What now ENDO?: Living with Endometriosis

This week’s Woman of the Week is Nicole Malyon, who has opened up about her endometriosis and speaks openly about the struggles associated with it.  Her story is raw and honest, and she hopes to help anyone else who might also be struggling with this disorder.

Disclaimer: The following is Nicole’s personal research and experience of the disorder.  If you feel that you have these symptoms, please seek out professional help.

Introduction

As women we can all relate to the habitual anticipation of waiting for our periods to arrive. The arrival of one’s period is linked to a wide spectrum of emotions; ranging from absolute joy to crippling fear, and in my case relief. In some cultures the arrival of a young girl’s first period is celebrated by the community, but for the vast majority it remains a social taboo of discussion; which women themselves have been taught, socialised, and trained to keep tight-lipped about for fear of being inappropriate. From the moment a first period arrives it is regarded in a manner whereby one should quickly, quietly, and discreetly manage it. Women are told that menstruation should in no way inhibit who they are, what they do, or how they function day to day- it’s the harrowing obligation that women are forced to bear. My earliest memory of this was my Grade 8 PE teacher ripping up a sick note that my mother had written to excuse me from swimming because of my period.  I remember her saying to me, “Nicole, a period is inexcusable, get dressed and get in the pool.”

Now, imagine that you were experiencing pain that resembled that of a heart attack, and severely losing blood at the same time. Would you quietly go about your day, or would you rush to a hospital and demand that a doctor see you immediately? We would all pick the latter right? But for women who struggle with a disorder called endometriosis they silently suffer with debilitating pain, because of the unrelenting stigma and dangerous normative ideals regarding female reproductive health. 

I have battled endometriosis for 15 years now, it developed shortly after my first period.  I was only 11 years old at the time.  Endometriosis has impacted a huge portion of my physical, emotional, social and professional life; and in sharing my story I hope it can help someone also struggling to navigate the tricky and painful terrain of diagnosing, accepting and treating this condition.  Before we continue I want to briefly outline what endometriosis is, what the symptoms are, and current medical treatments that are available at the moment.

What is Endometriosis?

Endometriosis is a painful disorder in which the endometrium, the layer of tissue which normally covers the inside of the uterus, grows outside and around the surrounding area. Most often this occurs on the ovaries, fallopian tubes, pelvic peritoneum and tissue around the uterus. However, in severe cases this can also grow beyond this and endometrium tissue can develop on the bowel and bladder. In rare cases it has been found on the diaphragm and lungs.

This disorder typically affects 1 in 10 women, and can begin as early as a girl’s first menstrual cycle. Commonly this occurs in women between the ages of 15-49. Menopause does not guarantee a resolution of the disorder, as in some cases if there is tissue damage, or scar tissue caused by the disease or operations, this can prolong endometriosis to well after 50. The estimated number of women affected globally by this condition is upward of 170 million and counting.

Causes:

There are multiple theories regarding what causes endometriosis, but it comes down to a variety of factors.  A woman may have a genetic predisposition and a familial history of the condition, or other hormonal imbalances. It could be caused due to immune dysfunction, retrograde menstruation (backward flow of endometrium in the womb, out through the fallopian tubes and into the abdomen), environmental factors, or lymphatic or circulatory issues. The list and causes are endless, but still it remains unknown as to why certain women are affected by this disorder and others are not.

In my situation it was ultimately caused by a genetic predisposition, trauma to my abdomen due to an injury, as well as a severe hormonal imbalance of oestrogen within my body caused by irregular oral contraceptive use. Excessive oestrogen within the body results in the development of abnormal reproductive disorders such an endometriosis, polycystic ovarian syndrome and primary ovarian insufficiency. There are a variety of cancers that women can develop too, such as cervical, ovarian and breast cancer.

