Endometriosis Pain: What It Feels Like, Why It Happens and What Can Help

Endometriosis affects around 1 in 10 women* and if you’re one of them, you may know that endometriosis pain can be chronic and severe, and is often dismissed or misdiagnosed. At Hers, we know your pain is real and understand the distress that being told your pain is “just part of being a woman” or “it’s just period pain” can cause. 

For the record, it’s not, and these factors help explain why it can take so long to feel heard and have your symptoms validated, with the average endometriosis diagnosis in the UK taking 9 years and 4 months.**

So, whether you have an endometriosis diagnosis or are awaiting one, this guide explains what endometriosis pain feels like, what causes it, how to distinguish it from period pain, when you should see a doctor and how to best manage your pain for a better quality of life. 

What Does Endometriosis Pain Feel Like?

Every person’s experience of endometriosis pain is individual. It can vary in severity, intensity and even how long it lasts. Whatever it feels like for you, endometriosis pain can significantly affect your quality of life, with many people describing pain that feels like a sharp, knife-like, stabbing, burning or deep aching sensation. Some of the symptoms of endometriosis include:

• Pelvic pain 

• Lower back pain

• Legs

• Pain during bowel movements or urination

• Pain during sex* 

Endometriosis pain is often cyclical, following specific phases of the menstrual cycle, such as menstruation or ovulation, but it can also be constant, especially as chronic inflammation and nerve sensitisation can cause pain to spread to other phases of the menstrual cycle and across the body over time.  

The severity of your pain does not always match the severity of the endometriosis. For example, it is possible to experience an occasional, manageable dull ache and have severe endometriosis or experience intense pain and have a mild form of the condition. Everyone is different, and not everyone will feel the same level of pain or discomfort or in the same places.

What Causes Endometriosis Pain?

The cause of endometriosis is unknown,* but several processes contribute to endometriosis pain, often at the same time. Inflammation, scar tissue, nerve irritation and changes in how your nervous system processes pain can all play a part.  

Inflammation and endometrial tissue

The main characteristic of endometriosis is tissue that is similar to the womb lining growing outside of the uterus, which causes swelling, bleeding, inflammation and ultimately pain. These tissue patches can respond to hormonal changes and may bleed, causing inflammation in surrounding tissues. 

Inflammation releases chemical messengers called prostaglandins that can stimulate or sensitise pain-sensing nerves. Prostaglandins also contribute to womb contractions associated with menstrual cramps, which can explain why the pain may become more intense around the time of your period.*

Pelvic inflammation caused by misplaced uterine tissue can also cause a severe and painful type of bloating, often known as ‘endo belly’.** Like the bowel and gas changes that occur with irritable bowel syndrome (IBS), endo belly can make your stomach bulge and harden, which can be uncomfortable and even tender to the touch. It often flares up around the time of your period and can last from hours to weeks.

Adhesions and scar tissue

Prolonged inflammation can lead to bands of scar tissue called adhesions, which cause tissues or organs that would normally move freely to stick together.* If the tissues are stuck together, movement or stretching can be painful, particularly during sex or bowel movements. This is one reason why endometrial pain can occur outside of your period.

Nerve involvement

Endometriosis and nearby inflammation can irritate or sensitise your nerves. Less commonly, endometriosis can directly involve larger pelvic nerves,* which can contribute to pain travelling into your back, buttock or leg, resulting in endometriosis leg pain or sciatica. 

Persistent pain can also make the nervous system more sensitive, a process called sensitisation. Pain may continue even after some of the original inflammation has settled.** This is a real, measurable change in how your body processes pain, not something you are imagining.

Types of Pain Associated with Endometriosis

Endometriosis isn’t defined by just one type of pain; it can manifest in several different ways. You may experience one or several types of pain because of your endometriosis, which can make it difficult to carry out your daily activities. Here are some of the most common types of pain associated with endometriosis:

Painful periods

Also known as dysmenorrhoea, period pain associated with endometriosis can begin before bleeding even starts and continue through your period. This is known as cyclical pain, making your usual activities more challenging to complete. You may find that menstrual cramps are more intense or severe than usual and can last for longer, with some people describing them as an intense and deep throbbing feeling. You may also experience heavy bleeding.

