Endometriosis is a common condition in which small pieces of the womb lining (the endometrium) are found outside the womb. This could be in the fallopian tubes, ovaries, bladder, bowel, vagina or rectum. It can affect many aspects of a woman’s life including her general physical health, emotional wellbeing and daily routine. Find out more about this condition, access the expert interview, read another woman’s story, find out the truth behind common myths and see the research we are funding.
Endometriosis affects around 2 million women in the UK. Most of them are diagnosed between the ages of 25 and 40.
Endometriosis is a long-term (chronic) condition that causes painful or heavy periods. It often causes pain in the lower abdomen (tummy), pelvis or lower back. It may also lead to lack of energy, depression and fertility problems.
Endometriosis is a common condition in which small pieces of the womb lining (the endometrium) are found outside the womb. This could be in the fallopian tubes, ovaries, bladder, bowel, vagina or rectum
Endometriosis is a chronic condition that causes painful or heavy periods. It often causes pain in the lower abdomen, pelvis or lower back. It may also lead to lack of energy, depression and fertility problems.
However, the symptoms of endometriosis can vary and some women have few symptoms or no symptoms at all.
There are a few theories about the causes of endometriosis. The most common theory is that of retrograde menstruation – when the womb lining does not leave the body properly during a period and embeds itself onto the organs of the pelvis.
Every month the endometriosis cells behave like the cells lining the womb. The cells grow during the menstrual cycle and bleed.
Like the lining of the womb, the endometriosis tissue goes through the normal process of thickening and shedding as part of the normal menstrual cycle. However, the endometriosis tissue has no way of leaving the body. This leads to pain, swelling and sometimes damage to the fallopian tubes or ovaries, causing fertility problems.
There is no known cure for endometriosis. Symptoms can often be managed with painkillers or hormone treatments, which help prevent the condition from interfering with your daily life. Surgery can sometimes be used to improve symptoms and fertility.
A healthy diet can improve energy levels and help regulate bowel movements and sleep patterns.
Pregnancy sometimes reduces the symptoms of endometriosis, although symptoms often return once the menstrual cycle returns to normal.
Endometriosis can be a difficult condition to deal with both physically and emotionally. Charities such as Endometriosis UK and the SheTrust can offer advice and support to help you cope.
One of the main complications of endometriosis is difficulty getting pregnant, or not being able to get pregnant (infertility).
Surgery can improve fertility by removing endometriosis tissue, but there is no guarantee that this will allow you to get pregnant.
Endometriosis is unlikely to put your pregnancy at risk. However, there is some evidence to show that women with endometriosis are slightly more at risk of complications during pregnancy such as pre-eclampsia, a premature birth or the need for a caesarean section.
Symptoms can vary between individuals and some women have no symptoms at all.
· painful or heavy periods
· pain in the lower abdomen, pelvis or lower back – this varies as some women have this all the time, others only during menstruation or when they go to the toilet.
· pain during sexual intercourse
· bleeding between periods
· fertility problems
· discomfort when passing urine
· bleeding from your back passage (rectum)
· bowel blockage (if the endometriosis tissue is in the intestines)
· coughing blood (if the endometriosis tissue is in the lung -rare)
How severe the symptoms are depends largely on where in your body the endometriosis is, rather than the amount of endometriosis you have. A small amount of tissue can be as painful as, or more painful than, a large amount.
The exact cause of endometriosis is unknown although there are several theories.
This occurs when the womb lining (endometrium) flows backwards through the fallopian tubes and into the abdomen, instead of leaving the body as a period. This tissue then embeds itself onto the organs of the pelvis and grows.
It is possible that this is how endometriosis occurs in some women and is the most commonly accepted theory for endometriosis. However, it does not explain why the condition can occur in women who have had a hysterectomy.
Endometriosis is sometimes believed to be hereditary. It is more common in Asian women than in white (Caucasian) women. It is rare in women of African-Caribbean origin. This suggests that genes may play a part.
Spreading through the bloodstream or lymphatic system
Although it is not known how, endometriosis cells are believed to get into the bloodstream or lymphatic system, this could explain how, in very rare cases, the cells are found in places such as the eyes or brain.
Many women with endometriosis are said to have lower immunity to other conditions. However, this may be a result of the endometriosis, rather than the cause of the disease.
