Each year we receive hundreds of emails and phone calls from those with endometriosis and their supporters asking for more information about endometriosis. The information below contains answers to the most common questions we receive.
We hope this information will help you make any decisions you may face, but not to replace the medical advice from healthcare professionals. Please do continue to talk to your doctor if you are worried about any medical issues concerning endometriosis.
General
What is endometriosis?
How did I get endometriosis?
Is endometriosis infectious or a form of cancer? Can endometriosis turn into cancer?
Can endometriosis be prevented?
Is it true that endometriosis only affects white women in their 30s who have delayed childbearing?
Is the oestrogen in soya products good or bad for endometriosis?
What are dioxins? Are they making endometriosis worse?
Can Endometriosis UK recommend a specialist, surgeon or treatment centre?
How can I find a consultant who specialises in endometriosis?
How do I get a second opinion? Can I be referred to another consultant?
Pain management
How do I cope with pain?
For how long should I feel soreness/pain for after my laparoscopy?
What is the correct way to take anti-inflammatories (NSAIDs) for endometriosis pain?
How can I find out about self-management courses for endometriosis?
I’m not depressed, so I don’t understand why my doctor has suggested taking anti-depressants to help with endometriosis pain.
Fertility and sex
Can I get pregnant if I have endometriosis?
My doctor told me pregnancy will cure my endometriosis, should I to try to get pregnant?
Sex is painful – is it making the endometriosis worse?
I am having difficulty getting pregnant, what shall I do?
Support
Where can I find out about sources of support for endometriosis?
Is there a local endometriosis support group in my area?
I am feeling very isolated and alone. What can I do?
My friends, family, or partner are having difficulty in understanding how I feel or why I can’t join in. How can I help them to understand?
Treatment
Should I have treatment for my endometriosis?
Which is the right treatment for me?
I don’t want to take drugs/have surgery. What else can I do?
How common is recurrence of endometriosis after having a hysterectomy/menopause?
Do I have to have a hysterectomy? Will it cure my endometriosis?
Will endometriosis come back if I take HRT?
What is endometriosis?
Endometriosis is a condition where cells similar to the ones lining the womb are found elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions). The condition affects 1.5million in the UK; approximately 1 in 10 women and those assigned female at birth from puberty to menopause, although the impact may be felt for life.
There is no cure for endometriosis and the cause is not known.
How did I get endometriosis?
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.
Is endometriosis or a form of cancer? Can endometriosis turn into cancer?
Endometriosis is not contagious or an infection – it cannot be passed from person to person through contact. Endometriosis is NOT a form of cancer, however, 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. This would be an extremely rare event.
Can endometriosis be prevented?
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 professional. The decision about which treatment to choose should depend on several factors:
The individual circumstances of the patient
Their age
The severity of their symptoms
The desire to have children
The severity of the disease
Read more about information on the endometriosis treatments that are available.
Is it true that endometriosis only affects white women in their 30s who have delayed childbearing?
Endometriosis can affect all women and girls and those assigned female at birth of a childbearing age, regardless of race or ethnicity.
Is the oestrogen in soya products good or bad for endometriosis?
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.
What are dioxins? Are they making endometriosis worse?
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.
Can Endometriosis UK recommend a specialist, surgeon or treatment centre?
We are unable to recommend specific specialists, surgeons 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.
How can I find a consultant who specialises in endometriosis?
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 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.
How do I get a second opinion? Can I be referred to another consultant?
It is important to feel able to communicate with your healthcare professional. 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. NHS direct has a useful guide to getting a second opinion on the NHS.
How do I cope with pain?
There are many strategies to cope with pain. Please read our section on pain management.
For how long should I feel soreness/pain for after my laparoscopy?
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. If you have had surgical treatment at the same time as your laparoscopy this may mean you will take longer to recover. The extent of surgery would also affect the duration of pain after an operation. If you are concerned about how you are feeling, or have severe pain or other symptoms – please contact your GP or hospital.
What is the correct way to take anti-inflammatories (NSAIDs) for endometriosis pain?
NSAIDs, such as Ibuprofen, Ponstan (Mefanemic Acid), and Voltarol (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 must be 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.
How can I find out about self-management courses for endometriosis?
