Spotlight

My Life in Chronic Pain: Endometriosis

By Hope Docherty

Endometriosis, for me, is forever striving to live like an able-bodied person due to the invisibility of the illness. It has taken me years to forgive myself for not always being able to ignore the chronic pain and simply rest when my body tells me I must.  

In medical terms: Endometriosis is a condition in which tissue similar to the lining of the womb starts to grow in other places such as the ovaries and other vital organs. There is no cure, but it is known that the illness is hereditary and can be the product of: hormone imbalances/ surgical scarring/ immunity issues. Symptoms of the illness include:  

  • Period Pain: irregular periods/ heavy periods, blood clots.  
  • Nausea: commonly misdiagnosed as Irritable Bowel Syndrome (IBS) causing bloating etc.  
  • Frequent urinating and urinary pain.  
  • Weak immune system presented in food intolerances, low blood sugar, low magnesium and iron.   
  • Chest pain/ shortness of breath/ shoulder pain/ rapid heartbeat.  
  • Severe fatigue- caused by the body repeatedly attempting to repair cells.  
  • Painful sex  
  • Infertility
https://www.instagram.com/p/CF2pTBRhxcD/
I have learnt the most and felt most supported within the online Endometriosis community by accounts such as this one.

Diagnosis

I have experienced all above symptoms except the last thus far. From the year my period began I found myself having one ÔÇÿnormalÔÇÖ week a month, where my symptoms were relieved because I wasnÔÇÖt preparing to menstruate/menstruating. As drained as I felt from these symptoms it took 10 years for me to be listened to. For an illness so common (1 in 10 people who menstruate), it takes on average 10 years for a diagnosis to be made. Within these 10 years I cannot count on my two hands the number of doctors I have visited. I have been misdiagnosed with IBS, Polycystic Ovary Syndrome and tried every single birth control there is. It felt as if doctors eventually were just throwing medication at me and sending me on my way.  

I will be forever thankful to my university doctor for listening to my pain that previous doctors had dismissed. Following several appointments, I was sent for two ultrasounds and a cervix examination. More than anything I am proud of the courage I had during this period. These appointments were my first away from home without the comfort of a family member picking me up afterwards. Through these examinations the discovery of cysts along my right ovary were found which my doctor concluded that with my symptoms was more than likely Endometriosis.   

I cannot write much more about my diagnosis because it can only be made certain through surgery. This intrusive surgery will show if Endometriosis is growing in any other of my organs to be removed. I have now been on the waiting list for this surgery for over 8 months. The NHS is already strained enough, and I am not hopeful my surgery will be any time soon. Without surgery or a cure there was not much more my doctor could tell me except the negatives. I was 19 at the time and a medical professional was telling me the probability that I will be infertile. You just presume you are fertile, so it is something you do not put much thought into. I tend to just state I do not want children when the topic arises now. I am open to adoption but have always dreamt of carrying my own child. It is just a gut feeling that I am infertile now, one I tend to ignore. Even if I did conceive, I would be terrified of passing this illness onto a daughter.   

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ÔÇÿJust a PeriodÔÇÖ

I have been belittled by this statement more than once, especially within the workplace. Periods have always been an unspoken topic where severe pain has been both normalized and dismissed. My worst experience was in a high-end retail shop where my manager spoke down the same words of ÔÇ£everyone has a periodÔÇØ to me. I did not understand why a woman twice my age would dismiss a teenager doubled over in pain crying. It took me fainting on tills to be sent home. After this incident I began using up my own holidays to take time off for when my period was due.   

The symptoms are always worse once IÔÇÖm menstruating, but a flare up can arise at any time. I nearly spent last Christmas in A&E due to a random flare up where much of the holidays were spent convulsing in pain in bed. Triggers of flares up are mostly dairy, gluten and alcohol. I have missed sports training, nights out, education… the list is never ending, due to this pain. It has gotten to the point where some forms of exercise such as abdominal workouts trigger inflammation on my cysts. I think much of my body dysmorphia and negative connotations towards food stem from my food intolerances and bloating caused by it. Alongside this, I have a constant hormone imbalance which appears upon my face as cystic acne. Throughout the years my acne has come and gone as well as my weight fluctuating with hormonal pills. In so much change to my appearance I have learnt I cannot look at it negatively, a few spots and some stretch marks will never bring me to hate myself anymore. Above all, I refuse to put my life on hold for an illness I cannot control. 

This lack of control also feeds into my personal life. I was quite late to lose my virginity so believed the pain I felt at first was completely normal. Women are taught to not find sex pleasurable within the public eye, so it was not shocking to me that penetration hurt. This pain is random, just like a flare up. The naiveness of myself is painful to look back on and I am so lucky to be dating someone currently who respects my boundaries when it comes to my illness. I hate to admit that past partners have not been so kind.  

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Hope

Currently, my hope manifests in hoping surgery comes soon and remaining appreciative of the support system surrounding me. Endometriosis is also entering into the public eye. British MPÔÇÖs this month called for ÔÇÿbold actionÔÇÖ from the government to support women living with Endometriosis which is incredible to see.┬á


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