For almost three decades, I lived a life planned around my monthly menses. Heavy and painful periods took priority over daily life plans. I constantly checked the calendar to see when I would be menstruating. I turned down invitations. I left early from gatherings. I took sick leave from work. I constantly had the urge to urinate. My sleep was frequently interrupted by hot flashes. I suffered bloating and period cramps. I grew anxious if I had to stay away from home during that time of the month. I dreaded long journeys. I packed heavily to ensure enough sanitary pads. Subsequently, I was bleeding large blood clots. My abdomen grew and I felt comfortable only in loose clothing.
When I was in my late twenties, I had finally gotten an answer as to what was causing my painful discomfort. The ultrasound tests revealed I suffered from uterine fibroids, and the gynecologist confirmed this after each regular check-up. I was prescribed contraceptive pills, which helped relieve period cramps but not the heavy bleeding. A warm water bottle, herbal teas, and painkillers were my temporary pain relievers. When I asked if the condition would cause infertility problems, I was told to wait and see.
You may wonder why it took so long to know this. I was born in Tanzania. Growing up there, regular gynecological checkups were uncommon. Additionally, discussing menstrual issues caused discomfort to our families. Abdomen pains in a young girl could easily be a suspicion of pregnancy. Most times I kept quiet or was told it is common to have period pains.
I was ready to start a family. After two miscarriages and two laparoscopic surgeries to remove fibroids, I still experienced dysmenorrhea (heavy and painful menstruation). Sometimes, I was bleeding heavy clots. Four months after the second myomectomy, my poem, “Victorious Farewell,” was published in an online magazine. I felt victorious after writing the poem, but the journey to conquer fibroids was certainly not over.
After the second laparoscopy surgery, I consulted a lead obstetrician who knew my medical history. He could not confirm whether I would have a successful pregnancy or not. I was advised to try again. If needed, I would be hospitalized throughout the pregnancy.
Through my parents-in-law, I learned about Magnetic Resonance-guided Focused Ultrasound (MRgFUS), a non-invasive treatment for fibroids. My beloved gently asked me to consider the MRgFUS treatment, not for conception purposes, but to improve my daily life. I was still counting days on a calendar prior to any social plans. Motivated by the idea to have undreaded social and work life, I made an appointment.
In 2013, I underwent an MRI scan. It took less than a minute for the medical staff to confirm that I suffered from uterine adenomyosis, which sometimes may be confused with fibroids. The medical term was new to me, and I was shocked by this news. I asked the doctor if it was fibroids, or similar to fibroids, but he told me that it wasn’t. I was then informed that adenomyosis was the cause of my miscarriages. Regarding the MRgFUS treatment, it would not guarantee an end to miscarriages. However, it would reduce the heavy bleeding and urinary dysfunctions.
On our way home, confused and trying to make sense of it all, I was haunted by one question: Why was I never advised to do an MRI scan? Nobody knows my body like I do, and I should have been persistent in finding out information.
Upon my return home, I immediately researched “adenomyosis” online. What was this elusive condition I have had for years? Adenomyosis (ad-uh-no-my-O-sis) occurs when endometrial tissue, which normally lines the uterus, exists within and grows into the muscular wall of the uterus. The displaced endometrial tissue continues to act as it normally would — thickening, breaking down and bleeding — during each menstrual cycle. An enlarged uterus and painful, heavy periods can result.[3] Adenomyosis is also shortened as “adeno” by sufferers. Some refer to it as a sister disease to endometriosis because it grows inside the wall of uterus unlike endometriosis, which grows outside the uterus. There was scant information on the topic. Thankfully, a thoughtful woman who suffered from the condition and realised that there was not enough information about adenomyosis had put together an online source, the Adenomyosis Advice Association.
