Endometriosis
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Symptoms
Endometriosis can cause many symptoms, but not everyone with endometriosis has symptoms.
Common symptoms of endometriosis include:
- Pelvic pain which is worse during periods
- Period pain that affects your activities
- Pain during or after sex
- Pain when having a wee or poo during periods
- Feeling sick, being constipated or having diarrhoea
- Having blood in your wee or poo during periods
- Difficulty getting pregnant
- Feeling tired
Endometriosis can also make you have heavy periods, so you might need to change your pad or tampon more frequently. You might also bleed through your clothes.
In some cases, endometriosis can significantly affect your quality of life.
Causes
What causes endometriosis?
The exact cause of endometriosis isn’t known, but it is thought it could be due to:
- Genetics – endometriosis tends to run in families and it tends to affect Asian people more than those of other origins
- Endometrium cells (cells of the womb) spread through the body through the blood or lymph (a fluid that carries nutrients and proteins to your tissues and cells)
- Problems with the immune system
- Retrograde menstruation – during periods, some of the womb lining flows backwards. It can flow through the fallopian tubes and can then implant in the pelvis
- Metaplasia – this happens when one type of cell changes to another
None of the above alone are considered to fully explain why endometriosis happens and it is likely to be caused by a combination of factors.
What happens if you have endometriosis?
If you have periods, each month during the menstrual cycle, the body goes through hormonal changes. Hormones are released which makes the womb lining thicken – this is to prepare for a fertilised egg. If pregnancy doesn’t happen, this lining breaks down and is shed (a period).
If you have endometriosis, cells like those in the womb’s lining grow in other parts of the body such as parts of the pelvis, your ovaries and fallopian tubes. These cells follow the same hormonal changes and bleed each month. However, this blood can’t leave the body as a period. This can cause pain, inflammation and scar tissue to form.
It’s important to know that endometriosis is:
- Not an infection
- Not cancer
- Not contagious
Getting diagnosed with endometriosis
Getting diagnosed with endometriosis can often be a lengthy process because some of the symptoms are similar to other conditions. If you have any symptoms of endometriosis, it’s important to speak to your doctor and give them as much information about your symptoms as possible. It may help to write down your symptoms before going to your appointment.
When you visit your doctor, your doctor might examine your tummy and vagina. Intimate examinations can be difficult, so it’s important to remember that you can ask for a chaperone (an adult who’s present during an intimate examination). You can choose to have a partner, relative or friend with you.
You also have the right to ask for a chaperone to be provided by the healthcare setting you see the doctor in. This can be helpful if you want extra support but would prefer to not have your partner, relative or friend in the room.
While blood tests, scans and internal examinations can be helpful, they can’t always diagnose endometriosis. Having a normal blood test, scan or internal examination doesn’t mean you don’t have endometriosis.
The only certain way to diagnose endometriosis is through a laparoscopy. This is a surgical procedure that involves inserting a camera called a laparoscope, into the pelvis through a small cut near the belly button. The surgeon can then take a look and examine the pelvic organs for signs of endometriosis. If they see any, they can then try to treat it or remove it so it can be investigated.
Treatment & management
If you’ve been diagnosed with endometriosis, you can speak to your doctor about ways to manage it.
There isn’t a cure for endometriosis, but there are treatments to help manage and ease symptoms you might have.
These aim to:
- Help relieve pain
- Remove endometriosis tissue
- Help to improve fertility
- Reduce the chance of the endometriosis returning
Treatments for endometriosis can include:
- Pain relief
- Hormone medicines and contraceptives can stop the production of oestrogen. When the ovaries aren’t producing oestrogen, endometriosis can improve in some cases
- Surgery to remove patches of endometriosis tissue
- Surgery to remove parts or all of the organs that are affected by endometriosis like a hysterectomy
- Diet changes – some people with endometriosis have problems with their bowels. In some cases, this is related to a gluten or lactose intolerance. Removing these from your diet can be helpful to see if it helps your symptoms, however, speak with your doctor before removing any food groups from your diet
- Your age
- The severity of your symptoms
- How long you’ve had your symptoms
- If you want to get pregnant in the future (some treatments can stop you getting pregnant)
- If surgery is an option for you
- If you’ve tried any treatments before
It’s important to know that if you have surgery for endometriosis, there are risks of it returning. You can speak to your doctor for more information on these risks.