Pelvic pain

Pelvic pain is one of the most common symptoms of endometriosis, with more than 60% of diagnosed women reporting chronic pelvic pain.* It is non-cyclical, which means it can occur at any time between your periods as well as during them. Some people describe a dull, persistent ache, while others experience sharp, intense cramping. Either is possible, and everyone feels endometriosis pain differently. Pelvic pain can affect your lower abdomen, thighs and lower back.

Pain during or after sex

This can be difficult to talk about, but it is a recognised symptom and not something you have to put up with. Another common pain-related endometriosis symptom is dyspareunia, or pain during or after sex, which can feel like deep pelvic pain or a dull ache. It’s believed to affect 50 to 70% of women with endometriosis.*

Pain during bowel movements or urination

If uterine tissue is found in the pelvic area, it can affect the nearby organs, such as the bladder or bowel, causing pain or discomfort when you go to the toilet. You may also notice that your symptoms get worse around your period. 

Lower back or leg pain

Sometimes pelvic pain can spread into your lower back, hips, buttocks or thighs, which can range from a feeling of aching to burning or shooting. If endometrial tissue grows around your sciatic nerve, you may experience shooting pains down your leg or sharp, throbbing or stabbing pains that make it difficult to walk or stand up. 

Is It Endometriosis Pain or Just Period Pain?

Endometriosis and period pain can share similar symptoms, but the timing, severity and associated symptoms can offer clues as to which you may be experiencing. However, they often overlap, making diagnosis challenging. Here is an overview of the difference between endometriosis pain and period pain: 

Endometriosis is unique to you, so use this table as a guide, not a diagnostic tool. For example, endometriosis can respond well to painkillers for some people, and pain relief working does not rule out a diagnosis. Period pain can also have other causes, like adenomyosis (when womb lining tissue grows into the muscle wall of the womb) or fibroids (growths in or around the womb).

A great place to start when it comes to understanding your pain is to keep a symptom diary that records:

• When your pain starts and how long it lasts

• Where the pain occurs and how intense it feels

• Whether the pain is accompanied by any bleeding, bowel or bladder symptoms

• If any medications have helped or any that you have tried

• If the pain stopped you from doing any of your usual activities

You can use this information to start a conversation with a clinician about your pain. 

When to See a Doctor About Endometriosis Pain

If you’re worried about endometriosis pain, you’re not alone, and there is help available. Book an appointment with a doctor if the pain repeatedly interferes with your life, keeps coming back, is persistent or is not properly controlled with painkillers. Help is available whether or not you have an endometriosis diagnosis.

You should also see a doctor if you experience:

• Heavy bleeding

• Pain during or after sex

• Bowel or bladder symptoms

• Fertility concerns

My symptoms have been dismissed before

If your symptoms have been dismissed before, it’s unfortunately very common, with people waiting, on average, 9 years and 4 months, for confirmation in the UK.* If your symptoms continue, make another appointment and consider taking a written account of how you are feeling to help keep the appointment focused.

You could say something like:

“The pain is affecting my ability to work and sleep. I have tried these medicines, but I’m still unable to manage my normal activities. Could endometriosis be possible, and what is the plan to investigate it?”

If your symptoms continue, arrange another appointment and ask the clinician what happens if the first treatment doesn’t help, when they will review it and whether a referral may be appropriate. You can also request a second opinion. 

How is endometriosis diagnosed?

Your doctor will discuss your symptoms with you at first – this is why keeping a symptom diary is a good first step – and then may offer further examinations and tests if you agree. Anyone who is suspected of having endometriosis should be offered a transvaginal ultrasound to help identify if the symptoms you are experiencing are caused by endometriosis and if endometriosis is affecting your ovaries, bladder, bowel or ureters (the tubes that carry urine out of your body).*

You may also be offered specialist ultrasound or an MRI scan if deeper disease is suspected. However, a normal ultrasound or MRI result does not rule out endometriosis because some forms are difficult to see with imaging tests. A gynaecologist may discuss laparoscopy, a minor operation that uses a small camera to examine your pelvis, to confirm endometriosis. 

