There’s a good chance you’ve already heard of endometriosis, thanks to the amount of media attention it’s been getting recently. And good thing, too. Because one in ten women across the world has it, and getting a diagnosis can take years. So here’s everything you need to know about this incredibly common condition.
What is endometriosis?
Endometriosis occurs when tissue from the lining of the uterus, also known as endometrium, finds its way outside the uterus. Sometimes, it’ll attach itself to other pelvic organs like the ovaries, fallopian tubes, or bladder.
Other times, it’ll land on the bowel or the diaphragm. It’s even been found as far away as the lungs and the brain! Clearly, endometrium likes to travel.
Of course, chances are you won’t have any idea this is happening. That is, until the pain starts. Chronic pelvic pain is hugely common and has a variety of causes. But endometriosis is definitely one of them.
Who gets endometriosis?
Literally anyone with a uterus can get endometriosis. It really is that simple. Now, most of the data available on the condition focuses on women. Which means we know that approximately 10% of women worldwide are affected by it. Just to put that into perspective, that equates to just over 740 million women.
It also means, though, that these statistics do not acknowledge that endometriosis can affect people of any gender if they have, or have ever had, a uterus. But we’re working on it, gang.
What are the symptoms of endometriosis?
As with almost all things hormone-related, the symptoms of endometriosis are super variable and highly individual. You might experience symptoms so severe that they interfere with your everyday life. Or, you may never experience any symptoms at all, and still get an endometriosis diagnosis. As you must have heard us say many, many times, everyone is different.
That said, there are some tell-tale symptoms you might experience:
- Long-term pelvic pain (usually worse during your period)
- Severe period pain
- Pain during or after sex
- Pain while going to the toilet
- Constipation, nausea, and/or diarrhea
- Fertility issues
- Heavy periods
The most common symptom of endometriosis is painful periods, thanks to the endometrial tissue going walkabout. But, depending on where that tissue lands, you might also get other, seemingly unrelated symptoms. As both bowel and bladder are often affected, you might experience constipation, diarrhea, painful bowel movements, or painful peeing.
And if they’re affecting your fallopian tubes or ovaries, on top of everything else, you might also have trouble getting pregnant.
Here’s how any of this is possible. Every month when you have a period, the endometrium sheds and you bleed. Period blood is a mixture of endometrial cells, blood, and other bits and pieces. This bleeding is usually fine because the blood comes through the vagina as it leaves the body. Exactly the way it should.
But if that blood gets misdirected somehow, to your pelvis or literally anywhere else, the results are incredibly painful.
What causes endometriosis?
The jury’s still out on what exactly causes endometrial tissue to travel. There are a lot of different theories, but little hard evidence.
Some of the theories include some sort of genetic interference, or periods leaking out of places they shouldn’t, including your fallopian tubes. Others point to the likelihood of immune system issues, or endometrial tissue somehow entering your bloodstream and hitching a ride to your lungs.
None of these theories fully explain endometriosis, though, so we still don’t know exactly what causes it. More than likely, it’ll be a combination of factors, including hormones.
When should I see a doctor?
Gang, this part is really important. If you recognize any of the symptoms we’ve talked about, please tell a healthcare professional. That’s job number one. And that goes double if your symptoms are impacting daily your life.
If you think you’ve got endometriosis, it might be helpful to keep a diary of your symptoms to take along when you talk to your doctor. You know, to help speed up that diagnosis.
The Endometriosis UK website has a diary you can download and fill in if you’re old-school. But the Hormona app is also a great way to record and track all of your symptoms on your phone or tablet. And yes, that was a shameful plug. Because it’s a great app.
What can be done to treat endometriosis?
Now, as with many, many hormone-related conditions, there isn’t a cure, as such. But there are several treatments that can help you manage your symptoms.
Once diagnosed, the treatment you’re offered will mostly depend on whether you’re trying for a baby. At its most basic, treatment for endometriosis falls into three categories: pain killers, hormonal treatments, and surgical interventions. But there are also other therapies available if you’re not into medical intervention.
For mild to moderate symptoms, pain killers like ibuprofen or paracetamol can be really helpful for the pain associated with endometriosis. It’s low-fi, for sure, but you can’t argue with the results.
Here’s something you might not have known. Ibuprofen is a non-steroidal anti-inflammatory drug (NSAID). These work best if you start taking them before your period starts, or, at a push, on the first day of your period.
As things stand, the most effective treatment for endometriosis is the Mirena coil, or a similar IUS. These small plastic devices sit inside the uterus and release progesterone over a period of around five years. They were originally designed as contraceptives, but have a huge effect on symptoms.
If you don’t like the idea of a coil, other contraceptives can also help treat endometriosis. These include Hormonal Birth Control, Implants, and the like. However, all of those treatments are, at the end of the day, contraception.
Which means if you’re diagnosed with endometriosis and you’re trying for a baby, none of these therapies are for you.
Instead, a surgical option might be a better fit. The most common operation for endometriosis is a keyhole procedure in which the surgeon removes that misplaced tissue.
In extreme cases, though, a surgeon might think that removing your uterus is the most appropriate treatment. Of course, this means that you won’t be able to have children, which is why a hysterectomy is only carried out in the most severe cases.
Surgery can be a fantastic treatment for endometriosis, particularly if your fertility is being affected. But as with all operations, there are risks. They include the fact that endometriosis often comes back, even after surgery. Also, surgeons can only remove what they can see, and they might not be seeing the whole picture.
There is, though, a reason they may not be seeing the whole picture. And that’s because there’s absolutely no relationship between how much endometrial tissue has escaped and how bad your symptoms are. No, really.
And never forget that where fertility is concerned, sometimes, the causes are many and varied, so surgery may not solve the problems.
So, what happens if, after diagnosis, you decide that medical intervention isn’t for you. Well, as it turns out, you’re in luck. Treatments such as acupuncture, reflexology, or osteopathy can work wonders for your symptoms. But please make sure you ask a qualified practitioner for advice about whether a treatment is right for you.
And, as always, good nutrition is crucial. Reducing the amount of red meat, dairy and wheat could also help you manage your symptoms.
Why does endometriosis affect my mental health?
Living with any chronic health condition, especially one involving pain, can be incredibly difficult. From anxiety and depression to sleep issues and stress, chronic pain can have mental as well as physical effects. Which is why it’s even more important that you’re taking care of your mental health
And as regular Hormonas will know, one of the best ways to help manage mental health issues is talking. To your friends, a doctor, a counselor, the dog, anyone you’re comfortable opening up to. Because it really does help.
What if my doctor doesn’t listen?
The most important thing to remember is that everyone experiences endometriosis differently and finding a treatment that works for you is key. But as we all know, even today women struggle to have their health issues, particularly period-adjacent ones, taken seriously by doctors.
Always remember that you are the best judge of whether something’s not right with you, and if your doctor isn’t listening, find one that will. We know, it shouldn’t have to be that way, but until things change, it’s up to us to make doctors listen. And trust us, one of them will listen.
Where can I go for more support?
A lot of countries have their own endometriosis support networks. This website has a list of organizations around the world that provide endometriosis support. And of course, there are communities like our very own, who’ll offer support, advice, and hugs. Because, and this is for real, you’re never alone.
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