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.
I’m not depressed, so I don’t understand why my doctor has suggested taking anti-depressants to help with endometriosis pain.
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 have a side effect of helping to 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 have side effects, so please discuss this treatment in full with your doctor and make sure that you have understood all the aspects.
Can I get pregnant if I have endometriosis?
Endometriosis can cause infertility if it is growing over the reproductive organs. It is estimated that approximately half of those with endometriosis may have difficulties in becoming pregnant. This statistic also means that 50% should have no difficulties. If you are concerned about fertility, please speak to your doctor and together you can decide the best course of action. We have a booklet available about endometriosis and fertility.
My doctor told me pregnancy will cure my endometriosis, should I to try to get pregnant?
Endometriosis is a potentially chronic condition and current approaches do not cure endometriosis. The hormones released when pregnant temporarily suppress the menstrual cycle – which can alleviate symptoms. Often symptoms return after giving birth and their menstrual cycle has returned. 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.
Sex is painful – is it making the endometriosis worse?
Pain during or after intercourse is one of the symptoms of endometriosis. Having sex shouldn’t make the condition worse – but it could temporarily increase your pain. By talking with your doctor, 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. Please visit www.endometriosis.org for a useful article on painful sex and how to tackle some of the issues regarding painful intercourse.
I am having difficulty getting pregnant, what shall I do?
If you are concerned about your fertility, please speak to your doctor and together you can decide the best course of action. We have a booklet available about endometriosis and fertility.
Where can I find out about sources of support for endometriosis?
Endometriosis UK has a support network – we have a free Helpline and local groups that meet in cities across the UK. For more information, please visit our support pages.
Is there a local endometriosis support group in my area?
Our local support groups are all run by our volunteers and presence of a support group will depend on the availability of volunteers in that area. Please click here to visit our local group page, to find out if there is a group in your area and what you can do if there isn't one.
I am feeling very isolated and alone. What can I do?
Having endometriosis can make you feel very isolated, either because the symptoms have an affect on your social life and relationships or because you feel as though no-one around you understands. We have a free Helpline, which is staffed by trained volunteers who are there to listen and offer support and information. Please 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.
My friends, family, or partner are having difficulty in understanding how I feel or why I can’t join in. How can I help them to understand?
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 of 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.
Should I have treatment for my 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 professional. The patient should be aware of all the benefits and risks associated with a form of 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 also any issues surrounding fertility.
Which is the right treatment for me?
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.
I don’t want to take drugs/have surgery. What else can I do?
The decision as to whether or not to take drugs or have surgery ultimately lies with the patient and only they can make that decision after consulting their doctors. The alternatives are trying to control symptoms with complementary therapies, nutrition or self management. Many of those with endometriosis have found their symptoms have improved with complementary therapies such as 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. Please see our publications section for details of further information.
How common is recurrence of endometriosis after having a hysterectomy/menopause?
This is not common. It is more likely after hysterectomy if the ovaries have been left behind with or without disease. This can happen sometimes because endometriosis surgery can be very difficult. Endometriosis after the menopause is thankfully rare as a result of markedly reduced ovarian oestrogen production but can occur when HRT is used.
Do I have to have a hysterectomy? Will it cure my endometriosis?
Hysterectomy treats endometriosis ONLY on the organs that were removed. If the endometriosis confined to womb and the period pains are only due to this condition, hysterectomy would minimise those symptoms. If any endometriosis was left behind, or was growing elsewhere inside the body, you may be likely to continue to experience symptoms.
Will endometriosis come back if I take HRT?
There is not enough evidence to say whether endometriosis will come back when using HRT. It would depend on the individual circumstances. Patients have taken HRT and not had a recurrence of endometriosis but as HRT contains oestrogen it can stimulate any endometriosis remaining after a hysterectomy. If HRT is being taken as an “add back” to a GnRH drug such as Zoladex, then it is given as a small dose to help to counteract the side effects of the drug. That GnRH drug itself will be working to stop the endometriosis growing. The use of HRT has come under increasing scrutiny in recent years and the doctor should give a clear indication for its use. The lowest possible dose to relieve symptoms should be used. HRT has side effects and these should be discussed in full with your doctor.
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