The inside lining of the uterus (womb) is called the endometrium. Each month, the endometrium is stimulated by oestrogen to grow in preparation for implantation of an embryo (fertilised egg). If pregnancy does not occur, the endometrium is shed during menstruation. Endometriosis is a condition where endometrial cells are found in sites outside the uterus. It occurs in women having periods, from teenagers up to the menopause.

Endometriosis is most often found in the pelvis, especially on the utero-sacral ligaments (ligaments that support the uterus), the Pouch of Douglas (space between the uterus and rectum) and other areas covered by the peritoneum (the thin membrane that lines the abdominal and pelvic cavities). It can be superficial, i.e. on the surface of tissues, or grow deeply into the tissues. Endometriosis in the ovaries can form blood filled cysts often called “chocolate cysts” or endometriomas. Less frequently it can affect the bowel, the bladder, develop between the vagina and the bowel and very rarely it can occur in the lungs or in more distant sites.

Symptoms

Women with endometriosis can experience a variety of different symptoms. Some have none or very mild symptoms whilst others can suffer more severe effects. The commonest symptom is pain. Characteristically pain has a cyclical pattern, worse around the time of a period and/or ovulation (egg release), even if the pain is present continuously.

The symptoms that women may experience are:
 

• Painful periods (dysmenorrhoea) – the pain characteristically may start before the period (menstruation) and then worsen during it, but sometimes the onset of menstruation can also ease the pain. Less commonly the pain will continue after bleeding has stopped.  
• Pain during or after sexual intercourse (dyspareunia).  
• Difficulty in getting pregnant or infertility- endometriosis can have an effect on fertility, but it is important to note this will not be the case with all women and many do go on to get pregnant. Where it is an issue there are treatments that can help.  
• Chronic lower abdominal pain.  
• Bowel symptoms - pain or bleeding during defecation (opening bowels), bloating, abdominal cramps and spasms.  
• Urinary symptoms - blood in the urine and discomfort with a full bladder and increased frequency of urination.  
• Fatigue.  
• Chest pain or coughing blood, although this is very rare.

Diagnosis

It can be difficult to diagnose endometriosis. Each woman may have very different symptoms and often they overlap with those caused by several other conditions.

If you are having symptoms see your GP, it can be useful to keep a diary of any symptoms or pain you experience.

Having been assessed by the GP, if the symptoms are mild and there are no other concerns it maybe possible to manage with pain relief alone. If endometriosis is suspected and symptoms are not manageable then a referral to a gynaecologist (specialist) will be made.

The gynaecologist will review symptoms, take a medical history and carry out an internal examination; however, this will only give an indication of the possibility of the condition and cannot confirm it.

An internal ultrasound scan can be useful in diagnosis. This is carried out by inserting an ultrasound probe inside the vagina (trans-vaginal method). It is useful in detecting ‘chocolate cysts’ (endometriomas) but cannot diagnose small deposits of endometriosis. In more severe and complex cases of endometriosis the specialist may also request an MRI scan but this is not used routinely.

In order to definitively diagnose endometriosis an operation called a diagnostic laparoscopy is performed. The gynaecologist uses a small camera to look into the abdomen through a small incision in the umbilicus. This procedure is normally performed under general anaesthetic and it is often possible to return home the same day. Endometriosis can be treated during this procedure by destroying or removing the endometriotic lesions (patches). In some women despite pain and suspected endometriosis, there may be no evidence of the condition during diagnostic laparoscopy.

Causes and risk factors

The exact cause remains unknown. However, during a period, endometrial cells from the uterus flow backwards along the fallopian tubes (‘retrograde menstruation’) and may seed in the pelvic cavity. These cells can implant in the pelvis and each month will respond to oestrogen similarly to endometrium in the uterus. This can result in bleeding which can cause patches of scarring that can create pain and adhesions (scarring that sticks to other organs or parts of the body). There are several theories about what exactly causes endometriosis and further research is needed to ascertain the exact mechanisms of the condition.

It is now recognised that anything increasing the amount of menstrual blood entering the peritoneal cavity increases the risk of endometriosis occurring e.g:

• Heavy periods
• Long periods
• Short cycles and hence more frequent periods

It is also recognised that there is a genetic predisposition to developing endometriosis as first degree relatives of a sufferer have a 7 times higher chance of developing the condition.

