Adenomyosis Symptoms

photo of a woman consulting with a female doctor

Had I been aware of Adenomyosis symptoms in my late forties, the choice I’m making now might have been an easy one. Heavy periods kept me from leaving the house at times. The bleeding was so bad, I had to have iron infusions to keep my iron levels in the normal range.

The heavy bleeding lowered my quality of life tremendously. and it seemed like every time I went on a trip, I’d start my period. A business trip from Tennessee to California with a few extra days for fun was completely ruined. Besides feeling bad, the bleeding was so heavy that I ruined several outfits.

When your menstrual period is this heavy, it also affects your mental state. At a time when women begin to notice signs of aging, this extra stressor contributed to feelings of declining self-worth.

In addition, it worried me. I’d wonder how much bleeding was normal at this stage of life and if something was wrong with me. Constant thoughts about my period were distracting me from everything. 

I’ve spent my fair share of time in Obstetrics and Gynecology, having six children and two miscarriages during my 20’s and 30’s. However, I’d also moved a lot and that meant, different doctors, midwives, etc. I didn’t have an OB/GYN that I could trust at that time, so when the doctor I was seeing suggested an IUD, I was apprehensive.

Symptoms of Adenomyosis

The symptoms of adenomyosis are similar to those of uterine fibroids or endometriosis. Heavy bleeding is the primary symptom as well as pelvic pain. Abnormal uterine bleeding is usually the first tip-off that something is amiss. Adenomyosis may cause infertility issues, which is important to note for women who are trying to conceive. However, it is less common in younger women.

  • Dysmenorrhea – Painful periods (worse than regular menstrual cramps)
  • Heavy menstruation, possible anemia
  • Irregular menstrual cycle

Endometriosis vs. Adenomyosis

When chatting with other women about these issues, one question consistently comes up. Is adenomyosis the same as endometriosis? 

The symptoms are similar. 

Endometriosis is when the cells that make up the uterus begin growing outside the uterine wall. In this case, these growths can encroach on other organs such as the ovaries or bladder. So these cells grow outward.

In adenomyosis, the cells grow in the layers of muscles in the uterus itself, but not past the myometrium (walls of the uterus.) With adenomyosis, the uterus can double or even triple in size. Yes, it can make you look pregnant, especially if you are thin as it’s more noticeable, or you have an advanced or severe case.

With endometriosis, there is scarring in the endometrial tissue, whereas in adenomyosis the walls thicken and cause an enlarged uterus. Both conditions can cause heavy menstrual bleeding.

Uterine artery embolization is a non-surgical procedure used to treat fibroids. We’ll get into treatment options for adenomyosis in a bit.

Risk Factors for Adenomyosis

Although no one knows the exact cause of adenomyosis, it is common among people who have given birth and an increased risk appears to be more common with multiple births. Uterine surgery such as a cesarean may also increase the risk of developing adenomyosis. 

Diagnosing Adenomyosis

A transvaginal ultrasound is used to help doctors diagnose suspected adenomyosis. In my case, my functional medicine doctor ordered a transvaginal ultrasound that was then performed at an imaging center and read by their staff. 

Interestingly, the results came back with no findings. Two months later my new gynecologist scheduled me for a second transvaginal ultrasound that he would perform because he knew what he was looking for. He mentioned that it is often overlooked by regular ultrasound diagnostic radiologists, whereas a gynecologist with experience would see it right away.

I was able to watch the ultrasound on a big screen right in front of me the second time around. He showed me the pockets of blood inside my uterine walls. It was plain as day to see once I knew what I was looking for.

A skilled physician will suspect adenomyosis by the symptoms you describe, pelvic exam, a transvaginal ultrasound, or magnetic resonance imaging (MRI). Some doctors might take a biopsy of endometrial cells to determine whether you might have other issues.

However, it is important to note that a diagnosis of adenomyosis can only be confirmed after a hysterectomy.

Treatment Options Presented by my Gynecologists

Hormonal treatments are the least invasive treatment option for adenomyosis; including oral contraceptives (birth control pills) or injections. GnRH agonist therapy is said to reduce the inflammation and size of adenomyosis lesions. 