Symptoms:

·         Severely painful periods

·         Pain during ovulation

·         Bloating

·         Dysuria – urinary urgency

·         Nausea and vomiting

·         Headaches

·         Low grade fevers

·         Irregular periods

·         Chronic pelvic pain

·         Pain during and after sexual intercourse

·         Heavy bleeding

·         Fatigue

·         Infertility

·         Constipation and problems with digestion

·         Emotional distress and impact on mental health

·         Hormonal imbalances

·         High Inflammation markers

Diagnosis and Treatment

The first step if you suspect you may have any of the above symptoms during your menstrual cycle - VISIT A DOCTOR ASAP!  I recommend visiting a gynaecologist who has a history of treating endometriosis, or can refer you to an endometriosis specialist. I put this off for years seeking treatment only through my general practitioner, which helped me deal with my immediate symptoms, but didn’t treat my condition as a whole. Your doctor may want to do an operation laparoscopically to determine if you have endometriosis, this is dependent on the severity of your symptoms and medical history.

In my personal case I was treated via hormonal treatments. I went on oral contraception at the age of 13.  My first ever pill I remember was Yasmin; during my teenage years this helped tremendously, but I still dealt with significant pelvic pain, heavy bleeds and fatigue. Essentially what the pill does is regulate your oestrogen levels to suppress endometriosis development. This can preserve your reproductive organs, but one must bear in mind that there are significant side effects to taking contraception for a prolonged period of time (see last week’s blog post regarding the Toll of Birth Control).  I had been on the pill for over 10 years before I decided to take a break and go off of it.  I did this without the assistance of a doctor, and boy do I regret that. Going off and onto the pill is no small consideration, so please do consult a doctor before making any such changes to your body. The side effects can be devastating if done incorrectly.

Other contraception forms are useful too, such as the Mirena, The Patch and even the Implanon, all of which have low levels of hormones in them that help regulate your body internally or through the skin. I have never tried these treatments, but know that they have been effective in treating endometriosis for some women.

There are numerous other hormonal treatments that can even stop the ovulation process in order to prevent the shedding of the endometrium monthly, thus reducing bleeding and build-up of endometriosis in the body.  This treatment is undertaken to treat severe symptoms, and medications such as Visanne are prescribed to women to preserve their reproductive capabilities. I do think that it’s important to note that it is healthy to have one’s period.  Menstruation is an indication of good health, fertility and balance within the body. So before considering stopping a natural process do seek medical advice from your doctor. Don’t just skip the placebo pills in your pack, and don’t unwisely take the advice of friends or family because they have tried a treatment and it worked for them.  Listen and take the advice, but ultimately get professional help.

Lastly, pain management is the biggest part of this condition. There is no cure for endometriosis and I’ve attempted hundreds of pain relief methods to help alleviate my symptoms.  Again, speaking to your doctor is crucial when taking pain medication, trust me a Panadol is not going to cut it if you are in severe pain.

Holistic treatments in conjunction with medical solutions are ideal. Ensuring your immune system is strong and your body is active and living a healthy lifestyle are paramount. Multivitamins, hormonal support supplements, and diet changes can all help contribute to pain and symptom management.  It’s all very personal and no one brush-stroke fits them all; you need to figure out what works best for you. I am currently on the path of supplementation in conjunction with hormonal treatment (the pill) to treat my endometriosis.

An unmentioned treatment for endometriosis, that is often overlooked, is the mental health and emotional aspect of this condition. Seeking the support of friends, family, and colleagues to help you on the tough days is so important. I have always advocated for mental health awareness and since my condition has worsened over the course of the last two years, I sought out therapy as a means of dealing with numerous issues, but also my condition. Having a space to discuss the struggle is essential! Online support groups, Instagram and Facebook awareness campaigns, even blogs such as this are great and a safe space to reach out and find a community of women all struggling with the same concerns.

What now ENDO?

I was recently advised once again to be kind to myself, a task I and so many others struggle to do daily. My socialization had forced me to believe that one should just “get on with it” and live through the pain. This dangerous belief is the main reason that I recently struggled through the most damaging 6 months of living, and incorrectly treating, my endometriosis. I want to leave you with this parting thought. How can we be kind to others, if we are not kind to ourselves first? Ladies and gents, whoever you are reading this, you are not weak, you are not less than, you are not broken. You are greater than the scars, cysts, bleeds, and pains. You are not your endo and despite the insurmountable pain and suffering you will endure with this condition, I promise you that there is a community of women who are just a click away ready to support you.

Be brave, because you’re an Endo Warrior!