FEELINGS AND EMOTIONS IN CASE OF ENDOMETRIOSIS: FRUSTRATION

Before you were diagnosed many questions no doubt regularly crossed your mind, including:

Am I neurotic

Are these symptoms all in my head

Is there anything really wrong with me

Do I have a low pain threshold

Why am I unable to cope with period pain when my friends have no trouble

Why do I have to spend so much time laid up in bed suffering

Will I have to suffer and tolerate this period pain until I reach menopause.

These questions probably bring a wry smile now, but when we consider the difficulty many women with endometriosis had in getting a doctor to acknowledge that something was really wrong, it can be seen that pre-diagnosis is an extremely difficult and emotional time.

Those suffering dyspareunia often ask what causes them to have pain during intercourse. Those who are infertile cannot understand why they cannot get pregnant.

Some women have also thought the pain of endometriosis was in fact a life-threatening disease such as cancer and have lived in fear for months until a correct diagnosis is made.

It is common to feel frustrated with your partner, family and friends before endometriosis has been diagnosed because you are unable to tell them what is wrong with you, why you are in so much pain, why you are feeling tired and depressed.

Some women are in pain for just a few days each month and look perfectly well for the rest of the time, and it can be difficult for those close to you to accept that there is something wrong. They may not take your pain seriously or may misinterpret your inability to take part in social gatherings and leisure activities, labelling you as lazy or trying to opt out. Sometimes your pain may have been interpreted as a quest to get sympathy and attention. Some may have accused you of being lazy because your pain has rendered you tired and incapable of doing your usual daily chores.

Students have found that they have been accused of trying to get out of school work, study or exams. Few of us have been lucky enough to escape those days when the pain has disrupted time at work, school or home. Unfortunately, teachers, employers and partners may not be sympathetic to your illness and you feel frustrated and isolated.

There are also times when doctors have frustrated us because they have refused to take our symptoms seriously by saying: ‘It’s a woman’s lot’ or ‘You’ll just have to learn to live with the pain’ or ‘It will get better once you have a baby\ Then there is always: ‘You won’t have any more period pain once you reach menopause’. Not reassuring news!

None of these quotes will be of any comfort to those wanting an answer to a problem that could well plague them for their reproductive years.

Partners too can be frustrating at times. Even those who are understanding and have the best of intentions can drop the odd stinging remark here and there. Some ask if you really love them because you have refused intercourse — yet again — because you are simply in too much pain. Or perhaps you are not in pain and would like to keep it that way for at least one night!

For those women who already have children, endometriosis can put a strain on their relationship. No child likes to see its mother unwell and in pain. For younger children it is difficult to understand why mummy is grumpy and moody; for the older ones it can be annoying when mum is out of action and not available to tend to their needs.

It is important that you continue to seek a correct diagnosis. You know your own body, and you are the best person to recognise if there is something wrong. Do not be fobbed off. Try not to be discouraged. Keep searching and exploring until you have an answer.

And if that means that you have to insist on investigations and tests to reveal the problem, insist!

You must remember that severe period pain, painful intercourse, backache and heavy bleeding are not normal. You do not have to put up with it.

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