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If you haven’t heard of Adenomyosis before, you won’t be alone. Despite being commonly diagnosed alongside Endometriosis, adenomyosis continues to underspoken about, despite causing complications for women who suffer from the debilitating condition and being a significant gynecological condition affecting numerous women. While it shares certain similarities with endometriosis, the distinctions are critical for accurate diagnosis and treatment. We spoke to three women in our community to ask them about their experiences.
What is Adenomyosis?
It’s important to understand first what Adenomyosis (ad-uh-no-my-O-sis) is. Endometrial tissue normally lines the uterus, but for women who have adenomyosis, the tissues starts to grow into the muscular wall of the uterus. This growth often causes the uterus to double, or triple it’s normal size, as the uterine walls thicken. Similar to endometriosis, this tissue continues to behave as you’d expect the lining of the uterus to do so during your menstrual cycle. Unlike endometriosis, where the tissue grows outside the uterus, adenomyosis is confined within the uterine muscle. This can cause significant discomfort and heavy menstrual bleeding, pain and a ‘bulky’ uterus.
The symptoms of adenomyosis aren’t commonly known but can be especially debilitating, and include heavy, prolonged menstrual bleeding, severe menstrual cramps, painful sex, pain or cramps in thighs and legs, and often a bulky feeling in the lower belly.
Adenomyosis presents with many similar symptoms to endometriosis, but the key difference is that it is confined to the uterus. Endometriosis can be found across the whole body. Both are progressive diseases that are categorized in stages of severity – IV being the highest. For most women, they are treatable. Unfortunately, it’s too commonly misdiagnosed, and current research suggests that it may affect anywhere from 20% to 35% of women, with a higher prevalence in women in their 40s and 50s. Until recently, it’s been considered a rare condition but as diagnosis pathways improve, the rate of prevalence has increased. At the time of writing, 22% of women with endometriosis will also have adenomyosis.
“I felt sick and dizzy during menstruation. I knew something wasn’t right” – Zara, 28
Zara was 25 when she first spoke to her physician about the symptoms she was experiencing. “My periods were so heavy – but the cramps I had were so bad I felt sick and dizzy.” Zara was initially reassured that heavy bleeds and cramps are normal – but that didn’t sit right with her. “I was nearly passing out with the cramps. How can that be normal? I knew something wasn’t right!”. Zara was referred for a transvaginal ultrasound, and then an MRI which showed that she had Stage II Adenomyosis. “The relief of knowing was immense. Finally, there was a way of treating it. I opted for the coil, and so far it’s been good. I can also use it for birth control and I feel like I’ve got my life back.”
For many others, diagnosis can take a long time. Maria, 42, first saw her doctor when she was 17 and was diagnosed with IBS. “I was told that heavy periods are normal in your teens, it’s your body’s way of letting hormones settle. I had a lot of pain in my belly but they told me that I had problems with my gut and I needed to eat simple, basic foods to ease it.” Maria made changes to her diet which helped ease the stomach issues, but her periods continued to be painful and heavy. “When I was 29, I found I was pregnant. Suddenly, everything felt better. I thought it was over.”
“The uterus was triple the size it should have been” – Maria, 42
It was in a post-birth pelvic exam after her second child was born that Maria’s obstetrician first noted that she had an enlarged uterus. “I thought it just hadn’t gone down enough after birth, but she was concerned and sent me for an ultrasound. The uterus was triple the size it should be, even after having a baby.”. Choosing not to risk any further complications now her family was complete, Maria spoke to her physician about a hysterectomy. “I had a subtotal hysterectomy a year later. It’s not been without complications – and I wish I had known just how big a surgery it actually is – but my symptoms have eased and for the first time in my life, I’m feeling good in myself and my body.”
“When I was told I had Stage IV Adenoymosis, I was devastated”
Adenomyosis is often found in women who also have endometrosis, with an estimated 22% of endometriosis sufferers also having adenomyosis. Helen was diagnosed with endometriosis in 2020, before the pandemic. A year later, she was diagnosed with adenomyosis. “It was a shock – dealing with the endo has been bad enough.” Up until then, Helen had hoped to be able to carry a child despite her endometriosis affecting her ovaries. “I’d frozen my eggs, and was hopeful that although I wasn’t able to conceive naturally, I’d still carry a baby. When they told me I had Stage IV Adenomyosis, I was devastated. I was told that hysterectomy was my only option to manage it and hearing that was such a blow.”
Helen didn’t have a hysterectomy in the end, due to the contraindication with the endometriosis. Hysterectomy can cause issues for women with endo, as the lesions can affect the cervical cuff and remaining ovaries, if they are left. “Instead, I had uterine artery embolization. It’s reduced the pain, and the bleeding. It’s not perfect, but it was an easier decision for me at this time of my life and with the endometriosis still needing further treatment”.
Is there hope for women with Adeno?
On the whole, yes – because adenomyosis is treatable for most. Treatment ranges from hormonal therapies: Birth control pills, progesterone creams, and GnRH agonists, such as Zoladex injections. These suppress estrogen production, Anti-inflammatory medications that are used to reduce pain and bleeding, and surgical options such as Uterine artery embolization which is a minimally invasive procedure to block blood flow to the adenomyosis areas. Finally, hysterectomy is usually recommended in severe cases or when having a baby is no longer an option for you.
Research is ongoing into the causes of both adenomyosis and endometriosis. There is increasing understanding of the impact of these hormonal conditions of women’s lives; but improvements in diagnostic pathways are needed. If you think that you have symptoms of adenomyosis, speak with your doctor and request a referral for an MRI, to check the uterus wholly.
As Maria shared with us, “I just wish I’d known I had it sooner, as there would have been more options for me to treat it.”
3 Quick Ways to Relieve Adeno Symptoms
- Try a warm lavender pack to help soothe pain and cramps, especially during menstruation.
- Using a topical supplement, such as Glow by Hormone University’s Period SOS. This helps to restore hormonal imbalance, and soothes cramps, bloating and inflammation and is so easy to apply.
- Speak to your doctor about NSAIDs – anti-inflammatory drugs – such as Naproxen – can help soothe pain during flare ups.
Kate is a content writer, community creator, and ‘Endo-Warrior’ with Stage IV Endometriosis. She’s mum to three kids, two dogs and unsurprisingly; a lover of wine. Kate lives with her family in Hastings, UK.