Endometriosis may be caused by certain toxins in the environment, such as dioxins (chemical by-products), affecting the body and its immune system.
Metaplasia is the process of one type of cell changing into another to adapt to its environment. It is this development that allows the human body to grow in the womb before birth.
It has been suggested that some adult cells retain the ability they had as an embryo to transform into endometrial cells.
The main complication of endometriosis is difficulty getting pregnant (subfertility) or not being able to get pregnant at all (infertility). In some cases there may also be adhesions or ovarian cysts.
The longer someone has endometriosis, the greater the chance that their fertility will be affected.
It is estimated that up to 70% of women with mild to moderate endometriosis will be able to get pregnant without treatment. Pregnancy is also known to reduce the symptoms of endometriosis, although the symptoms may return once the menstrual cycle returns to normal.
Surgery can improve fertility by removing endometriosis tissue, but there is no guarantee that this will allow you to get pregnant.
Adhesions and ovarian cysts
Adhesions are 'sticky' areas of endometriosis tissue that can fuse organs together. Ovarian cysts (fluid-filled cysts in the ovaries), can occur when the endometriosis tissue is in or near the ovaries. In some cases, ovarian cysts (endometriomas) can become very large and painful.
Both of these complications can be removed through surgery, but may recur if the endometriosis returns.
Endometriosis can only be diagnosed with an examination called a laparoscopy. Your GP may therefore refer you to a specialist if they suspect you have endometriosis
For this procedure, you will be given a general anaesthetic and a laparascope passed into the body. The laparoscope has a tiny camera that transmits images to a video monitor so that the specialist can see the endometriosis tissue.
The specialist will then either take a small sample for laboratory testing or insert other surgical instruments to treat the endometriosis.
The laparoscope will be inserted depending on where in your body the specialist thinks the endometriosis tissue is. In most cases the laparoscope is usually inserted into the pelvis through the belly button. You can usually go home the same day if you have had a laparoscopy.
There is no cure for endometriosis and it can be difficult to treat. The aim of treatment is to ease the symptoms so that the condition does not interfere with your daily life.
The treatment is given to relieve pain, slow the endometriosis growth, improve fertility and prevent the disease from recurring.
Treatment decisions are based on your age, your pain symptoms and whether you want to become pregnant
If your symptoms are mild and you have no fertility problems you may not require treatment and in about a third of cases, endometriosis gets better by itself.
Non-steroidal anti-inflammatories (NSAIDs), such as ibuprofen and naproxen, are usually the preferred painkiller used. They act against the inflammation (swelling) caused by endometriosis, as well as helping to ease pain and discomfort. It is best to take NSAIDs the day before (or several days before) you expect the period pain.
Paracetamol can be used to treat mild pain. It is not usually as effective as NSAIDs, but may be used if NSAIDs cause any side effects, such as nausea, vomiting and diarrhoea.
Codeine is a stronger painkiller that is sometimes combined with paracetamol or used alone if other painkillers are not suitable. However, constipation is a common side effect, which may aggravate the symptoms of endometriosis.
The aim of hormone treatments is to limit or stop the production of oestrogen in your body. This is because oestrogen encourages endometriosis to grow and shed. Without exposure to oestrogen, the endometriosis tissue can be reduced, which helps to ease your symptoms. However, hormone treatment has no effect on adhesions ('sticky' areas of endometriosis, which can cause organs to fuse together) and cannot improve fertility.
Hormone treatments stop the production of oestrogen by putting you in either an artificial state of pregnancy or an artificial state of menopause, which stops your periods.
Once your periods have stopped, the endometriosis is no longer aggravated. However, it is important to note that most of these treatments are not contraceptives.
There are four broad types of hormone-based treatment:
Progestogens are synthetic hormones that behave like the natural hormone progesterone. They stop eggs from being released (ovulation), which can help to shrink endometriosis tissue. However, they can have side effects such as bloating, mood changes, irregular bleeding and weight gain.
The Mirena intrauterine system, a T-shaped contraceptive device that fits into the womb and releases progestogen, has been successfully used for the treatment of endometriosis.
Also known as testosterone derivatives, antiprogestogens are synthetic hormones that bring on an artificial menopause by decreasing the production of oestrogen and progesterone. Side effects can include weight gain, acne, mood changes and the development of masculine features (hair growth and deepening voice).
