Myths and Misconceptions of Endometriosis

Endometriosis and its Misconceptions: Get the Treatment You Deserve

Endometriosis is one of the most misunderstood conditions in the medical world, and a proper diagnosis is a must. However, this diagnosis doesn’t always come straight away…

Endometriosis is a painful condition, and one that has a history of being missed by doctors. The fact that the symptoms of endometriosis are so broad, and similar to lots of other diseases, has led to countless delays in diagnosis for women who have it.

Not only that, the myths and misconceptions surrounding endometriosis have made both diagnosis and treatment incredibly difficult.

Today, we’ll give you a run-down of what endometriosis is, share some misconceptions of the disease, and explain why you need to get a diagnosis from your doctor. Hopefully then, you’ll have the courage to pursue it further if your doctor dismisses you.

What is Endometriosis?

Endometriosis takes place when the glands from the lining of the uterus dislodge, move outside the uterus and begin to grow. This growth causes the blood and tissue normally released during a period to flow into the belly. Once there the growth can:

• Block the bowels
• Travel to the lungs
• Grow further and trigger bleeding
• Cause scarring

Symptoms of Endometriosis

The symptoms of endometriosis can vary from woman to woman, which is one of the reasons it’s so difficult to diagnose. Some sufferers are really badly affected, and others barely have any symptoms. The main symptoms of endometriosis are:

• Lower back or tummy pain which is usually worse during your period
• Severe period pain that prevents you from day-to-day activities
• Pain during or after intercourse
• Pain when urinating or excreting on your period
• Sickness, constipation, diarrhoea, or blood in your urine on your period
• Difficulty getting pregnant
• Heavy periods to the point where you have to use a lot of pads or tampons, or bleed through your clothing
• Some women even have feelings of depression caused by endometriosis

Myths and Misconceptions of Endometriosis

So now that we know why the symptoms and testing of endometriosis causes delays in diagnosis, it’s time to look into the myths surrounding the disease that have made it even harder to diagnose.

1. Endometriosis is just a bad period

We’ve covered this briefly already, but it’s not just the fact that heavy periods can be a sign of other diseases that cause a delay in diagnosis. The myth that ‘it’s just a heavy period’ rules out diagnosis completely.

During your monthly cycle, the lining of your uterus thickens in preparation for pregnancy. If you don’t get pregnant, the tissue created for pregnancy breaks down and leaves the body. Endometriosis happens when those hormones trigger similar thickening and bleeding in the tissue growing outside your uterus.

Because the bleeding and pain associated with endometriosis can occur at the same time as your period, it’s often misconstrued as that. However, these symptoms can be experienced outside your cycle or during or after sex which makes it stand out from a regular period.

2. You can’t get it when you’re young

Many doctors still believe that teenagers and young women are highly unlikely to get endometriosis. This means that they don’t even consider diagnosing it when girls and young women come to them with endometriosis symptoms.

The truth is, as long as you’ve started your period, you can get endometriosis. You’re more likely to get it in your early 30s or 40s, but women of any age have an increased risk if:

• A family member has had it
• Their period started at a young age
• Their periods last more than a week

Just because the risk is lower, doesn’t mean it should be ruled out by doctors altogether ,or they could be risking your future health. 

3. Hormone treatments and pregnancy cure endometriosis

Synthetic hormone drugs, such as the pill, progestins, Danazol and GnRH-analogue, have been used as a treatment for endometriosis for a long time. These drugs do temporarily suppress endometriosis symptoms, such as pain and bleeding, but only whilst the drugs are being used. Once the drugs are no longer being taken, symptoms usually return so it is not a cure for the condition. 

Pregnancy has also been touted as a cure for endometriosis, but it works in much the same way as hormone drugs. During pregnancy, your periods stop, and the levels of the hormone progesterone increase and ease the symptoms of endometriosis. Once the baby is born and you stop breastfeeding, it’s likely your symptoms will return. 

Unfortunately, there is no cure for endometriosis, but it can be managed using hormone drugs, pain pills and, in extreme cases, with endometriosis surgery. 

Avoiding a Delayed Diagnosis of Endometriosis

Endometriosis is a complex disease that’s easy to misdiagnose, leading to a delay in diagnosis for most women who have it. Despite being the second most common gynaecological condition affecting women in the UK, research has shown that, on average, it takes 7.5 years to correctly diagnosed someone with endometriosis. But why is this?

