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Endometriosis Awareness Month: The realities of an invisible illness

Endometriosis Awareness Month: The realities of an invisible illness

#itsucks

Text: Redzhanna Jazmin


Image: Healthline
Image: iStock

In light of Endometriosis Awareness Month, we delve deep into this debilitating reproductive disorder that affects an estimated 176 million women worldwide.

Endometriosis was first discovered by Karl von Roitansky in 1860 and is known to affect at least one in 10 women of reproductive age worldwide (if not more), yet awareness of the disorder is only just recently gaining traction. You'll find out the exact details if you read on, but as Alexa Chung aptly put it, #itsucks.

Plus, Chung isn't the only prolific celeb who has opened up about having the disorder. Stars like Daisy Ridley, Halsey, Lena Dunham and even icons like Cyndi Lauper, Whoopi Goldberg and Susan Sarandon have all come forward about their struggles with endometriosis.

So, what is it?

Well, first things first, endometrosis is a debilitating reproductive disorder commonly characterised by the presence of lesions, growths and scar tissue on the uterus, leading to symptoms such as extremely heavy periods, extremely painful menstrual cramps, cramps between periods, painful bowel movements, painful urination, pain with sex, diarrhoea, constipation, nausea, bloating and infertility. Oh, but on the bright side, if you have it, it's also incurable. Yay!

Why don’t they know what it is? Why don’t they know how to cure it? Could it be to do with a gender healthcare bias? Also probably doesn’t help that “endometriosis” is the longest and most boring word to read. Thank you to @allontheboard for raising awareness about this debilitating disease that affects 1 in 10 women and yet on average takes 7 years to diagnose. Sorry if you have it, thrilled if you don’t and grateful if you’re a supportive partner, friend of family member to someone suffering with this invisible hellmare. I’m lucky because I felt much better after surgery but I know that’s not the case for everyone and may not be the case forever. Sending love to those in pain and thanks to doctors trying to help. ❤️

In endometriosis, the endometrial cells are ectopic. In simpler terms, the cells that line the uterus (and are shed every month as a period) are found in abnormal places in the body (i.e. outside of the uterus), usually on the surface of the reproductive organs or other pelvic organs. Each area with ectopic endometrial growths is called a lesion. The catch is that although they share the same cell lineage, the ectopic cells behave very differently from the eutopic endometrial cells, which leads to many of the symptoms that arise.

Further, scarring is caused by the inflammatory response resulting from the ectopic cells of each lesion bleeding with each period. These areas of scar tissue formation are called adhesions. With endometriosis, the lesions and adhesions affect the ovaries, fallopian tubes, the outside of the uterus and the lymph nodes, leading to the painful symptoms of the disorder. There are four different stages, as well as three distinct types of endometriosis.

Stages of endometriosis

Endometriosis Awareness Month: The realities of an invisible illness (фото 1)

Types of endometriosis

  • Superficial peritoneal endometriosis: The most common type, causes shallow, flat lesions in the peritoneum (a thin film of tissue that lines the abdominal cavity and separates it from the pelvic cavity).
  • Deep infiltrating endometriosis: The most painful type of endometriosis, with lesions infiltrating at least 5mm deep into the peritoneum.
  • Ovarian endometriomas aka ‘Chocolate cysts': Benign, blood-filled cysts that form as a result of the lesions and are usually accompanied by the other two types of endometriosis.

No one really knows how or why it happens, we just know for sure that it does. Countless theories from studies from 1955 and 1994, to more recent studies from 2014 to 2020 have popped up over the years.

The theories suggest a range of pathologies like 'your period blood flows up into your fallopian tubes instead of out the vaginal canal, leaks through the gap between the ovaries and fallopian tubes and then the cells in the period blood implant wherever they want' and 'signals in your body interact weirdly and make the cells on your peritoneum turn into endometrial cells'.

All are very complicated and have their own merits but really, no one can agree on one theory and everyone keeps contradicting each other so we don't really have any idea what's going on. What we do know, however, is that it exists, it's awful and it needs more awareness.

 

Why is it so underdiagnosed?

Well, firstly, 20-25% of endometriosis patients are asymptomatic (they do not show any symptoms).

Secondly, the symptoms for endometriosis are often mistaken for other disorders like PCOS. Thirdly, the method of diagnosis requires invasive surgery that patients may be reluctant to undergo; basically, they stick a camera inside your abdomen and have a little gander for some lesions.

Then, there's the matter of many women's health concerns being systemically patronised and ignored by those who are supposed to treat us. Branded as 'hypochondriacs' and 'overdramatic', it's no surprise that many women suffering from the disorder are only diagnosed much later in life (often only when they are trying to conceive).