The combined oral contraceptive pill
The combined contraceptive pill contains the hormones oestrogen and progestogen. Although it is not officially licensed for the treatment of endometriosis, the pill can help relieve milder symptoms and can be taken over long periods of time. It stops the function of the ovaries, which in turn stops the menstrual cycle.
Gonadotrophin-releasing hormone (GnRH) analogues
Like antiprogestogens, GnRH analogues are synthetic hormones that cause an artificial menopause. They are taken as a nasal spray, implant or injection and work in a similar way to gonadotrophin-releasing hormone (a natural female hormone).
They often have side effects such as hot flushes, vaginal dryness and low libido, so they are recommended alongside hormone replacement therapy (HRT), which is usually used to reduce the symptoms of menopause.
Surgery can be used to remove or destroy areas of endometriosis tissue, which can help improve symptoms and fertility. The kind of surgery you have will depend on where the tissue is. The options are:
· Laparoscopic surgery
During a laparoscopy endometriosis tissue can be destroyed or cut out using delicate instruments that are inserted into the body. This is also known as keyhole surgery.
Laparoscopy is now commonly used to diagnose and treat endometriosis. Ovarian cysts or endometriomas, which are formed as a result of endometriosis, can also be easily treated using this technique, which can be used alongside medication such as GnRH analogues.
Although this kind of surgery can relieve your symptoms, they can sometimes recur, especially if some endometriosis tissue is left behind at the time of surgery.
This is major surgery that is used if your endometriosis is severe and extensive. Recovery time is longer than that for keyhole surgery.
If keyhole surgery and other treatments have not worked and you have decided not to have any more children, a hysterectomy (removal of the womb) can be an option. However, this is rarely required.
In addition to the treatments above, lifestyle factors may also help living with the condition. Women can feel quite low in mood because of these symptoms and therefore counselling, support groups and self-management courses may be helpful. Taking regular exercise and managing fluid intake can help (see expert interview for more information).
Following a healthy diet can be beneficial:
· Increased ability to tolerate medical treatments and side effects of treatment
· Increased energy levels
· Regulation of bowel movements
· improved sleep
If you are affected by endometriosis it is important to understand that it is a recurrent and chronic disease and symptom management is important so that you enjoy the best possible quality of life.
"I was 19 when I first went to the doctors, they didn’t seem to understand my symptoms of intense pain with my periods. I was told by my GP “Just be grateful – it would be worse if you weren’t on the pill!” I was young and didn’t like to be a nuisance, so I didn’t go back but instead just put up with the pain, which gradually worsened.
When I was 22 I went to another doctor who was more sympathetic. She thought that I had IBS (irritable bowel syndrome) but the pain still carried on. Eventually I had a laparoscopy (an operation to look inside the abdomen with a camera) and that showed that I had Endometriosis.
Over the next 10 years I underwent several more operations – one of which was a laparotomy – a more invasive operation to remove a cyst the size of a grapefruit from one of my ovaries. This cyst was caused by endometriosis. During my 20’s I also went through 3 cycles of IVF, unfortunately without success. Things came to a head when at the age of 35 I had a hysterectomy with one of my ovaries also being removed. My situation was very severe and the Hysterectomy improved things; the operation gave me a new lease of life and I was able to do more exercise as a result - I even dropped 2 dress sizes!
After the Hysterectomy I was put on the pill to keep my hormone levels suppressed and prevent further Endometriosis. This worked well for me. In later years I had some other advice from an alternative therapist who wasn’t a medical practitioner and they advised me not to take the pill. Stupidly, I didn’t question it and did so. This caused problems and resulted in a further cyst developing on my remaining ovary.
My advice to other women would be, don’t be afraid to get a second opinion if you feel you are not being listened too. The hysterectomy improved things for me, but everyone is different. Ask about the different options available and also be clear about the consequences of any treatment you are having. I would urge you though to be cautious of taking advice from people who don’t know about your condition or medical history."
If you would like to tell us your story so we can help and inform other women; there is more information available HERE
This interview was recorded in June 2009.
