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

The beginning of my journey started at age 11. I experienced debilitating pain and heavy bleeding and clotting every month. I was unable to move for the first couple of days each month, regularly passed out from the pain and was sick and weak for one week each month. My symptoms were constantly dismissed by doctors as me being dramatic, a hypochondriac and eventually my parents began to believe the same which had significant long term effects on my mental health.

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

From the age of 14 I attended my local gp begging for help on an almost monthly basis and was again dismissed and given strong pain medication including naproxen, told to use how water bottle, take warm baths and exercise. As my symptoms grew increasingly severe I was put on the pill which did not make any difference to the pain but did make my periods lighter, however I experienced extreme side effects and my mental health became unmanageable. I left school at age 16 as I was unable to continue, my pain was severe 2 weeks of of 4 during my cycle and ovulation with back pain and pain down my left leg. Around 17 years old I demanded to be referred to gynaecology and was eventually seen- I was told at this time that I was too young to have such severe symptoms and that I must have a very low tolerance for pain but was however put on a waiting list for a laparoscopy and also put on the depo-provera injection. This almost completely stopped my period, I did continue to get cramps monthly but they were mostly manageable and I was able to attend collage and get a job. Eventually I underwent surgery and was diagnosed with stage 4 / severe endometriosis around age 20.

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

I was overwhelmed, although I was confident in receiving the diagnosis I was shocked at the severity of my condition from what I had been told for years from doctors. I was relived to be proven right and not seen as dramatic. My family were supportive from this point on having felt guilty for their lack of support and dismissiveness throughout my life . However the mental implications of the journey to diagnosis have remained with me and have significantly affected my relationships with my parents and trust in doctors.

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

Today after 2 surgeries endo continues to impact my life in many ways I continue to experience debilitating pain for the first 3 days of my cycle and pain during ovulation although I have grown mentally and physically stronger and am able to manage for the most part with medications, heat therapy and tens machine. My pain is located in my lower abdomen my lower back and down my left leg, I also experience extreme mood swings, hormonal acne, bowel and bladder issues, bloating and fatigue. I have recently began taking low dose monjaro and it has had a surprisingly positive impact on the severity of pain. However I have also recently experienced liver failure due to the volume of pain medication I have to take and the length of time I have been exposed to it .

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

The pain I can only describe as intense and debilitating. The physical challenges come from being unable to carry out daily activities while experiencing severe symptoms

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

I do have good days, days where I am almost completely pain free, where I can enjoy work, study, walks and the gym. Spending time with my friends and enjoying life.

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

Endometriosis has pushed my education back several years, the later years of my schooling were so unmanageable that I was unable to stay to complete final exams. However now 30 years old I have finally completed my BA degree and am looking forward to continuing to a masters degree through distance learning

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

Financially I have suffered from loss of wages during flare ups however I have been lucky to get a good job with understanding employment which has allowed me to continue to work through the worst of the condition. Unfortunately access to care in Scotland is not good, with extremely low waiting lists and only unaffordable private options. Many gps are still undereducated in endometriosis and continue to be dismissive around the condition in my experience.

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

Navigating the health system has been like fighting a loosing battle, I have had to argue, beg and demand and make threats of official complaints before receiving any support

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

Surgery was beneficial for me although the minor relief was only temporary lasting less than a year before severe symptoms returned, I was given no option but to go on hormonal birth control treatments which negatively impact me in many ways, which I had to lie about taking in order to get my second surgery. Through research I have found some helpful information including the use of tens machines m, reducing the need for heat and further damage to my skin. Diet and exercise changes and most of all the introduction of low dose monjaro has made the biggest impact so far for me personally.

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

Difficult, it can feel very lonely and overwhelming when you are suffering and can feel the judgement from others due to lack of understanding

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

I have felt dismissed and not believed for 20 years, although diagnosis definitely helped with this. It continues to be an issue. I am lucky to have an extremely supportive partner who has helped me through the worst and supported me physically, mentally and financially through the hardest points of the condition

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

Since a young age the impact of endometriosis has had a catastrophic impact on my mental health, I am only now beginning to understand how significant it has been and taking steps to address this and work towards healing

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

As a child and throughout my teenage years I developed a deep hatred of my body, I developed identity issues and grew increasingly critical and disgusted with myself. The last few years I have began to undo some of the damage and slowly I am developing respect for my body and developing feelings of connection and trust for myself

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

I think endometriosis alongside many invisible illnesses causes significant challenges in relationships with family and friends, I have experienced many people through my life tearing me down and labelling me due to my illness and although some of these relationships have mended the damage inflicted can never fully be repaired. My dating life was extremely difficult I was unable to be intimate for the majority of my life due to the pain and the mental pain I experienced and verbal abuse I received has been extremely traumatic

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

Endometriosis prevented me from having any sexual relationship until well into adulthood. I was unable to tolerate any sexual activity and had to be sedated for smear tests, this is obviously a deeply painful experience and one which remains with me today

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

I am now at a point in my life when I have to be serious about starting a family, something I deeply crave. I have began looking into options for support in my fertility however this is extremely costly and will be difficult for anyone struggling. I am undecided on whether or not this is something I can afford to pursue but hope that I can find an affordable option. In the near future

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

Physically – tens machine and monjaro. Although there is not much research into the effects that or monjaro yet I have felt the biggest different having been on low dose for several months, I came off briefly due to another health issue and the increase in the severity of my endometriosis symptoms showed me just how much it has helped me.

Emotionally- having somebody trusted to talk to, online support groups and advocacy groups as well as taking time for self care and listening to my body and mind

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

I do not feel supported in my journey but now feel confident in my ability to support myself

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

I have not connected with anybody with endometriosis however I have read several forms and experiences and found the stories of others very helpful

How has your relationship with endometriosis changed over time?

Over time I have grown to respect rather than hate my body. I allow myself time to rest and recharge and changed my mentality around the condition which had made the world of difference

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

I don’t feel it is a priority in the uk at least, the nhs is so overrun it is unable to support any illness appropriately and there is still a lack of understanding or support available for woman’s health conditions

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

I feel there has been a positive shift in the media and hope this continues to impact change

What would you like more people to understand about endometriosis?

The pain is real and women are stronger than they appear

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

Mu biggest fear is fertility and becoming too old to conceive my own child