Your doctor will discuss your options and help you decide which will be best for you. This depends on factors like:
If you have mild symptoms, have no problems with fertility or you’re approaching menopause, you might not want treatment. For some people, symptoms can improve during menopause.
Endometriosis can sometimes improve on its own, and it's possible to monitor your symptoms closely and choose treatment only if they become more bothersome. This approach allows you to make informed decisions based on how you feel over time, ensuring you receive the care that best suits your needs.
Managing endometriosis
Pain is the main symptom of endometriosis, so we’ve put together a list of pain management and pain relief options for you to consider. Some of these might work better for you than others, so it can be worth experimenting to find the method that works best for you.
Pain relief
Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen work by blocking the production of prostaglandins (chemicals that cause pain and inflammation). These medicines are most effective when they’re taken before the body starts producing prostaglandins (this could be the day before or several days before your period is due).
Most people can take NSAIDs, but it’s important to speak to a pharmacist or doctor to make sure that they’re appropriate for you. It’s important to take NSAIDs with food to help prevent them from upsetting your tummy.
Pain relief like paracetamol can also work for mild pain.
If you have period pain because of your endometriosis, you can also consider accessing the Boots Online Doctor Period Pain Relief Service2 for advice and, if appropriate, treatment. It’s important to know that this service isn’t for endometriosis pain but for painful periods due to endometriosis.
TENS machines
TENS machines are an alternative to traditional pain relief treatment. These small devices send electrical pulses through electrodes attached to the skin. This can help to block pain messages or stimulate the production of endorphins. TENs can only provide temporary pain relief from minor pain.
It’s important to speak to your GP before using a TENS machine. TENS isn’t suitable for everyone and shouldn’t be used (unless advised by your doctor) if:
- You have a pacemaker or another type of electrical or metal implant
- You’re pregnant or there’s a chance you might be pregnant (TENS isn’t usually recommended early in pregnancy but is sometimes used during labour)
- You have epilepsy or a heart problem
- You have an overactive bladder
Physiotherapy
Physiotherapists can help with exercise and relaxation plans to help support your pelvic floor muscles and manage pain. Gentle exercises, such as yoga or pilates can also help with supporting abdominal and back muscles.
Physiotherapy can be accessed through the NHS or privately.
Heat & comfort
Some people find that using a hot water bottle or taking a warm bath can provide soothing relief.
Some people also use a heated wheat bag for the same effect.
Complications of endometriosis
Dealing with endometriosis can be physically challenging, but we're here to help.
Experiencing difficulties with getting pregnant (infertility) can be a concern for some people.
While endometriosis is not a direct cause of infertility, it may be associated with challenges in fertility. It’s important to know, that people with endometriosis can still go on to naturally conceive and have healthy pregnancies.
Surgery to remove endometriosis tissue can help to improve the chances of getting pregnant, but there isn’t a guarantee that this will result in pregnancy.
Surgery for endometriosis isn’t risk-free. It can cause further issues like:
- Infections
- Minor bleeding
- Bruising around the wound
- Damage to affected organs
- A blood clot in the leg
If your doctor recommends surgery, they will speak to you about the risks. If you want to get pregnant or if your fertility is a priority for you, it’s important to speak to your GP, as they can discuss treatment and options that may help you get pregnant – this may include fertility treatments like in vitro fertilisation (IVF).
If your endometriosis affects your bowel, your symptoms might be similar to irritable bowel syndrome (IBS). These can include:
- Pain when having a poo
- Deep pelvic pain when having sex
- Rectal bleeding during a period
Endometriosis that affects the bladder is rare, but symptoms can include:
- Bladder irritation
- Feeling the need to wee urgently
- Pain if your bladder is full
- Blood in your wee during a period
- Pain in the area of your kidneys
If you have any of the above symptoms, it’s important to speak to your GP. You might be referred to a specialist endometriosis service as it may be necessary to consider whether the part of the bladder or bowel which is affected by endometriosis may need to be removed.
If you have endometriosis tissue near or on your ovaries, you might also develop ovarian cysts and adhesions. Ovarian cysts are cysts filled with fluid that sit on the ovaries. This can be painful if they become very large. Adhesions are areas of endometriosis tissue that can join organs together. Ovarian cysts and adhesions can usually be treated with surgery, but they might come back.
