Fig 1

HOW WOULD I KNOW IF I HAD ENDOMETRIOSIS? 
Symptoms 

One of the problems with endometriosis is that it can cause a wide variety of symptoms.  This can lead to confusion with other conditions (i.e. pelvic infection, or irritable bowel syndrome), which in turn can make it difficult to diagnose. 

Because the pain associated with this condition is caused by the endometrial tissue bleeding internally at the time of menstruation, the symptoms are usually worst during a period.  Symptoms of endometriosis can include any of the following: 

- Painful periods (which persist even when on the PILL). 
- Pain at ovulation time (mid-cycle). 
- Deep pain during and after intercourse 
- Painful bowel motions (particularly at period time). 
- Rectal (bowel) bleeding at period time. 
- Constipation or diarrhoea at period time. 
- Painful urination (particularly at period time) 

Many women also complain of general tiredness, and pre-menstrual type symptoms. 

* REMEMBER:  MANY OF THESE SYMPTOMS CAN OCCUR FOR OTHER REASONS, AND DO NOT NECESSARILY MEAN THAT YOU HAVE ENDOMETRIOSIS ~ ESPECIALLY IF IT IS JUST ONE SYMPTOM IN ISOLATION.  CONSULT YOUR DOCTOR IF YOU ARE CONCERNED. 
 

INFERTILITY 
In women with fertility problems, endometriosis is found in approximately one third.  Certainly, severe endometriosis can lead to blocked fallopian tubes and ovarian cysts, both of which in turn can lead to infertility.  However, while mild degrees of endometriosis are found in many women who have difficulty becoming pregnant, it has not yet been proven whether the endometriosis is actually the cause or not.  There is currently a view that very mild forms of endometriosis may in fact be “normal” for some women. 
 

WHAT CAUSES ENDOMETRIOSIS? 
Despite extensive research world-wide, it is not known why some women develop endometriosis and others do not.  The most widely accepted theory is that small bits of the lining of the uterus pass into the pelvis during menstruation.  However, while this  occurs in all women, it is not really known why it causes endometriosis in only some.  Another theory is that women with endometriosis may have an abnormality of the immune system, or genetic factors which make them susceptible to the condition; and still another possibility is that there may be an abnormality in the endometrium itself, which makes it more aggressive, and therefore more likely to implant outside the uterus. 
 
 
WHAT SHOULD I DO IF I THINK I HAVE ENDOMETRIOSIS? 
If you feel you have symptoms suggestive of endometriosis, you should discuss them with your family doctor or GP.  She or he will then  refer you to a gynaecologist for assessment.  It may be useful to bring up the question of endometriosis yourself with your doctor, particularly if other members of your family have endometriosis. 

At present, the only way to have endometriosis diagnosed is by having a test called a laparoscopy.  This is performed under general anaesthetic, and involves a laparoscope (telescope type instrument) being passed into the pelvic cavity, via the umbilicus.  In this way, the pelvis ~ including the uterus, fallopian tubes and ovaries ~ can be visualised.  Endometriosis can be seen as red, blue, black, yellow or white areas on the surface of these organs, or sometimes as scar tissue, or ovarian “chocolate” cysts. 
 

WHAT DOES IT MEAN FOR ME IF I HAVE ENDOMETRIOSIS? 
A lot of women may have endometriosis and never know about it because it doesn’t cause any problems.  Sometimes this type of endometriosis is diagnosed incidentally (during an operation or investigation for something else), and does not require any treatment. 

Based on the amount and location of endometriosis seen during a laparoscopy, it is graded as minimal, mild, moderate or severe (or as stage 1, 11, 111 or 1V).  Some mild types of endometriosis may come and go over the years, and may never cause any significant problems.  In more severe forms, the disease can behave in a more aggressive manner, and may spread to surrounding tissues, causing significant pain and infertility.  IT IS NOT HOWEVER, A MALIGNANT CONDITION.  Unfortunately it is not possible at the time of laparoscopy to predict which will progress and which will not.  In approximately one third of women it will improve without any treatment, in about a third there will be no change and in another third the disease may worsen. 

                                       Fig2                                                                      Fig3

WHAT TREATMENTS ARE AVAILABLE? 
The treatment of endometriosis can be complex, and will obviously depend on your symptoms.  It may depend on your age, and whether or not you have pain, or infertility, or both.  The treatment used may generally be divided into four categories: medical, surgical, emotional/social and complementary, and many women may require a combination of approaches. 
 

MEDICAL TREATMENT 
The aim of medical treatment is to suppress the hormonal stimulation of the endometriosis, allowing the pelvis to rest and heal.  This usually involves stopping menstruation.  Treatment is initially for 3-6 months, and 80-90% of women notice a dramatic improvement in symptoms.  The commonly used drugs (which are shown in the table opposite), have anti-oestrogen effects ~ GnRH analogues because they induce a temporary, reversible, menopause state, and Danazol and the progestogens because they are “male” type hormones.  Unfortunately, all drugs have possible side effects, but many are mild, and the commoner ones associated with these particular drugs are listed on the table.  There is a great variation in the kind of side effects experienced by different women, so if one doesn’t suit you, another one might.  All of the drugs seem to be equally effective in controlling symptoms, though not a lot of research has been done on the oral contraceptive pill.  GnRH analogues and Danazol are usually only used for a period of 6 months, because of the possible effects of prolonged low oestrogen levels.  Recently however, hormone replacement therapy (HRT) in low doses, has been used in combination with the GnRH analogues, and this offers hope that it may be possible to use them for longer periods of time, but more research is needed in this area.  