How to Manage Endometriosis Pain

If endometriosis is causing you pain, you don’t need to suffer in silence. A variety of treatments are available, ranging from lifestyle and self-care measures to medication to surgery. The right approach for you will depend on your symptoms, medical history, personal preferences and whether you want to become pregnant.

Lifestyle and self-care measures

During an endometriosis flare-up, a warm bath or warm compress can help with cramps. Gentle movement can also help you feel more comfortable, but if your pain gets worse or is intense, getting some rest is a reasonable option.

Other helpful lifestyle measures include:

• Eat whole, nutrient-dense (anti-inflammatory) foods that can reduce inflammation in the body – choose foods that are high in fibre, such as fruit, vegetables and wholegrain, as well as omega-3 fatty acid sources including oily fish and nuts to support hormone balance

• Stay hydrated – drink plenty of water to avoid constipation and irritating your bladder 

• Manage stress – practices such as deep breathing, meditation, mindfulness, starting a new hobby or exercising are great ways to control stress, which can make inflammation worse

• Track your cycle – some people find it helpful to track their menstrual cycle, including symptoms, to help plan social events and work commitments in advance, so that an endometriosis flare-up has little impact 

Pain relief medication

Painkillers, such as paracetamol or anti-inflammatory medications like ibuprofen, can provide some relief but do not cure endometriosis. You can buy these over the counter, but a GP may recommend prescription anti-inflammatory medications if appropriate.

Hormonal treatments

Treatments such as the combined contraceptive pill and the hormonal coil can reduce period-related pain by controlling your hormone levels and managing your periods. Specialists may consider other medications that reduce ovarian hormone production, including GnRH treatments. 

Tell your clinician if you are trying for a baby or plan to get pregnant because hormone treatments are unlikely to be suitable for you.

Surgery

Surgery can remove or reduce endometriosis and can remove adhesions as well as pain. However, pain relief isn’t always guaranteed, and symptoms can return. For example, removing your womb (hysterectomy) is not a guaranteed cure because endometriosis can remain elsewhere in the body.

Surgery should be a considered decision based on your personal situation rather than an inevitable next step. 

FAQs

Can endometriosis pain be cured?

No. There is currently no cure for endometriosis, but there are treatments available that can help make symptoms more manageable. Some treatments include painkillers, hormonal contraception and surgery for the most painful cases. The right treatment depends on several factors, including your preferences, specific symptoms, and whether you want to conceive. 

Why is endometriosis pain worse at certain times?

It’s often related to your hormones, inflammation, or nerve sensitivity. Endometriosis pain is usually worse at specific times for some people. You may notice that the pain returns or intensifies around the time of your period, ovulation, at night, or when you empty your bowels. 

Can you have endometriosis pain without a diagnosis?

Yes. You can experience severe pelvic and period or menstrual pain before you get a formal endometriosis diagnosis. Many women live with the condition for years before receiving an official diagnosis because their symptoms may be dismissed, normalised or even missed on tests. The average time it takes to get a diagnosis in the UK is 9 years and 4 months, with 1.5 million women living with the condition.*

Does endometriosis pain get worse over time?

It can, but it doesn’t for everyone. Endometriosis pain can worsen over time for some people, but everyone is different. It can also sometimes improve; it just depends on how the condition affects your body. If your pain worsens, becomes more intense, or stops you from carrying out your daily activities, speak to a clinician for further advice and support. You don't have to suffer in silence.

What helps endometriosis pain fast?

It depends. Many women find pain-relieving solutions that suit them, and those can differ from someone else’s “go-to”. Some of the common fast pain-relieving solutions for endometriosis include targeted heat therapy, taking fast-acting anti-inflammatory medications and electrical nerve stimulation devices.