Living with endometriosis: Patients share their stories to raise awareness for the condition

Patients, treated for endometriosis at University Hospitals Bristol and Weston NHS Foundation Trust (UHBW), are raising awareness of the painful condition, and its impact on their lives.

Two patients are sharing their experience of endometriosis, their fight to get diagnosed, and how treatment and help from UHBW’s accredited endometriosis centre has helped them live a better life.

Endometriosis can be a difficult condition to diagnose, with many people struggling to be referred for the necessary investigations needed to identify the condition.

It affects one in ten women.

Mia Harrison: I battled for seven years to be diagnosed with endometriosis, despite indescribable pain which stopped me living my life

Mia Harrison, 21, had been struggling with painful periods from the age of 12. Despite her pain becoming increasingly worse as she got older, and often finding herself unable to do the things other teenage girls did it still took seven years for Mia to receive a diagnosis of endometriosis.

Mia, a student at the University of the West of England, said: “I started having awful cramps from my first period. I would have things I wanted to do, but my body would not let me. All the nights I would get ready to go out with my friends and I would be in so much pain, accepting my fate and laying in my bed with my outfit and makeup on, crying because yet again my pain was trapping me in my own life.”

Mia made repeated trips to doctors, who would often simply prescribe her with very strong painkillers which would prevent her from going to school. Even scans from specialists, when Mia was 15-years-old, didn’t lead to a diagnosis of endometriosis.

Mia said: “I knew the pain I was experiencing every month was not normal. Bed-bound for days on end, throwing up, fainting, extreme pain, I felt as if I was going crazy and not being listened too when a handful of different doctors were telling me the same thing and always leaving feeling like I was being dramatic, or that my pain tolerance was lower than every other girl I knew.”

Taking her health into her own hands Mia started to research symptoms and soon began to learn about endometriosis.

Endometriosis is an often-painful condition in which tissue similar to the inner lining of the uterus grows outside the uterus. It most often affects the organs of the pelvis, including ovaries, fallopian tubes bladder and bowel.

Endometriosis tissue acts as the lining inside the uterus would — it thickens, breaks down and bleeds with each menstrual cycle, but can’t leave the body like a normal period. Surrounding tissue can become irritated and form scar tissue. Bands of fibrous tissue called adhesions also may form. These can cause pelvic tissues and organs to stick to each other.

After a particularly painful flare-up led to a trip to Accident & Emergency, Mia consulted another specialist and asked for them to consider endometriosis.

Despite being told she was almost certainly too young to have endometriosis, as the pain got worse Mia decided to seek out another specialist.

This time she had a laparoscopy, a keyhole surgery where a camera is inserted into the abdomen.

After coming round from the surgery Mia was told she had Stage Three endometriosis, with signs of the disease on her ovaries and bowel.

Since her diagnosis Mia has tried five different contraceptive pills and two coils to try and alleviate her symptoms, but nothing worked.

She also had two laparoscopies to try and remove endometriosis and scarring, but neither of them changed her level of pain.

Mia said: “I was disappointed that neither surgery changed my pain. Feeling frustrated that even with the most extreme options I took, it relieved little to none of my pain. Wishing for other options and something that will work, feeling like you are trapped with nothing helping when you have tried everything is mentally and physically exhausting.”

After moving to Bristol for university Mia was seen at University Hospitals Bristol and Weston NHS Foundation Trust (UHBW) endometriosis centre and chose to enrol on their Pelvic Pain Management Programme.

Deborah Panes, UHBW Endometriosis Advanced Nurse Practitioner, who is based at St Michael’s Hospital had contacted Mia about the programme, which is hosted at UHBW’s Central Health Clinic.

The programme helps people diagnosed with conditions, like endometriosis, which cause chronic pelvic pain and helps them understand the mental health impact of living with a long-term chronic condition as well as offering them practical advice on how to deal with pain, helpful changes to your diet and how to manage relationships.

Mia said: “I still struggle with my symptoms daily. The littlest of tasks can feel like climbing a mountain. But, honestly with the things I have learnt and a little group chat of support it has made me realise we are a lot stronger than we think we are, and it’s normal to have highs and lows.  I am so grateful for this programme. After years of being dismissed by healthcare professionals or being made to feel like I am visiting too much, complaining for no reason and being loaded with pills and shut down, to go to this programme and be listened to by healthcare professionals, for them to know my name, understand, listen, and ask questions, it was the first time in my life I felt recognised as someone who is struggling and being offered help.”

Deborah Panes, UHBW Endometriosis Advanced Nurse Practitioner, said: “Mia, like many other women, has had a difficult journey to diagnosis. However, she attended every session of the pelvic pain management programme and really embraced the holistic approach to living with persistent pain.”

Mia is now working on an art for project for her university course, inspired by her experience with endometriosis.

She said: “I think people should understand that endometriosis is a whole body disease, it’s not just painful periods. It’s so much more than that. It affects every single aspect of my life, from my work, university, my friendships, relationships, my mental health.

“My art projects about endometriosis have been cathartic for me, I was inspired to create pieces which raised awareness and was a way to express myself. I think it’s a good way to show how I (feel going through this disability, because people can see visually what it feels like, even if it doesn’t make sense to everyone, people with pain will understand the artwork.”

Gijimol: After 10 years of pain and infertility I was finally blessed with my baby girl

Gijimol Joseph, an endometriosis patient who is also a UHBW nurse, was not diagnosed with the condition until she was 38-years-old.

In 2008 she began trying for a second baby but was diagnosed with hydrosalpinges, blocked and fluid filled fallopian tubes on both sides.

Gijimol had keyhole surgery to try and treat the hydrosalpinges, but the surgery was abandoned as the surgeon felt that the severity of the scarring made it unsafe to proceed.  

However, while working at UHBW Gijimol met Deborah Panes, UHBW Endometriosis Advanced Nurse Practitioner who advised her to call if she needed any help with managing her ongoing pain.

Following an appointment with the endometriosis team Gijimol had a laparoscopy by consultant Mr Oliver O’Donovan. The operation was a success, and Mr O’Donovan was able to remove the fallopian tubes.

In 2019 Gijimol gave birth to her second child.

Gijimol said: “I told Deborah I was pregnant and she and Mr O’Donovan even visited me when I had my caesarean section. I am blessed to have my baby girl after so many years of trying.”

Mr Oliver O’Donovan, UHBW consultant for gynaecological oncology said: “Difficulty getting pregnant is a side of endometriosis that probably doesn’t get as much recognition as the pain it may cause but can be equally as devastating. With the correct expertise, most of these couples can be helped. We are fortunate to have a fantastic multidisciplinary team here at the endometriosis centre at University Hospitals Bristol and Weston, including fertility specialists, and it is wonderful to see such happy, tangible outcomes. When doing robotic operating lists in the BRI I regularly bump into Gijimol as well as a couple of other patients of ours with similar stories who also work in theatres, and it reminds me why we do this job”.