Endometriosis FAQs

Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue.

Endometriosis is most commonly found on the lining of the pelvis (peritoneum) and may occur in the ovaries and involve other pelvic organs, like the bowel or bladder. Less commonly, endometriosis can also be found outside the pelvis, such as in the chest.

Endometriosis affects 10% of women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition.
 

The cause of endometriosis is not known. However, it has not happened because of anything you have done, or not done. Genetic, environmental and anatomical causes may contribute to the development of endometriosis. Read more about the various theories that have been suggested.

Endometriosis is NOT a form of cancer and research shows that the chance of getting cancer from having endometriosis is very low. Every single benign tissue in our bodies has the potential to turn into cancer; therefore it could be argued that deposits of endometriosis could turn into cancer. However, it could also be coincidence to have both endometriosis and cancer.

Currently, there is no way of preventing endometriosis. There are ways of managing symptoms and of managing the disease.

The type of treatment should be decided in partnership between the patient and their healthcare practitioner. The decision about which treatment to choose should depend on several factors:

• Your age
• The severity of your symptoms
• The severity of your endometriosis
• If you’ve had any previous treatment
• Risks or side effects of treatments
• Your medical history or health risks
• How long you intend to stay on treatment
• Whether or not you want children, and when

Read more about information on the endometriosis treatments that are available.

Endometriosis affects 10% of women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition.

You may have read that certain diets can help to manage endometriosis symptoms. There is little high-quality evidence for this but there is a growing understanding of the role of nutrition for symptom relief. Research is ongoing, and many people report that making changes to their diet helps to relieve symptoms. For example, some people find that certain foods cause bloating or constipation and this can make their pain worse, particularly if they experience bowel symptoms from their endometriosis, but what works for one person may not work for another.

You may have heard that soya should be avoided as it contains oestrogen. In theory all oestrogen can encourage the growth of endometriosis but that is no reason to avoid soya as it would require very large amounts to have a significant effect. For more information on the role of diet and nutrition please see our publication on diet and complementary therapies for endometriosis.

Dioxins are chemicals found in our environment. They are released into the atmosphere from the manufacturing and burning of items such as paper and plastics. There is a theory that certain toxins in our environment, such as dioxin, can affect the body, the immune system and reproductive system and cause endometriosis. Research studies have shown that when animals were exposed to levels of dioxin, they developed endometriosis. This theory has not yet been proven for humans.

We are unable to recommend specific specialists, surgeons, hospitals or treatment centres for legal reasons. Additionally, we are also aware that one person's experience and needs of a consultant can hugely differ from another. We recommend seeking out institutions that have been peer-reviewed by other medical professionals and deemed centres of excellence. We feel that a good place to start looking for this information is through the British Society for Gynaecological Endoscopy (BSGE) website. The BSGE accredited specialist endometriosis centres have consultants who are specialists in the field of endometriosis. The centres are reviewed annually.

For legal reasons, Endometriosis UK is unable to recommend a particular doctor or hospital. For a variety of reasons, not all gynaecologists will have a particular specialist interest in endometriosis. In the first instance, you could ask your GP if they know which local gynaecologists are interested in endometriosis or pelvic pain. As recommended in the question above, we recommend visiting the BSGE website and viewing their list of accredited endometriosis centres.

It is important to feel able to communicate with your healthcare practitioner. They should check your understanding of the condition, explain any medical terms and let you ask questions. If you are not happy or don’t feel comfortable with the advice or treatment from your GP or consultant, do ask for a second opinion. Before you get a second opinion it is worth considering whether this is due to a breakdown in communication. If you do not understand an explanation you have been given, you could ask your doctor to explain it to you again. Your GP will be able to give you advice on getting a second opinion from a consultant. If you wish to see a different GP, you can make an appointment with another GP in the practice or try to change practices. The NHS website has a useful guide that explains your choices in seeking care. 

There are many strategies to cope with pain. Please read our section on pain management.

Everybody will feel differently after a laparoscopy. Some people may feel okay after a day or two, others may take up to a week or two to get over the effects of the anaesthetic. It’s normal to feel discomfort and pain after surgery, even though the cuts may be small, they will take time to heal and can be painful to touch. The more extensive the surgery the longer it will take to heal and for pain to settle. Although you should start to feel better within two weeks of surgery, depending on the type of surgery it may take up to 8 weeks to make a full recovery. If you are concerned about how you are feeling or have severe pain or other symptoms – please contact your GP or hospital.

NSAIDs, such as Ibuprofen, Mefenamic Acid, and Diclofenac, are anti-inflammatory drugs that can help to reduce pain – but they do not work in the same way as normal painkillers such as paracetamol. They work by reducing the production of the pain-causing chemicals (prostaglandins) in the body.  For them to be effective, they work better when taken before the prostaglandins are produced. E.g. your doctor may ask you to start taking them a few days BEFORE your period is due. Even though you may not be in pain then, they will be stopping or reducing the production of the prostaglandins – so the pain should be reduced when your period does start. For more information on pain management, please click here.

Self-management courses (Expert Patient Programme) enable people living with long term conditions to manage their symptoms. They run over a 6-week period for people with chronic conditions. These courses have a proven track record of benefiting those living with a long-term illness and should not be under-estimated. The courses are free of charge. Your GP or local Primary Care Trust will be able to provide information on courses. For more information about self-management and courses, ask your GP.

Neurotransmitters are chemicals in the body that help to regulate messages to the brain. These messages include: pain, pleasure, anxiety, panic, arousal, and sleep. Although anti-depressants are produced to treat depression – they also help block neurotransmitters carrying messages of pain into the brain. Anti-depressants are often prescribed for the management of chronic pain.

