A hysterectomy is often said to be the only cure for endometriosis apart from the natural menopause. However, it does not always cure endometriosis, especially if the ovaries are not removed.

A hysterectomy in which the uterus and cervix are removed is known as a total abdominal hysterectomy (often abbreviated to a TAH). Sometimes all or part of an ovary and/or fallopian tube will be removed at the same time if they are diseased but at least part of one ovary is always left.

Following a total abdominal hysterectomy a woman will no longer menstruate but she will continue to ovulate until the time of her natural menopause.

A hysterectomy which involves the removal of the uterus and cervix as well as both fallopian tubes and ovaries is known as a total abdominal hysterectomy and bilateral salpingectomy and oophorectomy (often abbreviated to a TAH and BSO). It is also sometimes known as a radical hysterectomy.

Following a radical hysterectomy a woman will no longer menstruate or ovulate and she will undergo the menopause almost immediately.

To simplify matters and avoid confusion we will refer to a total abdominal hysterectomy as a total hysterectomy; and a total abdominal hysterectomy and bilateral salpingectomy and oophorectomy as a radical hysterectomy. We will use the term hysterectomy if we are referring collectively to both types.

Who is suitable for a hysterectomy

Hysterectomy is usually only used as a last resort to treat women whose endometriosis is so chronic and their symptoms so severe that their quality of life is intolerable. The most common reasons that women with endometriosis have a hysterectomy are the persistence of intractable and incapacitating pain or severe and persistent heavy bleeding. It should not be used, except in a few rare life threatening situations, until a range of other hormonal and surgical treatments have been tried without success.

Things to think about before a hysterectomy

The decision whether or not to have a hysterectomy involves two or three separate decisions. Firstly, you need to decide whether or not to have a hysterectomy. Secondly, you need to decide whether or not to have your ovaries removed. Thirdly, if your ovaries are removed, you need to decide whether or not to have hormone replacement therapy.

Hysterectomy or not

When a woman is faced with the decision of whether or not to have a hysterectomy she has almost invariably had a harrowing and traumatic fight with unrelenting endometriosis for many years. Her symptoms are usually so severe and persistent that they have taken over her life completely and there is no other way out. The decision to have a hysterectomy simply becomes a quality of life issue.

Nevertheless, most women have to hit rock bottom and cross that ‘invisible barrier’ of knowing emotionally that they have reached the end of their tether before they can make the decision to have a hysterectomy.

The decision to have a hysterectomy should be yours and yours alone. Do not allow anyone else — your gynaecologist, your partner, your mother or your best friend — to make the decision for you. You have to live with the decision, not them.

The decision must also be made at your pace. Do not let yourself be pressured into making a hasty decision just because your gynaecologist or someone else wants an answer by a certain date. Only you will know when you have finally reached the end of your tether so take as much time as you need. If you have to ask yourself whether or not you are ready for a hysterectomy then you aren’t.

Even though you must make the final decision it will usually be beneficial if you discuss your options with your gynaecologist, partner, family and friends, as well as other women who have been through the same operation. It is often worthwhile talking to a counsellor to help explore and resolve the issues.

Before you make a final decision get as much information as you need about the operation and its likely consequences. Do not hesitate to ask your gynaecologist any questions that you may have. If you have any doubts about the need for the operation get a second, or even a third, opinion.

Women who make the decision themselves and at their own pace usually recover more quickly and have less physical and emotional problems following their surgery.

Deciding to have a hysterectomy is a major and irreversible decision that will affect all aspects of your life. In making the decision you need to consider both the physical and emotional aspects.

You need to think about the degree to which your quality of life is compromised by your endometriosis and weigh that up against the likely advantages and disadvantages that the surgery will bring.

A hysterectomy will probably mean much less pain and disability. It will also mean that you cannot have children in the future so you will have to decide whether retaining your possible ability to have children is more important to you than relief from your symptoms and getting on with life. Your sexual response will probably change too — for better or worse — but you will not know how until after you have had the surgery.

You need to think about what effect not having all of your reproductive organs will have on your self-image. You may also need to consider the reactions of others after you have had a hysterectomy and what effect that will have on your relationships with them.

