again yet as I was so dismissed last time that I don’t feel emotionally strong enough to go and see them

What has the emotional or mental side of living with endometriosis been like for you?

Awful. I try not to think about it because it is all consuming when I do. I feel completely alone all of the time because of it

Has endometriosis had an impact on intimacy or your sexual life?

Yes, which has in turn affected my marriage. I go through with it as infrequently as possible as it brings on pain

Do you feel supported in your journey? Who or what has helped you most?

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

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