“My doctor feels I have endometriosis, but he wants to do surgery to confirm it. I’m worried that if I have surgery, the disease will only get worse. I have heard that endometriosis acts just like cancer. If you cut into it, the disease can spread because (1) some cells can get free from the tumor and infect other organs and (2) the cells arc stimulated Co grow from the oxygen in the air. Is there a way to confirm my endometriosis without the risk of making it worse?”

Marilyn’s questions touch on two important issues involved in understanding and treating endometriosis. The first is the reason tor surgical diagnosis, and the second involves the confusion between the pathology of cancer as one type of disease and endometriosis as another.

A woman’s medical history in combination with her doctor’s clinical findings might clearly indicate endometriosis, thereby making surgical diagnosis unnecessary. But this cannot always be the case. If a doctor is unsure of the diagnosis (especially when endometriosis is at an early stage of growth and docs not yet produce large masses), or if he is unable to determine the nature of the tumor he feels while giving his patient an internal examination, he will want to do a laparoscope Although this is minor surgery (it will be discussed and illustrated in the next chapter), it is for Marilyn and women like her, still an operation wherein something might go amiss.

There has been some documentation of endometriosis spreading as a result of laparoscope but this is rare and is most likely to occur when there is a history of repeated laparoscopics. In these cases, the endometriosis grows internally around the area of incision and implants itself in the scar, and a second or third incision in the same scar could free some cells. In a few cases, women who underwent surgery for hernias were later found to have endometriosis in the scar tissue.

If Marilyn’s doctor feels that laparoscopy is called for, and there is no emergency, he might prescribe the medication Danocrine renders endometriotic cells inactive. Taking Danocrine for a two-month period preceding laparoscopy should be sufficient to halt the growth of Marilyn’s endometriosis, as well as lay to rest her Sears about contamination during the procedure.

Cancer and endometriosis do not have much in common, other than their methods of invasion in the body. Cells of either type may use similar channels to reach internal organs such as the lymph system or the blood, or, after implanting themselves, cells may metastasize, or grow into a cyst or tumor. Endometrial cancer and endometriosis are not the same disease, although it has been found that childless women tend to be vulnerable Co both conditions and that a great percentage of women with endometrial cancer suffer from menstrual irregularities.

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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.

*103\83\2*

Researchers found although it was present in extremely high levels in some women with ovarian cancer, raised levels were also found in some women with a range of gynaecological conditions, including endometriosis, adenomyosis, pelvic inflammatory disease, unexplained infertility and during pregnancy and menstruation. In an attempt to find a reliable blood test for endometriosis researchers have been investigating the levels of CA-125 in women with endometriosis. They have found that the levels in women with minimal and mild endometriosis are no different to those found in women in general but the levels in women with moderate and severe endometriosis are generally significantly higher.

Unfortunately, the CA-12 5 test is not yet sufficiently accurate to replace laparoscopy as a general test for the diagnosis of endometriosis because the levels are not raised in all women with endometriosis and because the levels are raised in a range of conditions other than endometriosis.

It may soon be useful as an aid for the diagnosis of endometriosis and could be used to help decide who needs a laparoscopy For example, if the gynaecologist only vaguely suspects that a woman has endometriosis he may decide to perform a laparoscopy if the CA-125 levels are raised, but not if the levels are normal.

For now, the most useful role of the CA-125 test appears to be in monitoring the progress of the disease after a definite diagnosis has been made. The levels of CA-125 appear to rise as the disease worsens and fall as the disease improves. Therefore, it may be possible to use repeated CA-125 tests to help determine the real effectiveness of drug treatment or to determine whether or not the underlying disease has worsened, improved or recurred, thereby avoiding the need for repeat laparoscopies.

The CA-125 test offers the most promise as a diagnostic test for endometriosis but further work is necessary before it will be accurate and reliable enough to be used by gynaecologists for the diagnosis and monitoring of endometriosis.

*44\83\2*

This link was recognized by Dr Katharine Dalton, a pioneer in the treatment of pre-menstrual syndrome (PMS), who discovered that her patients’ PMS symptoms were relieved by eating regularly. The ‘little and often’ approach to eating prevents the blood sugar levels from dropping excessively and stops adrenalin from being released. What Dr Dalton discovered was that this adrenalin blocked the utilization (or uptake) of progesterone in the second half of the menstrual cycle. This problem, ultimately due to poor eating habits, was causing the symptoms of PMS. The answer was to stabilize blood sugar levels by getting patients to eat properly and stop the adrenaline interfering with the progesterone.

Interestingly, when women with PMS are tested, their blood hormone levels, including progesterone, are no different from those of women without PMS. The difference is not that PMS sufferers have low progesterone levels but that, because of their low blood sugar levels (hypoglycemia), their bodies cannot use the progesterone they have.

This discovery has huge implications for fertility and miscarriage problems. If progesterone is blocked in this way it reduces the chances of maintaining a pregnancy, since, this hormone is needed to maintain the womb lining at the very start of a pregnancy. Many women who think they are infertile may therefore actually get pregnant without knowing but lose the embryo early on because their bodies cannot use the progesterone they have. In such cases they may believe they are just having a normal period.

There is also a clear and well-established link between blood sugar balance problems such as diabetes, poor eating habits and excess weight. If you are not eating properly your blood sugar levels can zoom up and down chaotically. Not only can this have the hormonal effect observed by Dr Dalton but it may also spark off the sugar cravings, food obsessions and bingeing habits that make us eat even more of the wrong food and put on even more weight. So it is a vicious circle.

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