We started trying to get pregnant when I was 31. We didn’t tell anyone, but knew it’d take a while because of #endo so wanted to get on it.Nothing happened & my health got worse. We kept trying for years. After #excision surgery, we started #fertility investigations. Everything was fine - ovarian reserve, egg quality, fallopian tubes, sperm quality etc. But doctors all recommended #ivfWe went along for the first few sessions but by that point my health was deteriorating again. No one cared when I mentioned this - their job was to get me pregnant, nothing else.We kept delaying starting IVF, something just didn’t feel right. ALL the doctors I saw told me to do IVF before any other treatment for my worsening pain & symptoms. Eventually we managed to get an #endometriosis specialist to see that fertility wasn’t the only end goal, & that maybe it wasn’t even logical to get me pregnant if I could barely get out of bed.This is when we decided to go ahead with more surgery. But also when I decided 100% that IVF isn’t for me.My husband & I had always talked about #adoption & we started exploring it for real. After a few sessions, lots of reading & meetings we made up our minds for certain.Adoption isn’t a substitute for having your own child. It’s a whole different thing entirely & we know it’s going to be so difficult. Even so, the decision to adopt came easily for me, & luckily for my husband too, who has been beyond wonderful throughout all of this.Once this decision was made, it was like a huge weight was lifted. We talk about adopting a lot & we’re so excited about it. We can’t start the process yet because my health needs to be stable first. But now I can actually focus on getting well. No pumping my body full of chemicals that might make Endo worse. No more monthly cycles of hope, then heart break. No more putting anything else above my right to live without daily pain.

Yup, you heard me right! In addition to crippling pain and general inconvenience, endometriosis can also potentially render you infertile. There are a few ways in which is does this. As explained in a 2010 study, one of the ways is by the distortion of the reproductive organs by scar tissue. Think of it this way—in severe stages of endometriosis, more scar tissue forms, leading to the more severe disfiguration of the reproductive organs.

In some cases, the shape of the ovarian-fallopian tube connection is distorted to the point that it prevents the release of the egg from the ovary into the fallopian tube, thus preventing ovulation and subsequently fertilisation.

Further, severe distortion in the reproductive organs can also make it more difficult for the sperm to navigate to the egg, reducing the chances of fertilisation. It doesn’t end there, but the take home is that there are a combination of factors that contribute to infertility with endometriosis.

Thankfully, there are ways to manage the symptoms, with some being more extreme than others. Firstly, for those with milder cases, taking non-steroidal anti-inflammatory drugs (NSAIDs) like aspirin or ibuprofen helps to manage the pain associated with the disorder.

It’s not a perfect solution, but at least it’s something.

Taking it a step further, hormonal birth control (including the pill and the hormonal IUD coil) prevents ovulation and, therefore, menstruation, which makes it useful in helping to manage the symptoms of endometriosis. As the saying goes, "you can’t get cramps if you don’t have a period," (though it may do nothing for the cramps that happen outside of your periods).

Of course, another thing to consider are the side effects of the pill, and also the fact that pregnancy cannot occur (it is birth control) so this probably wouldn’t be the best option if you were trying to conceive.

Further from that, there are two kinds of hormonal pill; combined (with synthetic oestrogen and progesterone) and progestin-only. The combined pill may not be suitable for everyone as the oestrogen could exacerbate the symptoms of endometriosis. As always, the best course of action would be to consult your doctor to find what works for you, as well as try a few things before settling.

A common non-invasive treatment for the heavy periods is the surgical ablation of the endometrial lining in the uterus, which helps to either reduce or stop menstrual flow by destroying the endometrial cells. Another common way to manage the other painful symptoms of endometriosis is the surgical excision of the endometrial lesions, a minimally invasive procedure that removes the ectopic cells at the site of implant. However, a lot of the time a patient may have to undergo multiple surgeries, and if their lesions are too far progressed their surgeon may not be able to clear all the damaged tissue.

Finally, in the most severe cases (for 12% of women with endometriosis), a hysterectomy may be the last option for treatment, where the whole uterus is removed and the cervix is sealed shut.

It certainly isn’t an easy decision to make, especially as it means that children by natural conception are not an option, but in cases like Lena Dunham’s where disease progression is so severe and surgery after surgery does nothing but lead to more pain, it can be the only choice.

Hope for the future

On the side of glass-half-full for optimists everywhere, the growing awareness around endometriosis has opened a lot of doors; more and more (and more) studies have popped up recently, with the object of finding better ways to understand, diagnose and treat the disorder. Although we are a long way away from a cure, it's comforting to know that we're even one step closer. 

That said, for the time being, #itstillsucks.

For more information on diagnosis and treatments for Endometriosis in Malaysia, or to get in contact with a specialist, click here.

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