It is important to note that for women with a family history of cancer, hormonal treatments may not be the best route for the treatment of adenomyosis.

  • Initially, the first gynecologist I went to before I was diagnosed simply suggested an intrauterine device (IUD.) Although because of my family history with cancer, my second doctor said that was not an option. He confirmed what I had already suspected about taking hormones and was part of the reason I didn’t continue seeing the first gynecologist.
  • Endometrial ablation was another option. With this technique, the patient is put under anesthesia and the uterine lining is burned. Recovery time is about This is not an option for me. As I’ve spoken with many women who have had this procedure and ended up getting a hysterectomy within a year. My gynecologist even confirmed that the success rate is, at best, 50/50. After searching the internet, I’m even more convinced that this treatment is outdated and not an option. Endometrial ablation burns the inner lining of the uterus; however, the adenomyosis tissue within the uterine muscle wall is left intact. This makes no sense because adenomyosis is in the muscle wall, not the inner lining. From what I’ve read and heard it ends up making pain worse and bleeding comes back within 6 months to a year.
  • Total hysterectomy. Robotic-assisted surgery for removal of the uterus and in my case, the ovaries as well considering my sister died from ovarian cancer.

By trial and lots of browsing the internet, I realized that ibuprofen would slow the flow somewhat. Being a person who tries to avoid medications when at all possible, I didn’t even keep ibuprofen in my medicine cabinet. Anti-inflammatory drugs can help with pain as well.

Here’s the kicker: Adenomyosis goes away on its own after menopause due to declining levels of estrogen. 

Where I am now

Waiting for menopause. 

Right after my 50th birthday, I had bleeding that lasted nearly two months. That’s when I knew I had to go to a women’s health specialist. My functional medicine doctor had prescribed progesterone which did eventually make the “never-ending period” stop. Although, the following month, I had another period that lasted nearly 4 weeks.

This caused a drop in my blood supply, particularly my iron levels were low and I had to have an iron infusion. Don’t get me started

By trial and lots of browsing the internet, I realized that ibuprofen would slow the flow somewhat. Being a person who tries to avoid medications when at all possible, I didn’t even keep ibuprofen in my medicine cabinet. 

I have been through the hot flashes in my late forties, but I’m still getting my period. Clearly, I don’t have any use for my period at this stage in life. I have six children and obviously no plans to have any more.  

Each month I hope it doesn’t come back and I’m envious of my friends who say they stopped having their period at 45! I’m not jealous of my friends who’ve undergone hysterectomies. The horror stories. 

In fact, one friend who had the robot-assisted hysterectomy, which is said to leave very little scarring, nearly died. Apparently, the surgeon who performed the surgery nicked an artery and she very nearly bled to death. Thankfully, they found an interventional radiologist who was able to go in and repair the artery, but her recovery was exacerbated by the excessive blood loss. Not to mention the emotional trauma. 

She didn’t share her story to frighten me, and I’m not sharing it to throw shade on surgery, but I’ve had more than my share of doctor errors and I’m cautious. IF surgery is my best option, then that’s the route I’d take for sure. However, at 50, I wonder if menopause is just around the corner?

I’ve been hoping to say goodbye to my period for the last several years. My doctor said I could have another 4-5 years before I stop having my period. I’ve asked my aunts and my mom about when they experienced menopause and the answers haven’t helped me make a decision.

Healthcare Problems

Ironically, the hospital where my gynecologist performs surgery is out of network, even though his practice is in-network. The other hospital where he could potentially perform the surgery is on hold for “elective” surgeries due to covid. 

This puts me in a position to wait. If things were “normal” in the world, I might already be scheduled for surgery. So now I’m contemplating my choices. 

I’d love to hear from you if you’ve experienced anything similar or you’ve had a wildly successful hysterectomy.

Sources:

Endometrial Ablation Might Make Pain Worse: https://www.sydneyfibroidclinic.com.au/why-endometrial-ablation-for-adenomyosis-might-make-pain-worse/

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