Although they are effective for some, they don’t work for everyone, and they can have side effects. Please discuss treatments in full with your doctor or healthcare provider.

Endometriosis does not necessarily cause infertility but there is an association with fertility problems, although the cause is not fully established. Even with severe endometriosis, natural conception is still possible. It is estimated that 60-70% of those with endometriosis can get pregnant spontaneously. If you are concerned about fertility, please speak to your doctor and together you can decide the best course of action.  More information on endometriosis, fertility and pregnancy can be found here.

Endometriosis isn’t cured nor does it disappear during pregnancy, this is a myth. Some may notice an improvement to their symptoms with periods stopping and endometriosis being less active. However, oestrogen is still produced in early pregnancy, this supports the baby until the placenta takes over so symptoms can still be present. Often symptoms return after giving birth when the menstrual cycle has returned.

Adhesions/scar tissue is also common with endometriosis, as the uterus grows this can also cause pain due to tissues being pulled.

The decision to have a child should depend on lots of things and only you will know when you are ready to start a family, don’t feel pressured into trying for a pregnancy if you are not ready.

Pain during or after intercourse is a common symptom of endometriosis. Having sex shouldn’t make the condition worse – but it could temporarily increase your pain. By talking with your doctor or healthcare practitioner, you can both agree to explore courses of treatment which may help to alleviate this symptom. Being open and honest with your partner and communicating how you both feel, both physically and emotionally should help you both to understand what is happening. More information can be found here.

If you are concerned about your fertility or finding it difficult to get pregnant, please speak to your doctor and together you can decide the best course of action. More information on endometriosis, fertility and pregnancy can be found here.

Endometriosis UK has a support network – we have a free Helpline, nurse support helpline, web chat and online community. We also have local support groups that meet across the UK. For more information, please visit our support pages.

Our support groups are all run by our volunteers, they offer valuable support and information to those affected by endometriosis. If you would like to connect to those from your area, you can search local support groups here.

Having endometriosis can make you feel very isolated, either because the symptoms effect your social life and relationships or because you feel as though no-one around you understands. We have a free Helplines, one is staffed by trained volunteers who are there to listen and offer support and information, the other is ran by experienced nurses. Please call or book a nurse support call if you feel you would like to talk to someone about endometriosis.

If you feel isolated and would like to meet others with endometriosis living in your area, please visit our support group pages to find your nearest local group. We run an online support group for those who are unable to attend a local group. Each month our trained online support group leaders chose a topic to focus on and discuss with group members online. We also host a Health Unlocked Forum, a free discussion forum whether you can connect with others who have endometriosis. You can find out more about our forum and how you can join on our online community pages.

If you are feeling very low, and don’t feel as though you can speak to your family, friends or partner, please call the Samaritans on 08457 90 90 90 as they have trained volunteers who will be able to help you and are there to listen, the helpline is open 24 hours a day.

Each of the above will have different reasons for not understanding. It may help you to try and think of what they might be. They may feel helpless or blame themselves. They might not know how to act around you. They could be worried about how to talk to you and what to say. They may feel shut out, neglected, or miss doing the things you used to do together. The key to any good relationship is communication. Being open and honest is the best way to move forward. If you are happy to discuss your illness, let them know what is happening, tell them how you feel and how the condition is affecting you. If they do not know what is happening, they don’t have the chance to understand.

It is hard for people to understand something that they have not experienced themselves. You could give them the number of our free Helpline because our volunteers would be happy to talk to them. They may find it easier to ask questions to a volunteer they do not know rather than ask you. You could also ask them to visit our website or provide them with copies of our leaflets and publications about endometriosis.

The decision about whether or not to have treatment is up to the individual. Any decisions should be made in partnership with the patient and their healthcare practitioner. The patient should be aware of all the benefits and risks associated with each treatment and be comfortable with it. It is not compulsory to have treatment for endometriosis and the decision whether to treat it will depend upon the severity of the disease and symptoms, and any issues surrounding fertility. More information on treatment options can be found here.

The “right” treatment is the one that works for you and helps you. Everyone is different and will respond differently to each treatment. People’s view on surgery and side effects of medication vary, and these will need to be taken into account as well. You may have to try several types of treatment to find one that you are comfortable with. Alternatively, you may decide to not treat the endometriosis.

The decision as to whether or not to take drugs or have surgery ultimately lies with the you and only you can make that decision after consulting your doctor. The alternatives are trying to control symptoms with complementary therapies, although more research is needed to fully understand the benefits to managing endometriosis symptoms or self-management. Many of those with endometriosis have found their symptoms have improved with complementary therapies such as physiotherapy, acupuncture, homeopathy, reflexology and osteopathy. It is wise to seek help from a qualified practitioner. A change of diet has also been found to have positive benefits including cutting out or reducing the amount of red meat, wheat and dairy products.

For many, endometriosis symptoms will improve with menopause. This is because the ovaries stop producing oestrogen. However, there is still oestrogen in the body, although at a much lower-level, oestrogen is also produced from fat tissue. Some may be taking hormone replacement therapy (HRT) to help with menopausal symptoms. HRT contains oestrogen which can flare endometriosis symptoms or cause recurrence, the actual recurrence rate is unknown but overall recurrence is less post menopause than pre-menopause.

After menopause, adhesions/scar tissue can continue to cause pain, and the effected nerves can become over sensitised leading to chronic pelvic pain.

Unfortunately, there is no cure for endometriosis. A hysterectomy is the surgical removal of the uterus, endometriosis is a condition that affects outside of the uterus so although a hysterectomy would stop periods it wouldn’t treat the endometriosis and pain symptoms may still be present. A hysterectomy alongside removal of endometriosis, would be the recommended surgical option to reduce the risk of recurrence. However, there is a still a possibility that endometriosis can return.

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