1 in 5 women suffer from this unknown menstrual disease

Heavy, painful periods? 1 in 5 women suffer from this little known menstrual disease

Eighteen months ago, I ripped the band-aid off and decided to come off the pill. I knew this would mean the return of debilitating menstrual pain and I wasn’t wrong. Two trips to the emergency department, agonising pelvic pain, anaemia and chronic fatigue, are just some of the symptoms that decided to rear their ugly head each month. 

During one menstrual cycle my period was so heavy I remember waking in the middle of the night to the room spinning out of control. I felt debilitated, dizzy, and struggled to even walk to the bathroom only two metres away. I nearly blacked out from the blood loss and thought to myself this cannot be normal to experience a period this way.

Nearly fainting from the pain of your period should not be considered normal. In fact, the combination of heavy and painful periods each month is something that should raise suspicion and be investigated further.

When I discussed these symptoms with my doctor, she sent me for an ultrasound along with a referral to a gynaecologist. The ultrasound results shocked me, indicating I have a condition called Adenomyosis. A menstrual disease I had never even heard of before.

Adenomyosis pronounced ad-uh-no-my-O-sis. Adeno (gland), myo (muscle), osis (condition) is a condition of the uterus (womb) where endometrial tissue exists within and grows into the uterine wall and affects 1 in 5 assigned female at birth. It is said to be at least as bad as endometriosis, sometimes worse, mainly because it goes undiagnosed.

While my diagnosis was certainly unexpected, it also made me question how many other people like me didn’t know about the disease and are putting up with painful, heavy periods in silence.

Passionate about raising awareness for the condition is Interventional Radiology Specialist, Dr Eisen Liang from the Sydney Fibroid Clinic, “Adenomyosis is a little known and under recognised condition that can cause heavy and painful periods. Awareness and clinical suspicion by GPs are the keys to reaching an early diagnosis.”

On average the disease can take up to 9-12 years to be properly diagnosed and a common misconception is that it only affects people in their 30s and 40s, however this is not true as it can also appear in young adolescents as well. In my case, I believe I was un-diagnosed with both endometriosis and adenomyosis for up to 15 years, as I have struggled with symptoms from both conditions since my teenage years.

So, what are the symptoms to look out for no matter your age? 

Symptoms

If you’re changing your pad too often during the day, experiencing heavy or prolonged menstrual bleeding, severe cramping, pelvic and back pain, referred leg pain, infertility, pain during intercourse (dyspareunia) or blood clots that pass during a period then this could be sign of adenomyosis.

Due to the excessive bleeding people can also develop anaemia (deficiency in the number of red blood cells) or iron deficiency causing tiredness and dizziness.

While adenomyosis can be difficult to identify, there are several options to assist in receiving a proper medical diagnosis.

The first option is an ultrasound with a high-definition transvaginal probe. Ideally, this should be performed by a gynaecologist or sonographer that specialises in these specific health conditions.

The second option is an MRI (Magnetic Resonance Imaging) which will collect pictures of soft tissue such as organs and muscles that won’t show up on ultrasound. Dr Liang says that in clinical practice MRI is far more accurate in diagnosing adenomyosis compared to the more subtle signs on ultrasound.

Treatments

Painful, heavy periods can be hard to manage so finding the right treatment plan can help to relieve symptoms and improve quality of life for many people. 

Short term treatment options include pain-relieving medications, menstrual cycle suppression and induced temporary menopause. It’s important to note that while these courses of action may assist in reducing period pain and heavy bleeding, they won’t address the underlying disease.

Currently the Mirena, a hormone-releasing IUD is the most effective non-surgical treatment option available. While many people have a positive experience from the Mirena, some may develop significant side effects so it can be a case of trial and error to find the most suitable option. 

From a surgical perspective, hysterectomy is made available for suitable candidates such as those who have already given birth and don’t wish to have any more children. While a hysterectomy provides a cure by removing the uterus and rids the body of the disease, it is a major surgery with potential risks and complications and therefore should be considered with caution and as a last resort.

Currently Australia has the highest rate of hysterectomy in OECD (Organisation for Economic Co-operation and Development) countries. Dr Liang says, “In Australia, we do 250 hysterectomies per 1000 women per year. Compared to Denmark who has a similar demographic and standard of living who only do 20 hysterectomies per 1000 women per year.”

“We actually have a safe, minimally invasive, non-surgical alternative to hysterectomy called Uterine artery embolisation (UAE) which is known to reduce heavy periods, relieve pain and has been shown to be as effective in 90% of women suffering from adenomyosis.”

During the procedure tiny particles are injected inside the uterine arteries to block the blood flow, thereby starving the adenomyosis tissue, helping to alleviate symptoms.

Dr Liang says, “People deserve a modern and individualised approach to their menstrual issues, and therefore making the diagnosis of adenomyosis is prudent to their optimal treatment.”

As I haven’t had children, some of these treatments are currently not an option including hysterectomy and UAE but at least I know what is available when the time comes. After years of being un-diagnosed and feeling my period was not normal, I now have a sense of validation and feel more empowered than ever to better manage my menstrual health.

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