|The Endometriosis Association of Ireland FAQ (Frequently Asked Questions)
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|· What is Endometriosis?|
Endometriosis occurs when endometrium (the tissue which normally lines the uterus) is found outside the uterus in other places or attached to other organs.[ Back to Top ]
This tissue responds to hormones in the same way as normal endometrium, and so it bleeds each month at period time. Because this bleeding is occurring in an abnormal location, (with nowhere to go) it can cause scarring and tissue damage.
If it occurs on the ovaries, it can cause cysts of endometriosis, or “chocolate cysts”, so called because they contain old blood, which is very dark in colour. All of these events can lead to pain and/or infertility which may require treatment.
The most common place for endometriosis to occur is within the pelvis (on the ovaries, bladder, bowel or behind the uterus), but it can also be found in other areas of the body, causing pain during menstruation. Because endometriosis is hormonally dependant, it often tends to resolve or go away spontaneously, after the menopause occurs.
|· How would I know if I had endometriosis?|
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 at their 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 symptom
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.
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.
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|· What causes Endometriosis?|
Despite intensive research worldwide, it is not known why some women develop endometriosis and other do not.
The most widely accepted theory is that 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 out side the uterus.
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|· 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. [ Back to Top ]
It may be useful to bring up the question of endometriosis 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 minor surgical procedure 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. [ Back to Top ]
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 (stage I, II, III or IV). Some mild types of endometriosis may come and go over the years, and may never cause any significant problems. In more severe problems, the disease can behave in a more aggressive manner, and may spread to surrounding tissues, causing significant pain and infertility.
Although endometriosis is not a malignant condition, it can cause both physical and emotional suffering.
Unfortunately it is not possible at the time of laparoscopy 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.
|· 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.
Surgical treatment 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, the 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 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 a 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.
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 (shown below), have anti-oestrogen effects ~ GnRH analogues because they introduce a temporary, reversible, menopause state ~ Danazol and the progestogens because they are “male” type hormones. Unfortunately, all drugs have possible side effects, but many are mild and the commoner associated with these particular drugs are listed on the table below.
There is a great variation in the kind of side effects experienced by different women, so if a drug 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. More research is needed in this area.
IT IS ALWAYS ADVISABLE TO AVOID PREGNANCY WHILE ON TREATMENT, BECAUSE OF THE POSSIBLE ADVERSE EFFECTS ON THE FOETUS. WHILE SOME OF THESE DRUGS ARE ACTUALLY CONTRACEPTIVES IN THEMSELVES, WITH OTHERS IT IS NECESSARY TO USE BARRIER METHODS OF CONTRACEPTION. YOU SHOULD DISCUSS THIS WITH YOUR DOCTOR.
DRUG ROUTE POSSIBLE SIDE EFFECTS (All reversible when treatment ends, except those marked with*)
- GnRH ANALOGUES (Decapeptyl, Zoladex, Prostap)(Decapeptyl, Zoladex)(Synarel, Suprefact) Monthly injection3 monthly injectionNasal spray Hot flushes, headaches, dry vagina, mood swings, insomnia, decrease in breast size. Irregular light bleeding during first and possibly second 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) Tableor injection: Weight gain, mood changes, acne, fluid retention, bloating, breakthrough bleeding.
- Oral contraceptive pill Tablet (Cyclicalorcontinuous): Breakthrough bleeding, weight gain, mood swings, headaches.
Emotional / Social Support Endometriosis, whether it causes pain or infertility, can have a significant effect on a woman’s personal life, as well as her 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 you 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.
Unfortunately, in many cases the disease will reoccur when the treatment ceases. The aim of these drug treatments is to stop the endometriosis from progressing, none cure the disease.
Some women benefit from complimentary approaches, including acupuncture and reflexology. While there is no scientific data in the “western medical” literature they can be of immense help, particularly for women who have tried unsuccessfully with conventional treatments.
Endometriosis can reoccur, and the medical and surgical treatments currently available are not suitable for long term therapy. With this in mind the holistic approach of complimentary medicine may help you to develop a more positive approach to controlling your disease.
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