Further, factors which reduce the amount of menstrual flow entering the peritoneal cavity reduce the risk e.g:
 

• Pregnancies
• Prolonged breast feeding
• Contraceptive agents that stop periods

Treatment

Medical treatments may combine pain relief with a hormonal treatment to control the symptoms of the endometriosis. However, the aim of medical treatment should be to suppress the growth of endometrium and hence endometriosis i.e. to stop periods. This can have the effect of improving quality of life, suppressing the endometriosis and protecting fertility. This treatment will not change the chance of conceiving and is a treatment for symptoms not for fertility problems. Hormonal treatments stop the natural menstrual cycle and may affect ovulation and so are not appropriate for women who wish to become pregnant.

It may be necessary to undergo surgery if medical treatments are unsuccessful or if the endometriosis is affecting fertility. Not everyone needs surgery, either for diagnosis or treatment of the condition. Current options include:

Medical treatments
 

• The Combined Oral Contraceptive pill (COC). It is important that the preparation chosen can be taken back to back, i.e. continuously, without a 7 day break. This medication contains oestrogen and progestogen which prevents ovulation and prevents growth of the endometrium so that “shedding” is unnecessary. Before prescribing hormonal treatment, the GP or specialist will check first for any contraindications (for example raised blood pressure, previous deep vein thrombosis, smoking in over 35 year old women).

• Progestogens prevent growth of the endometrium and should therefore, stop periods or give very light periods. Many women find after a few months their periods will stop. There may be irregular bleeding for the first few months until it is effective. Higher dose progesterone treatments can be used but may have more side effects.

• The Intra-uterine system (coil) is a small device which is placed inside the uterus. The stem of the coil is loaded with progesterone which is slowly released locally to the uterus and surrounding area. Each device is effective for 5 years and because of the local release only a small amount of the hormone enters the general circulation. After the first few months many women find that their periods stop or become lighter and less painful. It has been shown to be effective in the treatment of endometriosis.

• GnRH agonists can be used to induce a temporary menopausal state. This results in very low levels of oestrogen so the endometriotic deposits regress and pain improves. They are given by monthly or 3 monthly injection but can have side effects including hot flushes, night sweats, vaginal dryness and loss of bone density. In order to avoid these side effects, “add back” HRT (Hormone replacement therapy) can be given simultaneously.

Surgical treatments

If surgery is needed, there are different options depending on the severity of the condition.

• Laparoscopic surgery (operating through a small keyhole incision using a laparoscope) offers a quicker recovery than open surgery and may be used to see if endometriosis is present. There are different techniques available to remove or destroy the endometriosis which will be decided by the surgeon. 

- Diagnostic laparoscopy is usually a one-day procedure, which aims to diagnose the condition but it may also be possible to remove or destroy small endometriotic deposits if they are discovered. It can also be used to treat endometriomas of the ovary. This type of surgery can improve symptoms for some women even if only minor treatment is performed.

-Extensive Laparoscopic surgery may take longer and require an inpatient stay if more extensive disease is present. This will require careful discussion and planning with the endometriosis specialist as there are risks to the surgery both at the time of the operation and more long term.

• Laparotomy is open surgery through a bigger incision (usually in the bikini line) and is sometimes needed if the condition is severe and extensive.

Endometriosis is a recurrent condition. Unless a woman is ready to conceive (get pregnant), there is now evidence to support stopping periods to delay/prevent recurrence of the condition using continuous contraceptive hormonal agents (see expert interview).
 

• Hysterectomy (removal of the uterus), together with removal of the ovaries and fallopian tubes (salpingo-oophorectomy) is now considered only as a last resort. This will only usually be discussed if all other treatments have failed. Considerations such as age, the severity of symptoms and fertility will be taken into account. It is essential if seeking a “cure” that the ovaries are removed otherwise oestrogen produced from ovaries can stimulate any remaining endometriosis cells left behind. In women who are not menopausal at the time of this surgery, hormone replacement therapy (HRT) may be given to help treat the resulting menopause symptoms.

• Adaptation of lifestyle, in addition to the treatments above, some adjustment in lifestyle may also help in 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. Eating a healthy diet, taking regular exercise and managing fluid intake can help (see expert interview for more information). A few women have reported finding complementary medicine useful.

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.

Karen's story-

"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

Endometriosis and managing the condition: Text Version

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:
 

• Study of the importance of stem cells from the human womb lining in establishing endometriosis to formulate/propose new treatments

• The Royal College of Obstetricians and Gynaecologists website has a wide range of information and guidelines on many women’s health topics. This can be found at: http://www.rcog.org.uk/womens-health/patient-information 

• NHS Choices website also has a range of health information. This can be found at: http://www.nhs.uk/Pages/HomePage.aspx