Ovaries removed or retained

The decision whether or not to have your ovaries removed is an extremely complex and difficult one because at the present time there are no clear answers regarding the pros and cons of removing or retaining the ovaries.

Some gynaecologists routinely remove the ovaries in women with endometriosis, others base their decision on the extent and severity of the woman’s disease and her age, while still others routinely retain them except under special circumstances.

It is extremely important that you find out what your gynaecologist intends to do and that you make your decision perfectly clear as to whether you want your ovaries removed or retained.

If you retain your ovaries you will not undergo a premature menopause but there will be a greater likelihood that your endometriosis will persist or recur. Unfortunately, it is not known how often endometriosis persists or recurs following a total hysterectomy: the few statistics in the medical journals range from around 10% to 85%.

Many gynaecologists believe that the ovaries should be retained in the majority of cases as they believe that the risk of recurrence is low and the risks of a premature menopause are considerable.

If your ovaries are removed you will undergo a premature menopause and have less likelihood of having a recurrence of endometriosis because it does not recur if you do not produce oestrogen. It is estimated that as few as 3% to 5% of women will have a recurrence if their ovaries are removed. The unusual cases where endometriosis recurs following a radical hysterectomy are usually due to the fact that a piece of an ovary was left behind because the gynaecologist either could not see it or could not remove it safely.

Surgical menopause — menopause due to the surgical removal of the ovaries — is usually more severe than the natural menopause because it occurs instantaneously in a younger woman whose hormone levels are higher. The drop in the hormone levels is both dramatic and sudden and many women will experience significant symptoms as a result.

Most women will experience the early symptoms of the menopause soon after their surgery — often within 24 to 48 hours. The most common early symptoms are hot flushes and night sweats. Some women will also experience tiredness and lethargy and sometimes depression, particularly if their hot flushes and night sweats stop them sleeping.

After a couple of months most women will start to experience some of the other effects of menopause. These include a dry vagina, which may cause painful intercourse, a change in sexual response, decreased libido and decreased breast size.

The main long-term effects associated with surgical menopause are a substantially increased likelihood of developing heart disease and osteoporosis later in life.

Hormone replacement therapy or not

The decision whether or not to have hormone replacement therapy if your ovaries are removed is difficult and complex because there is considerable controversy about the role of hormone replacement therapy following a radical hysterectomy for endometriosis.

Hormone replacement therapy is the administration of synthetic hormones to replace those which were previously produced by the ovaries in order to prevent or minimise the effects of menopause. It usually involves the use of both synthetic oestrogen and progesterone but sometimes only synthetic oestrogen is used.

The two main forms of administration are tablets and implants and there are a variety of strengths which can be used depending on the severity of your menopausal symptoms.

The most common side effects of hormone replacement therapy are nausea and sore breasts, although in the long-term it is possibly associated with a slightly increased risk of developing breast cancer. Hormone replacement therapy will prevent or reduce the effects of surgical menopause but it may also slightly increase the likelihood that you will have a persistence or recurrence of your endometriosis.

Hormone replacement therapy will prevent or reduce most of the symptoms of menopause, including hot flushes, night sweats and a dry vagina. More importantly it will significantly reduce the likelihood that you will develop heart disease or osteoporosis later in life.

There is a risk that the oestrogen component of hormone replacement therapy will lead to a persistence or recurrence of the implants remaining in your body. Many gynaecologists believe that because the concentrations of hormones used are much lower than those produced by the ovary the risk of recurrence is small — probably only about 3% to 5%.

Nevertheless, some gynaecologists recommend waiting a minimum of three to six months after a radical hysterectomy before starting hormone replacement therapy. This delay should allow any remaining endometrial implants to degenerate and waste away, reducing the chances that it will cause a persistence or recurrence of your endometriosis.

Some gynaecologists suggest that using only a synthetic progesterone such as Provera, rather than both oestrogen and progesterone, as an interim measure for the first few months after surgery will reduce the likelihood of recurrence while still providing some relief from the early symptoms of surgical menopause.

