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Adenomyosis

Disclaimer: I am not a doctor, the information on these pages is gathered from my own experience, books, websites, and other people's experience. I will not be held responsible for any injury resulting from this information. If you have a medical condition, you should seek qualified medical advice and supervision at all times.

What is adenomyosis | Detection | Treatment | Resources

What is Adenomyosis?

Adenomyosis is very similar to endometriosis, in that it is the growth of the endometrium (uterine lining) where it should not be. Endometriosis grows on the surfaces in the pelvic region, and adenomyosis grows inside the muscle wall of the uterus. The endometrial tissue in both cases follows the menstrual cycle exactly as it does inside the uterus and bleeds during menstruation.

Adenomyomas (clumps of endometrial cells inside the wall of the uterus) bleed, creating a pocket of blood, very much like a bad bruise, which in itself is painful. Because this is growing inside the muscle, it can't respond properly to control the menstrual flow. This results in very heavy bleeding with many blood clots being passed.

A description I found once of this muscle reaction was "like trying to spit through a mouthful of marbles".

This tissue doesn't seem to start bleeing a couple of days in advance (like endometriosis), but the bubble of blood inside the wall causes more and more pain towards the end of the menstrual cycle.

Adenomyosis can occur by itself, or with other diseases, most commonly with endometriosis and irritable bowel syndrome (IBS). Fibroids, cysts, and other pelvic diseases may also occur with it. Adenomyosis is a relatively uncommon condition, typically suffered by pre-menopausal women about the age of 40, but any menstruating woman may suffer from it.

As with most of the pelvic diseases, there are no known causes, but unfortunately there is not much research into this disease, as it mostly affects older women, who can treat it by having a hysterectomy. Less is known about adenomyosis than endometriosis.

It can cause infertility and more often miscarriages, as it is a growth that disrupts the tissue supporting the foetus.

How is it detected?

The most reliable detection is a biopsy of the removed uterus after a hysterectomy. The surgeons and pathologists can take their time and thoroughly test all areas of the muscle.

One other diagnosis method that has a decent chance of success is an MRI, to detect abnormal tissue inside the uterine wall.

My uterus, with adenomyosis visible

A needle biopsy may be done during a laparoscopy, but this relies heavily on the surgeon's experience at detecting adenomyosis through the outer surface of the uterus, and sampling exactly the right spot. Boggy, lumpy or otherwise malformed sections of the muscle wall may indicate an adenomyoma inside that section of the uterine muscle.

One other common method of initial diagnosis is using ultrasound to check the size of the uterus. The uterus may (or may not) 'swell' and enlarge with the scar tissue and blood inside the muscle wall. Often sufferers will talk about a '4 week size uterus' - comparing the size of their enlarged uterus with the size of a pregnant woman's uterus.

Ultrasound technology has been substantially improved to show blood flow. Adenomyomas may be shown with abnormal blood flow, and the more advanced growths are now easily detected with this method, providing the examiner is trained to know what they are looking for.

A CA125 blood test may show the uterus is damaged. Cancer Antigen 125 is released when the uterus, ovaries, fallopian tubes, liver, chest cavity or abdominal cavity is inflammed or damaged. Because such a wide variety of diseases can cause elevated CA125 levels, this test is very imprecise and unreliable. More information.

Typically a diagnosis of adenomyosis is given when everything else is ruled out.

How is it treated?

The preferred method of treatment is a partial or full hysterectomy. For those sufferers who do not have endometriosis, a partial hysterectomy or endometrial ablation will most likely get rid of the disease and the symptoms, also avoiding the hormonal change to menopause (because the ovaries are left in). Sufferers who have endometriosis as well will need a full hysterectomy, if the ovaries are left in, the endometriosis growths will keep growing (the ovaries will still produce estragen, feeding the growths).

Obviously all methods involve becoming infertile. A full hysterectomy causes the shift to menopause (no matter the age) as the estragen producing ovaries are removed. Typically this results in the sufferer needing to take hormone replacement therapy (HRT) for many years, and can cause or speed the development of other diseases, including osteoporosis.

Because most sufferers are typically close to menopause anyway, these options work well. For those rare cases who develop adenomyosis at a much younger age the choice of treatments is horrible (especially if they want a family).

Using endometriosis medications such as continuous high progesterone birth control (BCP), or the newer medication Visanne (progestin), may control the growth rate of the adenomyomas and the pain by avoiding periods.

A newly developed Intra Uterine Device (IUD) called Mirena has been trialed on adenomyosis sufferers and has been found to decrease the severity and in some cases remove symptoms. It does not treat the adenomyomas (growths) at all, but delivers a low dose of progestogen directly into the uterus lining, slowing and sometimes stopping the growth of the lining (and thus periods). It seems to be more effective than the continuous pill as there seem to be much fewer side effects. Those who also suffer from endometriosis would be recommended to stay on a very low dose pill to stop the action of the ovaries.

This IUD is available from family planning centres and doctors by prescription, and requires a qualified professional to insert the device. It may require a local aneasthetic for those who have a low pain tolerance. It can be removed by a doctor at any time, and does not seem to affect fertility after removal, unlike the pill and it has a low failure rate with contraception while worn.

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