* IT IS ALWAYS ADVISABLE TO AVOID PREGNANCY WHILE ON TREATMENT, BECAUSE OF POSSIBLE ADVERSE EFFECTS ON THE FOETUS.  WHILE SOME OF THESE DRUGS ARE ACTUALLY CONTRACEPTIVE IN THEMSELVES, WITH OTHERS IT IS NECESSARY TO USE BARRIER METHODS OF CONTRACEPTION.  YOU SHOUD DISCUSS THIS WITH YOUR DOCTOR. 
 

SURGICAL TREATMENT 
Surgical treatment of endometriosis involves removal of the endometriotic deposits, or burning them off with a laser or diathermy (electrical current).  Surgical treatment is probably superior to medical treatment for endometriosis that is deeply implanted, for endometriotic cysts, or where there is a lot of scar tissue ~ particularly if this is causing infertility.  This surgery can sometimes be done at the time of the laparoscopy, i.e. “keyhole surgery”.  Alternatively, some women with severe symptoms, who have already had a family, or who do not wish to conceive, may opt for hysterectomy (removal of the uterus). 
 

INFERTILITY TREATMENTS 
Surgery can be effective for endometriosis where damage or scarring in the fallopian tubes or ovaries is causing infertility.  However, if this fails, or if the damage is inoperable, the next alternative may be IVF (In Vitro Fertilisation or test-tube babies).  For women with mild endometriosis, and where the tubes are not blocked, there is some controversy as to the best form of treatment.  Many women will conceive spontaneously without any treatment.  Otherwise fertility drugs, and eventually IVF, may be effective. 
 

DRUGS USED TO TREAT ENDOMETRIOSIS:  ROUTE OF ADMINISTRATION AND POSSIBLE SIDE EFFECTS 

DRUG	ROUTE	POSSIBLE SIDE EFFECTS      (All reversible when treatment ends,         except those  marked with *)
GnRH ANALOGUES  (Decapeptyl SR,   Zoladex, Prostap)  (Decapeptyl 3 month, Zoladex) (Synarel, Suprafact)	Monthly Injection  3-monthly Injection Nasal Spray	Hot flushes, headaches, dry vagina, mood swings, insomnia, decrease in   breast size.  Irregular, light bleeding  during 1st and possibly 2nd month of  treatment.
Danazol	Tablet	Hot flushes, acne, oily hair/skin,  weight gain, nausea, muscle cramps,  mood swings, breakthrough bleeding.  *abnormal hair growth  (less than 5%)  *deepening of the voice  (less than 5%),
Progestogens  (Provera, Duphaston)	Tablet    or  Injection	Weight gain, mood changes, acne,  fluid retention, bloating,  breakthrough bleeding.
Oral Contraceptive Pill	Tablet   (cyclical or continuous)	Breakthrough bleeding, weight gain, mood swings, headaches.

 
 

EMOTIONAL / SOCIAL SUPPORT  
Endometriosis, whether it causes pain or infertility, can have a significant effect on a women’s personal, work and social life.  The uncertainty associated with the condition, both in terms of likelihood of progression to more severe disease and the possible effects on fertility, understandably cause anxiety and stress.  Emotional and psychological support is therefore vital for sufferers, and sometimes for their partners.  Most women appreciate the opportunity to be involved in decision making about their own care, so you should talk to your doctor and ask questions.  Sometimes it can take years to have endometriosis diagnosed, and because of the many different symptoms, it can mean that more than one type of treatment is needed.  All of this means that it can be as frustrating for your doctor as it is for you.  Therefore, it is important to have a good relationship with your doctor so you can easily discuss your symptoms and concerns, as well as the various treatment options. 

Support groups such as the Endometriosis Association of Ireland can be of immense benefit ~ their address and phone number is at the bottom of this page. 
 

COMPLEMENTARY THERAPY 
Some women benefit from complementary approaches, including acupuncture and reflexology.  While there is no scientific data in the “western medical” literature to support these treatments, they can be of immense help, particularly for women who have tried unsuccessfully with conventional treatments. 

Endometriosis can  re-occur, and the medical and surgical treatments currently available are not always suitable for long term therapy.  With this in mind the holistic approach of complementary medicine may help you to develop a more positive approach to controlling your disease. 
 

THE ENDOMETRIOSIS ASSOCIATION OF IRELAND 
Is a support group for sufferers of endometriosis.  They hold regular meetings, offer telephone advice, information leaflets and a newsletter.  They also promote research and awareness among members of the medical profession. 
They can be contacted at: 
CARMICHAEL HOUSE 
NORTH BRUNSWICK STREET 
DUBLIN 7 
TEL:  01 8735702