FAQS
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 Question
- 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?
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?
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; 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
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.
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.
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.
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.
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.
