Everything You Need To Know About Adenomyosis: Symptoms, Causes and More

Adenomyosis is frequently written off as endometriosis (and the two often coexist) because it’s difficult to investigate, requiring an ultrasound or MRI to indicate a problem and a biopsy after hysterectomy to be sure. Both diseases cause painful cycles and pain during sex but adenomyosis has a stronger association with heavy periods and breakthrough bleeding. To find out more, we spoke to Natalya Danilyants, co-founder of The Center for Innovative GYN Care (CIGC).

What is adenomyosis?

Adenomyosis is a very common condition, the cause of which is really unknown. However, it is thought that the “barrier” between the endometrial lining – the lining of the uterus that sheds during the menstrual cycle – is either damaged or loses its integrity. This causes the endometrial lining to grow directly into the uterine muscle.

With each menstrual cycle, the lining will grow and then breakdown into the muscle itself. The result is much heavier bleeding and pain than with a regular period. Over time, adenomyosis can involve the entire uterus or just separate areas of the uterine muscle.

If the disease is “focal” it involves only a certain area and will cause less pain and bleeding than more advanced disease, called “diffuse adenomyosis.” With diffuse disease, the majority of the uterine muscle is involved with this disease, causing very heavy bleeding, pain, infertility, and other symptoms such as frequency of urination, back pain, pelvic pressure, bloating and distension.

What are the causes?

There are various causes of adenomyosis, the most common being some type of injury to the muscle, usually during surgery. Patients with a prior cesarean section, for example, will have a much higher risk of this disease. The more C-Sections a patient has, the more likely the disease will occur, and often more advanced.

Myomectomy – the procedure used to remove fibroids from the uterus – can also cause adenomyosis since the uterine muscle is “cut” in order to remove the fibroids. Some patients have had no surgery but still have adenomyosis, which may be a genetic trait or a defect in the barrier allowing the endometrial lining to invade the muscle without any known cause.

What is the difference between endometriosis and adenomyosis?

Endometriosis is caused from the same lining of the uterine muscle mentioned above that does not invade into the muscle, but instead implants outside the uterus in the pelvic cavity. Endometriosis can involve the bladder, bowel, lining of the pelvis and even to other areas of the abdominal cavity. This disease can also cause pain and bleeding since the lining grows into surrounding tissues and then bleeds at the time of a woman’s cycle, often causing extensive adhesions, or scarring, which results in pain and infertility. Patients with endometriosis can also have adenomyosis. Most patients with adenomyosis however are often in their late thirties to early fifties, whereas endometriosis is usually diagnosed at an earlier age.

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What are the symptoms?

The symptoms of adenomyosis and endometriosis are often very difficult to distinguish. In both cases, pain occurs as well as heavy bleeding, bloating and distension. Patients with endometriosis tend to have more back pain and pelvic pressure than those patients with adenomyosis. And since the uterus is usually larger with adenomyosis, frequency of urination is more common than with endometriosis.

What does adenomyosis pain feel like?

In many patients, adenomyosis pain is described as “intolerable” often being the worst type of pelvic pain they have ever had. As this disease progresses from focal to diffuse, the symptoms become unbearable. The pain is deep, sharp, stabbing, and can be throbbing with extreme pressure associated with it.

Can adenomyosis cause weight gain?

Weight gain is usually a secondary symptom resulting from fatigue caused by heavy bleeding. Fatigue is a very common symptom with this disease, since lower blood counts, also known as “anemia” can prevent patients from performing normal activities, and often exercise is limited. The more advanced adenomyosis gets, the more anemic patients become and the less active, causing weight gain to be a common result of this disease.

What happens if adenomyosis is left untreated?

Generally, adenomyosis will progress to diffuse disease, and in most cases, patients will seek help. Infertility is a common result of advanced adenomyosis.

The muscle becomes thickened and inflamed, and as a result pregnancy is less likely. Patients interested in pregnancy will benefit from an MRI to determine if the disease is present, the extent of the disease, and where the disease is located.

Up to 60% of implantations to the uterine lining occur on the back wall of the uterus, also known as the posterior wall. If disease involves the backwall, pregnancy may become more difficult. This is because the embryo – the combination of the egg and sperm that will result in pregnancy – will not grow into inflamed muscle involved with adenomyosis.

If you suspect you have this disease and are trying to become pregnant, an MRI should be performed. Ultrasound is not an option for an accurate diagnosis of adenomyosis. An MRI is necessary since it will be able to tell the difference between normal uterine muscle and muscle involved with adenomyosis. If you have symptoms of adenomyosis, always make sure your health care provider orders an MRI to ensure the diagnosis is made as soon as possible.

What are the treatment options?

Generally, they are limited to medical therapy or surgery. For early disease, medical therapy, such as birth control pills, may be all that is required to control symptoms.

For those patients past childbearing, or those with progressive disease that does not respond to medical treatment, partial hysterectomy becomes the best option over the long term. This type of hysterectomy preserves the ovaries so that menopause will not occur.

Many patients note a significant change in their lifestyle and general overall attitude after hysterectomy for treatment of adenomyosis. The pain resolves in most patients completely, bleeding stops, anemia is treated, and energy levels are increased often resulting in weight loss, bloating and frequency of urination disappear, and in many patients their depression improves dramatically.

With a GYN specialist performing your surgery, such as a fellowship trained laparoscopic surgeon, hysterectomy can allow for a very rapid recovery and get you back to your life in one to two weeks. Open surgery is usually not required for this disease if a specialist is involved. I always encourage patients to do their research on this disease and surgical treatment options, find a GYN specialist and get a second opinion before scheduling a surgery with your OBGYN. For those patients with prior C-Section, a specialist is required since patients post C-Section often have a higher level of scarring and more complicated procedures.

What foods should you avoid if you have it?

There really are no specific foods that should be completely avoided. Good food is made to be eaten! Adenomyosis, like endometriosis, requires estrogen to allow for growth and progression of the disease. Estrogen is made from the ovaries. Medical therapy tries to decrease estrogen levels to help treat the condition, but unfortunately over time the disease will progress despite medical therapy, and surgery is often required. Patients with this disease should not bear with years of progressive pain and bleeding, which can often be debilitating and can affect overall quality of life, sexual function, and even progress to depression and anxiety.

Always seek the guidance of your doctor or other qualified health professional with any questions you may have regarding your health or a medical condition. Never disregard the advice of a medical professional, or delay in seeking it because of something you have read on this Website.

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