Endometriosis: Do I have it and if I do what are my options?

To mark Endometriosis Awareness Month, Dr David Glenn answers common questions about the gynaecological condition that can cause severe pain and lead to fertility problems, a hysterectomy and the removal of parts of the bowel or bladder.

He also explains that because it is misdiagnosed so frequently the health service in Northern Ireland is currently reorganising to focus the treatment of severe endometriosis to a small number of specialist units.

What are the common symptoms?

Endometriosis is when the tissue that normally lines the womb is found to grow outside the womb and is present in up to one quarter of women presenting with gynaecological symptoms.  

There is a lot of variation in the specific symptoms which women complain of and indeed there is poor correlation between the symptoms and surgical findings.  

Pain is a common feature which is often worse coming up to a period.  

It is usually chronic, severe and exacerbated by sexual intercourse or even just going to the toilet.

Can it cause infertility? Can it be fatal? 

With regard to infertility, the chances of conception can be half that of the normal population.  

There are multiple reasons for this, including, reduced frequency of intercourse, interference with sperm function inside the genital tract, blockage of tubes or just interference with tubal function and even early pregnancy failure (miscarriage).

It is not usually a fatal condition but can cause extremely severe symptoms in the women who suffer it and can affect women, physically, emotionally, socially and psychologically.

What kinds of woman are typically affected?

Four per cent of women with no symptoms have endometriosis. The incidence is slightly higher in oriental women and slightly lower in black women.  

Being tall and thin may increase your risk a little.  

The disease occurs more often in women with painful periods, early age of onset of periods and in those with shorter cycles.  Those with higher caffeine and alcohol intakes may be more prone to the condition and family history seems to increase the risk.

What causes it? 

Many theories exist to try and explain why this disease occurs but none are yet conclusive.  

The oldest theory is one of retrograde menstruation where the menstrual tissue passes back up the fallopian tubes and implants within the pelvis.  

Other theories include it being caused by environmental toxins and there are even theories where cells change from one type into endometriosis within the abdomen or pelvis.

If you think you have endometriosis what should you do? 

This is a condition which is often misdiagnosed or missed.

Anyone with symptoms of pelvic pain, particularly coming up to a period, or painful periods, painful intercourse or even pain going to the toilet should discuss their symptoms with their GP who can organise a referral to a gynaecologist.

How is it diagnosed?

It is diagnosed by a combination of history, examination, ultrasound scan +/- MRI scan.  

The gold standard investigation is laparoscopy, a key-hole procedure where a tiny camera is passed via the umbilicus.  

This procedure allows the surgeon to not only diagnose the condition and the extent of it but also allows treatment.  

This may involve ablating the tissue, excising the tissue and reconstructing the normal pelvic anatomy.  More severe cases may require hysterectomy. 

What surgical and non-surgical treatments are available in Northern Ireland?

As well as the laparoscopy (see above), there are numerous medical treatments.

These include numerous options for pain relief and also suppression of the menstrual cycles.  This may take the form of contraceptive pills or progesterone tablets or even a progesterone contains intra-uterine contraceptive device (“Coil”).

What is involved in surgery?

As described above, the aims of surgery are first to confirm the diagnosis and to map out the extent of the disease.  

Surgery also provides the opportunity to treat the disease by excising it and or ablating it.  This sometimes requires hysterectomy and can even sometimes require us to remove a portion of bowel or bladder. 

 Are there any treatments available elsewhere that are not available in Northern Ireland? 

All current mainstream treatment modalities are available in Northern Ireland.  

We are currently in the midst of reorganising services within Northern Ireland in order to try and focus treatment of severe endometriosis to a small number of units (most likely one per trust) with teams focused on providing the multidisciplinary approach needed to adequately treat this condition.

What can patients expect with their recovery?

The benefits of key-hole surgery are immense with patients often able to go home the same day or just with one night stay.  

Unfortunately the disease can and often does recur, underlining the necessity for hospitals to have multidisciplinary teams in place to look after the multiple needs of these patients.

Can it be cured?

It often cannot be completely cured.  

However, often the more major surgical procedures such as hysterectomy provide long term relief of symptoms.  

Some women experience considerably fewer symptoms after childbirth and for many their symptoms disappear completely after the menopause.

What should endometriosis patients look for in a consultant? 

A Consultant Gynaecologist can provide an assessment of a patient’s condition and if it is advanced they will usually refer the patient to the team within their trust who have the appropriate skills to deal with advanced stage disease.  

All the trusts in Northern Ireland have Consultant Gynaecologists and other multi-professional team members who are able to deal with severe endometriosis.

David Glenn is a consultant Obstetrician and Gynaecologist based in the Ulster Hospital and the Clinical Director, South Eastern Trust, Belfast. 


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