What is endometriosis?

You’ve probably heard it mentioned, but what exactly is endometriosis? The endometrium is another word for the lining of the womb that gets shed every month as period blood. Endometriosis is a condition where tissue cells similar to the type that grows inside the womb starts growing elsewhere in the body. These cells bleed as a reaction to the menstrual cycle every month, but as the blood is unable to leave the body it can cause a lot of serious pain, inflammation and the formation of scar tissue.

Women from our #wombstories archive project have described it like “a demon tearing its way out of my pelvis” and “an elephant wearing stilettos, stomping on my womb”.

The misplaced tissue is often found growing inside the pelvis, around the ovaries, fallopian tubes, on the outside of the womb or in the area between your rectum and your womb. It can also be found on the bowel, the bladder, and in some rare cases in other areas of the body such as the lungs, the spine and the brain [1].

However the effects that it can have aren’t just physical. “For me, endometriosis has taken its toll both mentally and emotionally”, one woman told us. This is especially difficult given the various social distancing measures in place, which has made getting access to treatments more challenging than usual.

Your period and endometriosis

When you’re on your period, the body instructs all endometrium tissue to start shedding. If you’ve got endometriosis, the tissue outside of the uterus doesn’t have anywhere to bleed (unlike period tissue, which comes out through the vagina with your flow). As well as inflammation in the surrounding tissue, scarring and adhesions (which is thin scar tissue-like structures that can fuse organs together almost like glue), endometriosis can also lead to super heavy periods. 

It drove me crazy. I wondered how it was possible to be so sick all the time, all these symptoms happening at once.

What causes endometriosis?

The cause of endometriosis isn’t currently known. There are some theories of why endometriosis might happen. It could be down to genetics, as the condition seems to run in families, and affects certain ethnic groups more than others. There are also issues that put you at a greater risk, like a history of pelvic infection or something known as retrograde menstruation. That’s a condition where your period blood starts going ‘backwards’ – rather than out of the vagina, it flows back through the fallopian tubes and into the pelvic cavity. This blood contains endometrial cells, which then stick to the pelvic walls and to other organs, where they continue to thicken and bleed during each menstrual cycle. Other theories include endometrial cells spreading through the body in the bloodstream or lymphatic system, and problems with the immune system. [2]

How is endometriosis treated?

Although endometriosis is a chronic condition (which means it persists for a long time) there are ways to manage it. Over-the-counter anti-inflammatories, like ibuprofen, can be used to manage pain, along with home remedies similar to what helps period pain. The combined contraceptive pill or hormonal IUD can help too, by lowering oestrogen levels in the body to stop or release endometriosis growth. These methods also stop eggs from being released, making periods lighter and less painful [3].

In terms of surgical treatments, key-hole surgery to remove or destroy areas of endometriosis tissue may improve symptoms and fertility [4], although even surgery doesn’t “cure” endometriosis.  Some women may eventually decide to have a hysterectomy, which means removing the womb [5]and may also involve removing the cervix, fallopian tubes and or the ovaries.

Getting an endometriosis diagnosis

Endometriosis can come with many different symptoms and take years to diagnose – the average is 7.5(!) [6] Periods can be painful, heavy and irregular. Sex may be painful. And infertility can be an issue. Other symptoms can include – to name a few – pain passing urine or during bowel movements, pain perhaps in your lower tummy or back  outside of your period, extreme tiredness, and frequent thrush infections. Many women have several symptoms, and some none at all [7].

That’s why for some, a diagnosis can actually be a source of relief. As one woman put it, “I finally had a name for my pain. A name for the debilitating cramps that came every single month.”

The only way to fully diagnose endometriosis is through a key-hole camera investigation of your pelvic area. But before this point, you may have external examinations, internal examinations, scans and blood tests – or a combination.

Reaching out and getting support

Although women everywhere are affected by endometriosis, many aren’t getting the support they need. This is because the condition often goes undiagnosed or, when it is diagnosed, it’s misperceived as ‘really bad period pain’. As a result, women often feel like they’re being ignored and their pain isn’t being taken seriously. This can lead to feeling isolated and like you’re the only one.

But with 176 million women (one in 10) affected worldwide, you’re not alone [8].

Reach out to friends and family, even if it feels like an awkward subject. Talking about it will help, and you might even have people close to you with first-hand experience of endometriosis. Not only will they know what you’re going through, but they can help you to get the support you need from your doctor.

If you recognise the symptoms and suspect that you have it, book an appointment with your doctor or gynaecologist to find out more. They’ll explore ways to ease your pain and help you cope with the symptoms.

Understandably, current government guidelines mean waiting times for appointments and surgeries may be longer than usual. If it's difficult for you to visit your doctor at the moment, consider asking for a phone or video consultation instead.

You can also read more about endometriosis on the NHS website, or find support services and a community of those affected on Endometriosis UK.

Do you have personal experience with endometriosis? We believe that our #wombstories need to be heard. Watch our video, share your story and post on social using #wombstories.

[Sources]

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