If you are unlucky enough to have/ a recurrence of your symptoms of endometriosis while on hormone replacement therapy it may be possible to treat the recurrence by stopping or adjusting the dosage. It may also be possible to treat it by having a course of one of the standard hormonal treatments such as Provera or Danazol.

If you do not take hormone replacement therapy you will have a reduced likelihood of having a persistence or recurrence of your endometriosis but you will probably experience the effects of surgical menopause and you will have an increased likelihood of developing heart disease and osteoporosis later in life.

A few women continue to produce enough oestrogen in their bodies to prevent or minimise the effects of surgical menopause. Many women will experience marked symptoms and, although they are often disruptive and unpleasant, some women find that they are easier to cope with than their endometriosis symptoms.

Some women have found that they have been able to prevent or minimise the symptoms of surgical menopause by having a good diet, particularly one high in foods which contain natural oestrogens such as grains, as well as vitamin and mineral supplements, regular vigorous exercise and regular sexual activity.

Risks and complications of hysterectomy

The risks and complications of a hysterectomy are the same as those outlined for a laparotomy.

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Day 1-5: menstruation (the menstrual period);

Day 3-13: the proliferative or follicular phase;

Day 14: ovulation;

Day 15-28: the luteal or secretory phase.

Although the first day of menstruation is usually referred to as the start of the menstrual cycle, the menstrual period (days 1-5) is actually the culmination of the hormonal changes which make up the menstrual cycle.

Menstruation (the menstrual period)-If the ovum is not fertilised the production of progesterone by the corpus luteum decreases. This causes the endometrium to break down and bleed. This bleeding is known as a menstrual period. The menstrual flow consists of endometrial cells, blood, secretions and possibly the unfertilised egg.

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Depo Provera is synthetic progesterone which is given by injection, usually in the buttock muscle. It is slowly absorbed over the next three months and ovulation is stopped. Its use has been controversial but in 1984 in the UK it was granted a license for long-term use and is slowly becoming more available. Most family-planning experts don’t see this as a first-choice contraceptive.

Advantages

•     A four-times-a-year injection renders the woman contraceptively safe.

•     It is suitable for poorly-motivated women and those of low intelligence who would find other methods difficult to remember.

Disadvantages

•     There are several side-effects including irregular and frequent bleeding, weight gain and delays in return to fertility.

Noristerat is a similar type of hormone that lasts for two months. It is used after a man’s vasectomy to tide the woman over the vulnerable time while she needs contraceptive cover.

Infra-uterine devices (IUD, coil, loop)

An IUD works by preventing the newly-fertilized egg from implanting in the uterus. There are several types and your doctor or clinic will advise you which is best for you. Plastic types can be left in indefinitely but copper-containing ones should be changed every 2-3 years. IUDs used to be suitable only for women who had had children but today versions are available even for those that have not.

Advantages

•     Once in place it can be forgotten, except for feeling inside each month after a period to ensure that the tail or string coming out of the cervix is still there. If you can’t feel it, see your doctor at once and use another method of contraception in the meantime.

•     It doesn’t interfere with love-making and you don’t have to buy replacements.

• IUDs have no bad effects on hormones or on the body generally. They do, however, have local side-effects-see below.

•     It can, if inserted in the first few days after unprotected intercourse, act as an abortion-producing agent. It is used in this way as a post-coital contraceptive.

Disadvantages

•     Subclinical pelvic infections can cause infertility in a proportion of women.

•     During insertion there is a danger of the device being pushed through the uterine wall into the abdominal cavity.

•     It can be expelled without the woman knowing it.

•     The long-term effects of many years of irritation to the lining of the uterus are not known.

•     Tubal (ectopic) pregnancies are more common in IUD users. The IUD should be removed immediately a pregnancy is confirmed.

•     Heavy periods and ’spotting’ are not uncommon.

•     Some men complain of feeling the tail or string during intercourse.

•     It has to be put in by an expert in the first place and there can be quite a lot of pain for a few hours after its insertion.

•     You have to go back 2-4 weeks after insertion to see your doctor.

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