The Symptoms of Endometriosis. Not just a painful period.

For most of us, period pains are something we’ve probably dealt with at some stage. But how much pain is too much pain?

Endometriosis is a chronic condition where cells similar to those lining the uterus can be found in other parts of your body such as in the ovaries and Fallopian tubes. Endometrial lesions have also been found in the vagina, cervix, vulva, bowel, bladder and the rectum. Rarely, it can even appear in other parts of the body such as the lungs, brain, and skin (2).

Much like the lining of your uterus, these cells build up and eventually shed. However, unlike your period – this blood has no escape route. This can cause crippling pain and a long list of other endometriosis symptoms.

Yet despite how common it is, it can take up to 8 years to get a diagnosis. That’s 8 years of debilitating symptoms, unanswered questions and emotional turmoil. It’s time for change – don’t you think?

Here are the top symptoms of endometriosis that you should know and keep an eye on (3). 

• Painful periods
• Heavy periods
• Chronic pelvic pain
• Pain during and / or after sex
• Abdominal bloating or other gastrointestinal issues such as constipation and diarrhoea
• Chronic pain and fatigue
• Pain during urination or bowel movements
• Difficulty getting pregnant associated with one or more of the above symptoms

Period pains on a whole other level:

Coming in at the top of the endometriosis symptom list has to be very painful periods, often described as ‘a razor blade pain’. 

Some amount of period pain is expected and normal but it’s a warning sign if your pains are so bad that they get in the way of your everyday life. 

Now, let’s get a little sciency. During the menstrual cycle, the lining of the uterus (the endometrium) is built up to support a potential pregnancy. If it’s baby making dreams are not fulfilled it goes into a fit of rage – cue in your period. During your period, your uterus contracts, so the endometrium can be shed. This, combined with the effects of a chemical called prostaglandin that helps the uterus contract, are responsible for those period pains.  

When it comes to endometriosis, the endometrial-like cells that have grown outside of the uterus build up and shed similarly to the endometrium. But the difference is that they have no way out. This internal bleeding leads to inflammation, intense pain and a buildup of scar tissue and adhesions (type of tissue that can bind your organs together) and may cause pelvic pain.

Generally the first or second day of your periods are expected to be most painful. But in cases of endometriosis, the crippling pain usually kicks in a few days leading up to your period’s arrival. However, it can also make an unwelcome return during ovulation (which happens around the middle of the cycle) or even throughout the month. 

People often also experience chronic pain with increased lower back and pain around their legs as well which increases around their periods.

But how do you know if your pain isn’t ‘normal’?

Well, if you’re not able to manage the pain with at home remedies like a hot water bottle or over the counter pain medication and it prevents you from going about your daily life then don’t just put up with it! Sure, periods are a pain, but they shouldn’t make you compromise on living the life you want. It is important to seek medical advice to understand if there might be an underlying cause for it.

Not just painful periods, they might be heavy as well:

Heavy periods are very common, but certainly not normal. The American Congress of Obstetricians and Gynecologist (ACOG) defines a heavy period as: 

• Bleeding more than 7 days

• Having to change your period products every hour or two for several hours in a row.

• Needing to wear 2 period products (eg a pad and tampon) at the same time to manage flow;

• Regularly experiencing leaks;

• Needing to wake up at night to change your period products;

• Passing blood clots that are bigger than a dime (10p coin).

If your periods sound like this, then it’s best to seek medical advice to make sure everything is in check. Monthly heavy bleeding during your periods can increase the risk of anemia, which can result in symptoms of fatigue, feeling cold often and hair thinning.

Sex causes pain and not pleasure:

Another common symptom of endometriosis is pain during vaginal penetration which can make sex painful; this is called dyspareunia. This pain will vary for everyone and for some endometriosis sufferers, it might not even happen. Some might only experience mild pain, while others have reported it feeling like a stabbing shooting pain. Pain during sex is usually felt deep inside the pelvis and can also occur after you’ve finished having sex.

This can be caused because the endometrial lesions find their way to your pelvic region, where they continue to grow causing a buildup of scar tissue. This can lead to penetrative sex causing irritation and inflammation. 