Today our topic is endometriosis and we discuss what it is what effects it can have in terms of health and quality of life and what can be done to alleviate symptoms. Endometriosis affects 1 in 10 women below the age of 50 so in fact around 2-3 million women in the UK. These women experience a range of symptoms including severe pelvic pain period pains, painful sexual intercourse and impaired fertility. Sufferers may have to take time off work on average up to 45 days annually and undergo the agonies of failure to conceive. Many women undergo risky, extensive and repeated surgery, some estimates indicate that the disease costs UK society and the NHS over £2 billion a year, but the emotional costs are untold. Consultant Gynaecologist at Queen Charlottes and Chelsea hospital, Gillian Rose and who established the country’s first clinic dedicated to endometriosis is here with me today to discuss the topic.
Hello Gill and thanks for being here today
Hello Penny, thanks for inviting me
So what is endometriosis?
The endometrium is the lining of the uterus or the lining of the womb, the finding of endometrium outside of the uterus is endometriosis, the endometrium most commonly outside of the uterus is found in the pelvic area, involving the back of the womb, the utero-sacral ligaments, the pouch of Douglas the ovaries but also it may involve the bowel and bladder and other organs of the pelvis
And what are the symptoms to look for?
Well the first symptom to mention most importantly is painful periods or dysmenorrhoea, however the pattern of the pain in women who have endometriosis very typically is that the pain starts before the actual onset of bleeding of the period, some women find the pain gets worse leading up to beginning of the period and some women find that actually the onset of their bleeding relieves the symptom some women can even have pain that continues after the end of the period. The other things to look for are painful sex, pain on opening your bowels and other associated bowel symptoms. Some women present during investigations for infertility and some ladies have no symptoms at all and it is co-incidental finding. Clearly having pain can lead to women feeling very tired and other women can have pain that develops at the time of ovulation or even throughout the cycle, but even then it is nearly always worse around the time of the period.
Why do some women develop endometriosis?
Endometrium and therefore endometriosis is totally dependant on the presence of oestrogen so endometriosis is seen in all women who are having periods from puberty though to menopause. There are definitely some factors which seem to increase the likelihood of women getting endometriosis and this relates to the amount of bleeding that you have during your period. So women whose periods start very young, women who bleed very frequently, women who have very heavy periods or prolonged periods are at increased risk of getting endometriosis. There does also seem to be a genetic factor in that first degree relatives have a seven times higher chance of developing endometriosis and this also increases the chance of women having it.
And is there also a particular age at which women get endometriosis?
Because it relates to women having periods it’s obviously most common in women in their 20s and 30s and 40s. Having said that it is very important to remember that young teenage women can present with endometriosis and to consider this diagnosis in young women with symptoms.
And what affect does it have on sufferer’s lives?
Well it can have a number of very important effects, clearly if you are having very bad periods every month so severe that you are missing two or three days of work this is going to impact on your job. If you are having painful sex this can cause marked difficulties in relationships and obviously also affect trying to become pregnant. For women who are living continuously with pain this is very draining and can seriously affect quality of life and things you are able to do.
So is it true that there is currently no simple diagnostic test for the disease?
Well the factors that will help making the diagnosis of endometriosis are firstly taking a very careful history and listening to what the patient is telling you, and also doing a careful examination where you are certainly looking for specific points that may be tender. An ultrasound scan may be valuable if there’s a cyst present and can help to identify any endometrioma which is a chocolate cyst or an endometriosis ovarian cyst. Sometimes in specific diseases particularly where the bowel may be involved an MRI scan may have a value. And there is a blood test called the CA125 which is a marker unfortunately that is not specific to endometriosis but is a marker of inflammation in the pelvis and therefore although it may help identify it is not specific. So to actually definitely make a confirmed diagnosis of endometriosis this does require an operation called a laparoscopy where a telescope is inserted just underneath the umbilicus and one inspects the pelvis itself to see if endometriosis is present. This is an operation and it does carry small risks so it is important to way up the benefits and risks of this when deciding whether to proceed with this operation.
I see – and what about heavy periods is that a symptom of endometriosis?
No it is a commonly made mistake that it is a symptom of endometriosis and actually it is a factor that is related to the cause of endometriosis, we recognise that most women when having a period some of the blood actually runs back through your fallopian tubes into the pelvis, that’s called retrograde menstruation and that blood is just cleared away but in some women there is not a complete clearance and is one of the factors in initiating endometriosis For that reason I believe that women who are at risk of endometriosis or have endometriosis are better suppressing their periods so there is less opportunity for this to occur.
