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

Continuous miscarriages

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

After my 7th pregnancy luckily after 1 successful pregnancy

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

I still feel and felt like I was to blame losing all my babies! Was extremely hard emotionally as I was quite young and had no mother figure to support my journey

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

I have gone from being a chief executive of a charity to being a teacher to less the stress but then I had to give up work due to not being able to commit to the “in need- deprived-possibly abused” young people who I were teaching. I had a complete hysterectomy which was meant to help my day to day life but it only has caused more issues with my bladder, bowel and main arteries! I contracted sepsis and I have suffered from it ever since I had the surgery. I now can’t work. I can’t do daily activities as I sleep my pain away and can sleep for days

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

I have lost friends and family due to this illness as they think I make up my pain and suffering in terms of not being able to empty my bowel for weeks on end etc

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

I can’t plan anything because i don’t know if i will be ok one day or the next and am so hurt by letting so many people down last minute and them not understanding

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

I can’t get a job because I will not be able to keep the position. I have been self employed for over 15 years but had to stop working because I couldn’t allow the young people who depended and deserved consistency down. I am now classed as unable to work

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

I am now in extreme debt and I cannot afford to buy food because I have to pay my rent which is more expensive than the benefits I receive. I have a small appetite but I should be able to afford to buy at least the basics without having to apply for a food parcel

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

The surgeon who suggested the hysterectomy when I was 35 years old was put on sick leave and then retired from the NHS! I have been waiting 7 years for my surgery notes from the BMI hospital as they are not available for the nhs to view

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

I have accepted that I have a unique incurable illness but I only wish I was more aware of the risks associated with the surgeries I have undergone. I’ve had 7 laparoscopies and the hysterectomy and I got cancer in one ovary and now I’m waiting for a operation to remove the other ovary and un stick my organs that are fused together by the endometriosis that should have been cured by the hysterectomy lol I have the paperwork to say it’s extremely risky and I could die…. 3 times he has wrote it on my pre operation notes

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

Embarrassing and lonely

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

Yes which has resulted in extreme health issues

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

I am depressed and continually anxious! I’ve tried to take my life a good few times which I am extremely disappointed with myself because I have my 21 year old daughter to live for and I don’t ever want her to see or know that hard time I went through

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I have not allowed anyone to be part of my life because I am always waiting for surgery and don’t want to put my issues on anyone else! Everyone has problems to deal with without added pressure

How has endometriosis affected your family relationships, friendships, or dating life?

I’m close to my dad and daughter! Friends I have at arms length because I can’t be reliable anymore

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

I can’t remember the last time I was intimate as I used to pass out in pain when I was with my ex fiancé

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

I had that decision made for me when I was 43 and had the surgery a few years later

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Sleep is my only way of dealing with it daily

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

Absolutely not had any support and I know I have had the worst extreme advice to possibly get me off surgery lists!

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I have joined facebook groups and I constantly share awareness posts but every one is different and what didn’t help me may help others

How has your relationship with endometriosis changed over time?

I’m just oblivious about it now! I have a F@ck it bucket and that’s where any issues go because I can’t dwell on the things I can’t change. People have much worse issues than me I am just lucky I have my daughter

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

I am disgusted

How do you feel endometriosis is represented in society or the media? What would you like to see change?

It’s definitely getting more awareness than when I was 1st diagnosed

What would you like more people to understand about endometriosis?

That no operation is a quick fix and it is a real condition and illness that needs some recognition. I was put on pro stat injections 3 times that medically induced the menopause to prevent the endometriosis from spreading and now I’m facing the real menopause again with no help medically as estrogen makes endometriosis grow

When you think about the future, what fears, concerns, or hopes do you have?

My true fear is that my daughter has what I have but the difference is I will not allow her to suffer or just go along with the professional opinion

Is there anything else you’d like to share?

Life is hard but u get dealt with what u can handle

I just want it to be known that it is not in people’s heads or a bad period because I can’t remember the last time I had a period it was years before I got pregnant with my 21 year old daughter