Do you have endometriosis? Signs, Symptoms and Treatments for an Incurable Disease.

What is endometriosis?

Endometriosis is an incurable, chronic condition which causes the inner lining of the uterus associated with menstruation to grow outside the uterus. The endometrial tissue can attach itself to surrounding pelvic tissues and organs causing painful adhesions and scar tissue to form. The disease has been listed as one of the 20 most painful conditions by the NHS, along with shingles, heart attacks and broken bones. So why is it still widely misdiagnosed and insufficiently researched?

Since 2018, I have had two laparoscopic surgeries – both of which required hours of angrily pitching to my doctors that I desperately needed help. When I was 15, I had been suffering with endometrial pain constantly for eight months. Multiple hospitalisations, painkillers and hormonal medications left me completely zonked out and still in crippling pain. When I finally managed to see a renowned gynaecologist after four months of waiting, I was told that I was simply “overreacting” and “making up the pain”.

The doctor attempted to refer me to see a pain psychologist and prescribed me antidepressants as a coping mechanism. I was devastated, frustrated, and confused. How could there be nothing wrong with me? Was this all a product of my imagination? A tonne of research and an insightful conversation with my Mum identified the most likely cause of my pain: endometriosis. A month later, I stormed into the specialist’s office with one thing on my mind: getting surgery as quickly as possible. The specialist hesitantly booked one for the day before my birthday – yay. I was satisfied and content.

Little did I know that I would indeed be diagnosed with severe endometriosis. The endometrial tissue was so immense that it exceeded my actual uterus in size, yet that’s not what pained me the most. When I was minutes away from anaesthesia, the specialist refused to be convinced, politely offering: “Would you like to stay in hospital overnight? I don’t think we’ll find anything.” Ouch. 

Misdiagnosis

The real answer to this question is that most people simply don’t know what it is and how it’s different from “normal” period pain. People experiencing endometriosis are told constantly by specialists that the pain is all in their head. As a result, there is a dearth of menstruators openly expressing and identifying their symptoms out of fear of being dismissed by the so-called ‘experts’. Nevertheless, a consistent medical de-prioritisation of endometriosis has led to 15 out of every 1000 hospitalisations among women aged 15-44 to be endometriosis related (2016-2017). In addition, another 2017 study indicated that 29% of endometriotic women demonstrated moderate to severe anxiety and 14.5% presented signs of depression.

Along with the social and mental impact, a failure to diagnose and treat endometriosis in the early stages has been attributed to severe health complications, including infertility, irregular menstrual periods, amenorrhea, ovarian cancer, and food intolerances.

In the face of such adversity, sufferers are forced to take it upon themselves to identify their symptoms early and self-diagnose. Laparoscopic surgery is the only way to medically diagnose endometriosis, and requires an impressive level of self-determination, self-trust, and painkillers. Yet, surgery should only be used as a last resort.

Is it endometriosis or “just period pain”?

The first step in diagnosis is working out if the pain you are experiencing is indeed endometriosis or “just period pain”.

Period Pain

Premenstrual Syndrome (PMS) encompasses a large range of naturally induced symptoms that occur prior to and during menstruation, resulting from the hormones oestrogen and progesterone. Many people experience moderate pain during their period caused by contractions of the uterus that lasts for the first couple of days of menstruation when oestrogen levels are high. This often follows PMS symptoms such as mood swings, acne and breast tenderness. PMS symptoms are usually treatable through period pain medications or the contraceptive pill. During PMS, your ability to perform everyday tasks should not be significantly restricted. If it is, this would be the first sign of abnormality.

Treatments for PMS

If you suffer from pain during your period, there are some strategies you can take to lessen the pain, including: using a heat pack, doing gentle exercises (such as yoga), complementary therapy (such as acupuncture), pain relief medications, the contraceptive pill or an IUD implant.   

Endometriosis

In contrast, pain from endometriosis tends to shift every cycle and can be present in the lower back, upper abdominal, bowels, bladder, and ovaries. People with endometriosis tend to experience chronic pelvic pain that “comes in waves” relevant to each stage of the menstrual cycle; pain does not necessarily occur exclusively around menstruation. It is common for sufferers to experience periods of severe pain resulting in physical impairment and hospitalisation. Additionally, sufferers can develop chronic fatigue, intolerances to foods (such as gluten and dairy), pain during intercourse, nausea, as well as pain with bowel or urinal movements.  

Treatments for Endometriosis

There is no singular way to cure endometriosis, however, there are some treatments available. Hormonal therapy, such as contraceptives, can be used to prevent ovulation and menstruation to restrict the growth of endometrial tissue. A laparoscopic surgery may also be undertaken to remove scarring and abnormal tissue growth. In extreme circumstances, patients may have their ovaries or entire uterus removed.

Some common self-care strategies for endometriosis at home include regular exercise, yoga, meditation, pain medications, heat packs, maintaining a healthy and balanced diet, psychological support, mindfulness, regular sleep and therapeutic treatments such as acupuncture. If you believe you are experiencing endometriosis, above all it is imperative that you speak to a gynaecologist to explore possible treatments.