Living with endometriosis
Living with endometriosis can present some challenges, but many people find effective ways to manage their symptoms and maintain a fulfilling daily life. It's important to remember that you are not alone, and there are various strategies and resources available to help you navigate work, social activities, and self-care.
Emotional support
It’s normal to need emotional support when you’re living with endometriosis. Don’t be worried about asking your friends, family or partner for support. It can also help to speak to and listen to the experiences of other people who live with endometriosis.
We’ve gathered some experiences of people who have endometriosis. Knowing there are other people with shared experiences can be a comfort.
Your GP may also refer you to counselling. This can help you manage and cope with the different thoughts and feelings you might be experiencing.
Everyday life
Remember to listen to your body and rest when needed. It's okay to take breaks and adjust your plans to accommodate how you are feeling.
Planning ahead for activities and ensuring you have any necessary medication or comfort items on hand can help you stay prepared and reduce feelings of stress.
Overall, living with endometriosis involves finding a balance that works for you. Finding the right support and strategies can help you enjoy a productive and fulfilling life.
Work & daily activities
Balancing work and endometriosis can sometimes require extra planning and support. It's helpful to communicate with your employer or school/university about your condition if you feel comfortable doing so.
Workplaces may be able to offer accommodations, such as flexible hours or the option to work from home on days when symptoms are more intense. Utilising these options may make it easier to manage your workload while taking care of your health.
Managing symptoms
Incorporating self-care practices into your routine can also make a significant difference. Regular gentle exercise, like walking or yoga, may help alleviate some symptoms and improve overall well-being.
Additionally, maintaining a balanced diet and staying hydrated will support your body's needs.
Endo-warrior Anita Nneka Jones gets candid
TV presenter and reporter, Anita Nneka Jones, opens up about what it’s like to live with endometriosis and answers some of the strangest questions she’s been asked along the way. From what helps her manage her symptoms at work, to whether she’ll be able to have kids and if celery juice can help cure endometriosis (spoiler alert: no it can't). Here, she shares some of the wildest questions she’s come across about the condition.
Endometriosis affects everyone differently and there are multiple options for treatment and pain management. If you’re experiencing pain, don’t just pass it off as the norm. Speak with a GP.
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Frequently Asked Questions
Endometriosis doesn’t have a cure. The ‘best’ treatment is the one that helps you and works for you. Everyone is different, so what works for someone else might not work for you. You might have to try several types of treatments to find one that works for you.
You can work with your doctor to find a management technique that can help. This depends on factors like:
- Your age
- Severity of your endometriosis
- Severity of your symptoms
- If you want to become pregnant in the future
You also might decide that you don’t want to treat the endometriosis.
We’ve covered more about treating endometriosis in the ‘Treating endometriosis’ section of the page.
Endometriosis is a long-term condition. It can sometimes get better by itself without treatment, but it can also get worse if it isn’t treated. There isn’t a cure for endometriosis.
Endometriosis doesn’t cause infertility but it can be linked to problems with fertility, especially if the endometriosis tissue grows over the reproductive organs. It’s important to know that even if you have severe endometriosis, you can still have a healthy pregnancy. If you’re worried about your fertility, you can speak to your doctor for more advice.
If you have endometriosis, you won’t be able to see the tissue externally. But if you have a laparoscopy (a surgical procedure that involves inserting a camera called a laparoscope, into the pelvis through a small cut near the belly button), your surgeon might see endometrial tissue.
The tissue could be red, blue, brown or white and can be different shapes, sizes and textures.
PCOS (polycystic ovarian syndrome) and endometriosis both affect the female reproductive system and can affect fertility, but their causes and symptoms are very different.
Endometriosis is a condition where cells that are like those lining the womb (uterus) grow in other parts of the body.
PCOS is a hormonal imbalance. Many people with PCOS are resistant to the action of insulin in your body, so produce higher levels to counteract this. This can then lead to the increase in other hormones like testosterone. This can cause irregular periods, excess hair growth and acne.
While both conditions have some similar symptoms like heavy bleeding and difficulty getting pregnant, each condition has distinctly different symptoms.
1Subject to availability. Eligibility criteria may apply. Charges may apply.
2Access to prescription-only treatment is subject to an online consultation with a clinician to assess suitability. Subject to availability. Charges apply.
21Available in selected England stores only. Subject to availability, eligibility criteria apply.
