• Symptoms include very heavy bleeding and severe cramps
• Is aggravated by the cyclical pattern, so the key is to stop the menstrual cycle
• Occurs mostly in women over 35, many who have undergone uterine surgery, e.g. fibroid removal or Caesarian
• There is no known cause
• The condition worsens with age, but tends to right itself after menopause
One in ten women suffer unbearably painful periods, have to miss work, cancel holidays and even become housebound for several days every month. The cause of this could be adenomyosis, a condition of the uterus that most women have never heard of.
With adenomyosis, the tissue that lines the uterus (the endometrium) grows into the muscle of the uterus. This means that the blood and endometrial cells that usually leave the uterus with a period every month are trapped deep within the muscle, causing severe cramping and very heavy bleeding.
This condition tends to right itself after the menopause, but those who suffer from it find that the knife-like cramps and heavy bleeding worsen as they get older, and many women become anaemic through loss of blood.
The symptoms include:-
- very heavy and prolonged bleeding that can include passing blood clots;
- severe cramping during menstruation that increases with age;
- bleeding in between periods;
- painful intercourse;
- if the condition is advanced, it can cause infertility.
However, these signs can be similar to those suffering endometriosis or fibroids, so careful examination is necessary to detect the exact nature of the condition.
“There is little awareness of adenomyosis because, as it is located within the muscle layer, it is difficult to diagnose,” says Dr Sarah Gray, GP Specialist in Women’s Health. “The symptoms are pain associated with the onset of bleeding, so I can pick it up from a pattern of symptoms. If all other tests come back negative, I assume the problem is adenomyosis.”
The statistics are sparse, because the problem has, until fairly recently, only been diagnosed by examining the tissues of women who have had a hysterectomy. Approximately 10% have been found to have adenomyosis, but it is believed to be present in about 5% of all women of a fertile age, and many of these are unaware that they have the condition. It has been found that 12% of women with this disease have also had endometriosis.
Diagnosis can be by means of a vaginal examination which often shows a tender and/or enlarged uterus. Now MRI scans and ultrasound are used by clinical professionals to detect the condition, but none of these definitely prove that adenomyosis is present. The only accurate diagnostic method is still after hysterectomy.
While some GPs believe that hysterectomy is the best way to treat adenomyosis, most women prefer not to have such invasive surgery. For women who have had children or do not wish to conceive, the Mirena coil has proved extremely effective. This intrauterine device works by releasing the hormone progestogen directly into the uterus. This thins the uterus lining, so there will be less, or no, bleeding every month.
“The Mirena coil is 94% effective,’ said Una Stevens, a nurse for the charity Woman’s Health Concern, “but obviously it doesn’t suit everyone. For the first few months following insertion, heavy bleeding can occur, but this can be counterbalanced by taking a progesterone tablet such as Noresthisterone, which will settle the uterus and reduce blood loss.”
Other pharmaceutical treatments include a type of hormonal contraceptive commonly known as the 'mini pill' or progestogen-only pill (POP). It contains the active ingredient desogestrel, which is a synthetic progestogen, similar to the natural progestogens produced by the body. This breaks the hormonal cycle, thereby eliminating any bleeding and cramps.
Gonadoptrophin releasing hormone (GnRH) treatments lower the levels of oestrogen in the body which lightens periods and therefore reduces symptoms, and can reduce the degree of the adenomyosis. However, these treatments cannot be taken for long without a break, and can have adverse side effects such as headaches, depression and weight gain.
“For patients wishing to conceive, I would suppress the cycle until they did want to get pregnant,” says Dr Gray. “That means taking the contraceptive pill continuously – without a gap. Adenomyosis is aggravated by anything cyclical, so the key is stopping the cycle.”
Some male GPs can be dismissive about painful or heavy periods, meaning that many women think nothing can be done, so it important that nurses have a knowledge and understanding of this condition.
“It’s all to do with pattern recognition,” says Dr Gray. “Maybe some GPs don’t listen hard enough and don’t pick up the problem.”
So if you have been having very heavy or painful periods, it is important to keep a record of your periods over the last six months and go to your GP. In addition, Women’s Health Concern (details below) have a team of medical experts available to give advice on gynaecological and menopausal matters.
“Adenomyosis seems to have been put on the back burner,” said Una Stevens. “Fibroids are identified, and endometriosis, but we haven’t had any calls about adenomyosis on our helpline. People don’t seem to know what it is, which is strange. It needs to be highlighted.”
Many women suffer unknowingly from adenomyosis every month. With more information and wider recognition of the condition, periods needn’t ruin your life.
Both Dr Sarah Gray and Una Stevens are associated with Women’s Health Concern
LONDON SW1A 2BY
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Helpline 0845 123 2319 local rate call Mon-Fri 10am – 1pm
British Menopause Society
Nursing Standard, 6th February 2008