What treatments are available?
Well the approach to treatment is either through medication or drugs or surgery. The aim of medical treatments is to suppress periods, to suppress menstruation and therefore to suppress endometriosis. Obviously if pain occurs at the time of you periods and you stop your periods you are going to improve symptoms and improve quality of life. Medical treatment will suppress the disease but it will not completely eliminate the disease. The alternative approach is surgery where the disease is actually cut out or destroyed and removed, unfortunately however, endometriosis is a recurrent and chronic disease. The type of treatment that is appropriate to an individual needs careful discussion with a specialist to look at the pros and cons of each and understand which might be appropriate to the condition the patient is presenting with.
Is there anything else that can make a difference to living with endometriosis?
Yes as I have mentioned endometriosis is both a chronic disease and a recurrent disease and therefore I think it is very important for patients as much as to take control of the disease and their bodies as much as they can. Now the things that I believe do make a difference. It is very important to pay attention to diet. The bowels run very closely by all the gynaecological organs and so a disease like endometriosis can certainly cause irritable bowel syndrome and other bowel related symptoms so paying attention to ones diet is really essential. Any woman who has excessive bloating or constipation is going to put more pressure on the areas of endometriosis and cause more pain. I have certainly found a lot of women have told me that by reducing wheat in their diet this has had a significant impact on their pain. The other thing similarly in terms of improving bowel function is to ensure that you are drinking plenty of fluids at least 1.5 to 2 litres of water a day. And finally I absolutely believe that regular exercise, ideally 3 times a week for 40 minutes is very important. This helps improve your immune system, which helps your body work against the disease, it helps elevate endorphins which will help both your mood and are natural pain killers so that you will have the need for less medical pain drugs and will generally give you more energy to cope with the disease.
So what’s the next step, is there anything being done to find a cure?
Well being honest I don’t think the cure is just around the corner, although of course there is large amount research being done in the direction. In the shorter term I think the things that are really important are to try and understand more about why some women get endometriosis, to identify those women who are at high risk of getting endometriosis and to take steps to try and prevent endometriosis developing in the first place. Because obviously preventing the disease is in the long term much better than trying to then treat it when the symptoms, the pain, the infertility and the problems have occurred.
And what are your main recommendations for dealing with the disease for our listeners?
Well I think it is important for anyone with endometriosis feels happy that they understand the condition and it has been fully explained to them. I think they have to recognise that it is a chronic and recurrent disease and take an approach to managing the disease in that way so they are using everything to stay in control of the disease and on top of it. I think if you are not trying to become pregnant and you have pain or very painful periods you should consider stopping your periods to try to protect yourself from getting endometriosis or more disease. I think you should look at your life style to ensure that you are doing all the things to keep yourself as healthy as possible and in control of the situation and long term to try and make sure that you have as few operations as possible because you have managed to keep in control of the disease.
Thanks very much for your time and your insights into the disease I hope that we have given endometriosis sufferers at least some hope and some practical insights into the disease. Whilst research into endometriosis was funded by Wellbeing of Women in 2000 it looked at underlying causes and improving surgical efficacy and new medical treatments. This year new Wellbeing of Women funded research is being carried out which we plan to speak about in future months, if you would like to read more about endometriosis please visit www.wellbeingofwomen.org.uk
With a range of symptoms, this condition is surrounded by many misconceptions.
Discover the truth behind the myths and understand more about endometriosis.
Heavy periods are a symptom of endometriosis.
Heavy periods are not a symptom of endometriosis. However they are certainly a factor which may contribute to the development of endometriosis and for this reason their management needs consideration.
I have pelvic pain so I must have endometriosis
There are many causes of pelvic pain. Endometriosis is one possible explanation but certainly cannot be assumed as the cause for this pain.
Endometriosis means you will be infertile
Endometriosis is associated with infertility in some women. However many women with endometriosis become pregnant. Having a diagnosis of endometriosis certainly does not mean that you should not use contraception if you do not want to be pregnant at that time.
Being exposed to too many dioxins will cause endometriosis.
There is much controversy surrounding the significance of dioxin in the aetiology of endometriosis but this has not yet been proven.
To find out about our research follow these links:
Page last updated January 2013