When sex becomes more painful than pleasurable, it can certainly affect your desire to initiate sex which can often have negative impacts on intimate relationships. It can be a challenging conversation, especially with a new partner, however, effective communication is very important when it comes to partnered sex. 

Any unwanted pain during sex is not normal. If you experience any pain during or after sex or any bleeding, it is best to get it checked out. 

If you find your mental health is also impacting your sex life, you could consider going to counselling or sex therapy either by yourself or as a couple to navigate your feelings around it and improve communication.

The “Endo Belly”:

“Endo belly” is a common term used to refer to the uncomfortable abdominal symptoms associated with endometriosis. The painful swelling can occur when endometrial tissue buildup causes inflammation in the abdomen, resulting in pain. 

Bathroom bother:

The wandering endometrial lesions can find their way to the surface of the bowel or even penetrate its wall. This can cause very similar symptoms such as pain when urinating or passing bowel movements or noticing blood in your urine or poo. People also experience symptoms similar to irritable bowel syndrome (IBS) such as diarrhoea, constipation and bloating. These symptoms are often affected by your cycle and can worsen in the days before your period.

Fertility Problems:

Unfortunately, endometriosis can affect your chances of getting pregnant, yet there is not a specific answer as to why. The American Society of Reproductive Medicine (ASRM) published a committee opinion in 2012 which stated that infertility affects about 30 – 50% of those with endometriosis.

Some important context here is that many people don’t realise they have endometriosis for a long time due to a general lack of awareness about the condition and the slow crescendo of worsening symptoms. “Endometriosis can negatively impact fertility without giving any other signs of its presence. This clinical scenario of ‘silent endometriosis’ is likely more common than generally recognised,” says Dr. Gargiulo. “Reproductive endocrinology and infertility specialists are very aware of this possibility, and keep endometriosis in mind even when dealing with apparently ‘unexplained’ infertility and recurrent pregnancy loss.”

When trying to conceive, it is usually recommended to try every 2 to 3 days to increase the chances of conceiving. However, sex being too painful can stop someone from wanting to have regular sex.

Another potential reason is that the extra scar tissue growth can create an inhospitable environment for conception to take place. This is because the excess growth can damage the Fallopian tubes or the ovaries. This can cause blocked or scarred Fallopian tubes, leading to difficulty for the sperm to fertilise an egg, and may increase your risk of an ectopic pregnancy.

Research has also shown that endometriosis can impact egg quality with the potential cause being the inflammation it causes. Poor egg quality can increase the risk of genetic anomalies in the embryo (baby to be) and is a potential explanation for why it is linked to increased risk of pregnancy complications such as early pregnancy loss.

Surgical management is often recommended for endometriosis and having surgery on the ovaries can also lower ovarian reserve (the amount of eggs you have left).

Those who face difficulty in conceiving with endometriosis are often advised IVF as a treatment option. However, it has been reported that success rates of IVF treatment are often lower for those with endometriosis. This could be due to two main reasons. The first is poor egg quality and the second is the potential inhospitable uterine environment that can affect the ability of the embryo to attach to the endometrium, which is important for pregnancy to happen. 

However, this does not mean if you have endometriosis you can’t conceive. Even in cases of severe endometriosis, natural conception is possible. 

Mental Health Impact: 

Living with a chronic condition can be tough and often isolating. Endometriosis can affect various aspects of life from personal to professional relationships, which can impact your mental health. 

If you feel like endometriosis is impacting your mental health, and you are not able to open up to loved ones about how you feel, you can turn to online support communities such as Endometriosis UK and also seek professional help.

This article is just for information purposes and should not be taken as medical advice. These symptoms may be linked to other causes apart from endometriosis. Everyone experiences endometriosis in a different way, and the symptoms mentioned are not an exhaustive list. Not everyone may experience these symptoms to the same severity and it is not necessary that someone might experience all these symptoms. Having severe pain or other symptoms is not necessarily a sign of more severe endometriosis. It is important to seek medical advice to clarify the cause of any symptoms.

If you’re suffering from painful periods or any of the above symptoms, our at-home hormone tests can help you get to the root of your period problems. At Hertility, we don’t believe in giving you results without the rest. Our team of experts include endometriosis specialists who can help give you the actionable advice you need.