A teenagers guide to understanding Endometriosis

Lots of people will experience period pain and other symptoms which may not necessary be caused by Endometriosis, but that’s not to say young people cannot develop Endometriosis.

 

Because of the many myths surrounding Endometriosis, many health care professionals believe teenagers cannot develop the condition, however this is not true.

 

Whilst periods can take a while to settle and regulate, anywhere between one - two years is not uncommon to experience some irregularities and mild pain. However, once things have settled, your periods should be manageable, and they should not interfere with your everyday life.

What is normal?

Starting your period is a sign your body is maturing. Leading up to this you will notice physical changes with your body as your breast begin to develop and under arm and pubic hair starts to grow. You may pass a white or yellow-ish fluid - known as vaginal discharge. Don’t panic! This is a sign your first period is on its way.

You might also notice changes in your skin and your mood - you may find you feel more irritable than normal, these are all positive signs your body is developing in the right way.

 

 

Understanding the reproductive system

The reproductive system is made up of a uterus (a muscular pear-shaped organ where a baby develops and grows which sits inside the pelvis), the ovaries (two oval shaped organs containing eggs located either side of the uterus connecting to the fallopian tubes), fallopian tubes (the tubes which connect the ovaries to the uterus - once a month, one or sometimes more of these eggs travel down one of these tubes), the cervix (the lower part of the uterus which connects to the vagina) and the vagina (the opening to the pelvis which connects to the uterus). The vulva is the name given for what we see on the outside.

These delicate internal and external organs, structures and functions work together with hormones which signal messages to the body, causing the lining of the uterus to build up, getting it ready to release an egg in monthly cycles.

 

These eggs then come together with sperm where they fertilise and form into a baby. If the egg is not fertilised, the lining of the uterus breaks down and leaves the body (bleeds), this is called a period and the same thing happens each month.

 

How long does a period last and what should I expect?

The duration of a menstrual period can generally last between 2-8 days, with an average of 4-6 days. It is normal to pass between 20-60ml of blood and anything more than that (more than 80ml) is considered ‘a heavy period’. For those who experience heavier or faster bleeding, there may be some small blood clots, this is normal. You may also experience some general discomfort, feeling tired, breast pain, changes in bowel habits (constipation or diarrhoea) and headaches. These symptoms are normal, they will usually disappear on their own once your period ends and they should not interfere with your day-to-day life and activities.

 

 

What is the average age to start having periods?

The average age for periods to start is twelve, however starting your period anywhere between the age of ten to sixteen is considered normal. If you have not yet started your period by the time you reach the age of sixteen, or if after two years your periods are irregular - meaning your period hasn’t regulated into a typical twenty-eight-day cycle, it’s a good idea to have a chat with your parent/guardian and make an appointment and discuss this with your General Practitioner (GP).

What is endometriosis?

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Endometriosis is a chronic, inflammatory condition where tissue resembling the endometrium (the lining of the uterus) is found growing in areas of the body it shouldn’t be, usually within the pelvis. It’s most commonly found involving the lining of the pelvis, the reproductive organs, the urinary bladder and the bowel.

Who's affected? 

An estimated 10% of people who menstruate (from their first period to their last) are affected by Endometriosis, although it can also affect people before or after menstrual life.

 

You may be more likely to develop Endometriosis if a close relative, such as a mother or sister has it. 

What is the most common sign to look out for?

The most common symptom of Endometriosis is recurring pelvic pain. This pain can come and go, usually worsening around the time of menstruation, although it can also occur before your period starts.

 

This pain is usually felt in the lower abdomen; lower back; and sometimes extending to the rectum; hips; and legs. Pelvic pain can sometimes be so severe that it can cause significant difficulty in walking and sitting, particularly during your period.

 

This type of pelvic pain may result in people being bedridden and unable to attend school.

Some teenagers may also develop other symptoms such as, heavy, or irregular menstrual bleeding, pain when urinating or passing bowel movements, an overactive bladder, or fatigue (extreme tiredness). 

more about the symptoms.

Taylor and mum Sue share their experiences and advice to other parents going through similar experiences.

The importance of keeping a symptom diary

Keeping a diary of your symptoms can help towards getting the care and support you need. It can also help you think about your symptoms and when and how often they occur.

 

We recommend keeping a symptom diary for a minimum of six weeks to show your GP. 

When should I seek help?

 

Endometriosis can sometimes get better by itself, but it can also progress over time.

 

If your periods are unusually painful or if you are experiencing pain that is stopping you from attending school or taking part in day-to-day activities and your pain cannot be controlled by taking a warm bath or by taking simple pain relief medications, such as paracetamol, mefenamic acid or ibuprofen, this is NOT normal.

 

It’s a good idea to tell your parent/guardian and to make an appointment with your GP as early as possible.

Which tests will I find helpful?

 

There are several tests which can be helpful for doctors to look for physical clues of Endometriosis and to also rule out other conditions. However, often at times these tests can still miss Endometriosis, therefore, where appropriate, multiple diagnostic tools are sometimes required to achieve an accurate diagnosis.

 

Should your specific results return inconclusive or clear, we would still encourage you to seek further medical assistance or tests if your symptoms are persistent or you still suspect Endometriosis.

Tests may include

 

  • Pelvic exam

  • Ultrasound scan

  • MRI

  • Surgery

more about these tests and what to expect. 

It’s important to know:

 

​Some of these tests may be uncomfortable, therefore taking somebody along with you may help and scheduling these exams when you can take a day off school may also be helpful. Do not cancel your appointment if you are having your period as sometimes this makes it easier to make a diagnosis. 

What treatments are available?

Symptoms can be helped with a combination of pain relief and anti-inflammatory medications, diet and lifestyle changes (i.e., limiting foods that promote inflammation); pelvic floor physiotherapy and alternative therapies such as acupuncture.

 

Hormone therapy treatments to limit, help regulate or temporarily stop your periods may also benefit.

 

For more severe cases, treatment of the Endometriosis may need surgical intervention. This is an invasive procedure.

What can I do as a parent/guardian?

When someone you care about has Endometriosis, you may wonder what you can do to help.

 

Receiving a diagnosis of Endometriosis can be overwhelming and everyone’s experiences are unique, therefore it’s important to understand your loved one may have several concerns, especially when their diagnosis could impact their future.

Try to gain a clear understanding about Endometriosis, and both the physical and emotional impact it can have on those living with it.

 

Some people may find it difficult to open up and express their feelings, therefore the more knowledge you have and the more you talk about it, may just encourage your loved one to open up, and remember, you are not expected to have all the answers. Sometimes just a listening ear is enough.​

You can help by encouraging your loved one to seek medical advice and accompanying them to appointments can help build a good support system around them between yourselves, medical professionals, and school.

Deirdre shares her experiences of supporting her daughter Annissa through her journey with Endometriosis.

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