• Not enough patient knowledge: because period pain is a normal part of the cycle, many women assume it’s normal. So, when they experience these feelings, they don’t head to the doctor. We could say this is a failing of the sex education system, wherein endometriosis is almost never mentioned.
• Not enough doctor knowledge: similarly, many doctors don’t always gravitate towards this particular diagnosis as many don’t know enough about it to make an informed diagnosis.
• Confusion with other conditions: in a lot of cases, severe period pain is related to other conditions, like uterine fibroids, which are simpler to diagnose and reduce the chance of further testing.
• Diagnostic testing: there is no specific scan or test that can diagnose endometriosis accurately. The disease is usually found when a sufferer undergoes keyhole surgery.
• Historical female bias: many women are, unfortunately, still marginalised in the medical world. Often, their symptoms are ignored or brushed aside, which means they are often told this is a normal part of their cycle.

It may also be confused with a number of other diseases, including:

• Irritable bowel syndrome (IBS)
• Crohn’s disease
• Other bowel conditions
• Bladder conditions
• Pelvic inflammatory disease
• Certain cancers, including ovarian and uterine
• Uterine fibroids
• Interstitial cystitis
• Poly cystic ovarian disease
• Pelvic floor dysfunction
• Just a painful period

These conditions often cause misdiagnosis from doctors. So, if you’ve been diagnosed with one of these conditions, it’s important to make sure that you go back to your doctor and push for another diagnosis if you’re still experiencing symptoms.

The Effects of a Delayed Diagnosis of Endometriosis

Because late diagnoses of endometriosis happen so often, it likely may go undiagnosed for years. Because it’s typically a progressive condition, it’s important to get treatment as early as possible. Otherwise, some effects may include: 

Infertility

The only way to cure endometriosis is through surgery. The surgery aims to remove endometriosis tissue to help improve your chances of getting pregnant, although there is no guarantee that it will work. So, for anyone looking to conceive, it may be more of a struggle and, for some, almost impossible.

Complications in Surgery

Not only that, but endometriosis surgery can sometimes cause further issues. Bleeding, infection, or damage to disturbed organs may be commonplace. If you decide you want to go down this path, you should be aware of these risks, so be sure to speak to your surgeon beforehand.

Physical and Emotional Pain

Endometriosis can be a challenging condition to deal with, both physically and emotionally. Sonia Harris, an endometriosis sufferer who developed the condition during puberty, described the pain as so inescapable it “would make me faint and cry”.

She said the condition continued to grow over the years, and eventually it was knocking her off her feet for half of every month. Every time she saw her doctor or gynaecologist, they told her it was normal.

Then, one day, the pain never stopped, and she was finally diagnosed with endometriosis. However, she was told she couldn’t have surgery and, after 13 years of looking for a solution whilst her condition got progressively worse, she finally had the surgery with a specialist surgeon.

She describes how the condition took over her life and stopped her from enjoying most things. Sonia still has to deal with the emotional impact those years of pain had on her life, and said she met many others along the way who went through the same experience. Reading her story will definitely push you to get a diagnosis and treatment as early as possible.

Claiming Compensation for Delayed Diagnosis of Endometriosis

Just one final thing you should be aware of, especially if you’ve already suffered from endometriosis after a failed diagnosis. If your GP, gynaecologist or other healthcare professional was negligent in diagnosing your condition, you should be able to claim compensation for delayed diagnosis. 

The compensation would cover financial losses if the condition stopped you from earning money. It would also cover any emotional and physical damage you suffered that could’ve been avoided if they had diagnosed your condition earlier.

Speak to a solicitor or an endometriosis charity to get the ball rolling. It’s a doctor’s job to diagnose you properly and, if they’ve fallen short of that because of misconceptions around the condition, the fault lies with them.

What’s Next?

In this article, we’ve given you an overview of what endometriosis is, why it’s often misdiagnosed or missed, and reasons why you should push your doctor for a correct diagnosis. Endometriosis is a horrible condition that needs to be treated more seriously by the medical profession. If, after reading this article, you’re sure you have it, then don’t let the doctor off the hook and make sure they investigate it properly.

Have you ever had a negative experience with the GP with your endometriosis diagnosis? Tell us your story, in the comments down below, and let us know how you went about pushing for your diagnosis.