My experience with endometriosis has been an absolute rollercoaster. It all started when I was 17 years old and suddenly started to experience extreme bloating and pelvic pain during my menstrual cycle. I experienced digestive issues such as constipation, nausea and occasional vomiting and fatigue. I didn’t feel like the lively, fun and active person I was before endometriosis. Due to the amount of pain I experienced especially during my period and heavy bleeding with large clots, I was unable to carry out most of my daily activities on most days. It was tough and it was much more of a challenge because I thought I was the only one going through this. I was in a dark place for a long time before seeking help from a professional. When I did eventually get help, I was wrongly diagnosed with IBS. I was unaware of how common it was for individuals with endometriosis to be diagnosed with gut issues as the symptoms manifest and present themselves in the body very similarly. It wasn’t even explained to me properly. I was just given a leaflet and told “Change your diet, lose weight, exercise and this should manage the symptoms.”
However, nothing worked, my symptoms were beyond worse and my periods became unbearable. I was told I may have generalised depressive disorder as I was at a really low point in my life at this time. I went to get a second opinion from another GP who thankfully listened and I had several tests and MRI scans which revealed a large dermoid cyst. After 9 months on the waiting list for surgery, the cyst grew to the size of a football and endometriosis was found during surgery. The endometriosis nodules were sticking my entire reproductive system together and fusing itself to my bowel which was causing all the gut issues. A year later, I had another surgery to remove an endometrium cyst and more endometriosis adhesions.
“Endometriosis affects women from all backgrounds and ethnicities but black women are also more underserved. Experiences such as feeling dismissed, your voice not being heard, being told you cannot be in that much pain because the scans show otherwise or being told it is all in your head are problematic.”— Cheyenne Morgan
Endometriosis affects women from all backgrounds and ethnicities but black women are also more underserved. Experiences such as feeling dismissed, your voice not being heard, being told you cannot be in that much pain because the scans show otherwise or being told it is all in your head are problematic. It is disappointing to see how repetitive this has become in society and the challenges black women have faced and are still facing today. Due to these challenges, some people do not want to talk about their health issues with a professional and get the help they need because they are often left feeling overwhelmed and alone in the dark. The lack of support really makes us vulnerable.
Due to my experience with Endo, infertility issues, PCOS and a Retroverted uterus were health issues that I encountered. However, after educating myself about managing my body and being patient with myself, I was able to conceive naturally and have a 17-month-old daughter now.
I had a really smooth pregnancy. Despite the horrendous morning sickness I experienced for the first three months, after 12 weeks I was given the all-clear and I didn’t experience any symptoms of endometriosis throughout my entire pregnancy. I was really worried about cysts developing alongside the baby in my uterus. I was worried about the pain I might experience if Endo decided to return while I was pregnant but because I was pregnant and not having periods, I was so grateful for these 9 months as it was a break for me to just relax and not feel tormented and tortured by endometriosis symptoms. I was also advised by my endometriosis specialist consultant to try and breastfeed for as long as possible as this really helped to suppress the symptoms of endometriosis as progesterone levels are much higher and Endo seems to only thrive when oestrogen levels are high.
To be honest, I am very scared to have another child. This fear is not about pregnancy but the fear of trying to conceive, thoughts about infertility, whether the endometriosis will come back or if the polycystic ovaries start to cause issues.
Since having my daughter, my periods are much more manageable. I do feel at times some of the endometriosis symptoms creeping back in slowly but I still try to remain positive, keep educating myself on what my body wants and needs and take things a day at a time.
It was hard in the postpartum stage for me with all the body changes, breastfeeding and low libido but I am getting there by being gentle with myself and allowing my body to heal and recover. I am finally at a stage where I feel like I am reconnecting with my body again as I did feel like I was in someone else’s body after giving birth. It was such a weird experience first-hand.
My baby was born healthy and well and the time has just gone so fast, she’s growing gracefully. I love having a miniature version of myself.
When I was diagnosed with endometriosis, I was just finishing up sixth form and about to start my university journey to train as a nurse. It was mentally draining as I was in and out of A&E so many times within a month and I could not work as much due to the severe pain and fatigue I experienced. I felt so alone at this time as I did not tell any of my friends about what I was going through. I just did not have the strength to. My family were really supportive and I am glad I had them around me during these difficult moments as I felt like I was at breaking point.
After I had both surgeries I qualified as a nurse in 2018. Due to my endometriosis symptoms, I have had to leave 2 jobs due to stage warnings caused by absences when I was experiencing very bad flare-ups. This was all due to managers and colleagues not having a clue about how reproductive health problems can cause havoc in people’s lives. I didn’t feel supported and constantly felt I was fighting a lost battle as I constantly tried to educate people about what I was going through. A lot of people comprehend how much pain and chronic fatigue I was experiencing during my periods and how this was affecting me both physically and mentally.
Endo hasn’t been a problem for me since giving birth as my periods have been much more manageable than ever before. I don’t bleed for 8-10 days like before and I am not experiencing the heavy bleeding or painful symptoms as much as I did previously. There are some months where I have felt that Endo is back, but I am due to have a follow-up this year so fingers crossed all goes well. I have been told by my Endo specialist that since I have stopped breastfeeding, there may be a chance of Endo returning. Nonetheless, I feel more confident than before due to the support system that I have, educating myself and listening to what my body wants and needs. I feel much more prepared.
I think that communication and listening attentively to patients is very key when it comes to reproductive health problems. Everyone’s body chemistry and make-up are different and we all experience similar and different symptoms relating to reproductive health issues. Health professionals just need to take time, listen and learn from their patient’s experiences. This can make a difference in patient outcomes and treatment plans.
As patients, we also have to educate ourselves as much as possible, as we can’t expect the healthcare professional to spoon-feed us. It is about educating ourselves about what causes these reproductive problems and symptoms and working in partnership with health professionals.
Health professionals need to also remember that the severity of the disease doesn’t always correlate with the amount of pain someone experiences. There have been too many occasions where individuals felt dismissed because they were being told it was all in their heads or they had a mental health condition. Just because the scans and tests show very little evidence of disease doesn’t mean that people are not going to suffer as much as a person with widespread symptoms. It all depends and everyone is different.
There needs to be a big improvement in the educational system, especially in relation to teaching about reproductive health problems from a young age. Such informative education in primary and secondary school would have been of great help for me and others as I wouldn’t have waited so long to seek help about my symptoms and normalised painful periods. Most importantly, if more young people suffering from symptoms are better educated about reproductive health, they will be more likely to get help early from a professional as they would be aware of the signs and symptoms and know when something is wrong with their bodies.
To Endo sufferers, I would say take things slow and take time to learn about what triggers your symptoms, what changes you could make with food intake, and do something you love that improves your mental health as I believe these factors play a role in hormonal health.
What works for you may not work for someone else so it is about personalising your own little toolkit for you. Educate yourself as much as possible but don’t become overwhelmed with all the information out there. It is all about choosing things that work best for you and your body and finding ways to manage your symptoms.