When endo almost ended me

For most of my life, my uterus was in a state of constant pain and stress.

Though I didn’t know it at the time, I was suffering from multiple conditions, including endometriosis, a debilitating, painful condition caused by an excess growth of endometrial tissue in the womb which can often find itself elsewhere in the body.

According to the Johns Hopkins medical website, Endometriosis is a condition in which endometrial tissue grows outside the uterus instead of staying where it’s supposed to, which is inside the uterine wall to prepare the uterine lining for a possible pregnancy. Endometrial tissue growing in these areas does not shed during a menstrual cycle like healthy endometrial tissue inside the uterus does. The buildup of abnormal tissue outside the uterus can lead to inflammation, scarring and painful cysts. It can also lead to buildup of fibrous tissues between reproductive organs that causes them to “stick” together.

Endometriosis most often occurs on or around reproductive organs in the pelvis or abdomen, including:

● Fallopian tubes

● Ligaments around the uterus (uterosacral ligaments)

● Lining of the pelvic cavity

● Ovaries

● Outside surface of the uterus

● Space between the uterus and the rectum or bladder

More rarely, it can also grow on and around the:

● Bladder

● Cervix

● Intestines

● Rectum

● Stomach (abdomen)

● Vagina or vulva

A textbook description, yes, but my uterine pain has been a part of my very existence since experiencing my first period at the tender age of nine.

Dysmenorrhea was the official diagnosis, and I came to dread the monthly painful onset of cramps, nausea and more. It was normal for me to sit out various events whenever that time came and I would always find myself in a state of anxiety every month, and the times when I was pain free, my art comforted me.

When I eventually became a mother, the old wives’ tale of having one’s painful periods disappearing after going through childbirth did not apply. In fact, my pains were even worse than before, and my screams would be just as loud as when I had delivered my now adult daughter.

Sadly, in trying to find a solution I was often dismissed by some physicians who said the pain was all in my head. But why would I even make up something that would leave me a crippling, babbling mess, unable to stand upright and also bleeding for 21 to 30 days straight – yes, you read those numbers correctly – at a time?

My search for answers would take me down the rabbit hole of multiple visits to my GP, various hospitals and clinics. Bit by bit, the mystery of my suffering would unravel with the revelation that I also had fibroids (after doing laparoscopic surgery in 1997), and in 1998, they were excised. Oddly enough, I was not surprised at the fibroid diagnosis, since my entire matriarchal line had them as well. However, this was only the beginning of my journey.

The fibroids returned with a vengeance within one year, and two ultrasounds later would reveal a series of endometriomas within my uterus and ovaries. Based on my childhood history, two reputable gynaecologists would confirm that I had been suffering from endometriosis all this time. I was glad for the official diagnosis, but finding out there was no cure broke my heart. To add insult to injury, my tummy was rising, and I was looking as if I was already three and a half months pregnant and still dealing with pain.

Two further scans would show that my endometriosis had given way to another condition, adenomyosis, an advanced form of the disease, where the adhesions/endometriomas turn inward, invading the uterus itself, causing it to enlarge. Adenomyosis also weakens the walls of the uterus considerably, making it even harder to conceive. Think of what happens to a balloon when it's overfilled with water; the bigger it gets, the thinner the surface area gets until it eventually breaks.

Frighteningly, a cystic mass was also found on my left ovary, along with a nest-of-egg-sized fibroids that filled my entire uterine cavity. More testing was ordered at the Trinidad and Tobago Cancer Society to determine the nature of the mass.

Thankfully, it was benign, but still troublesome. Mentally, all of this was taking a huge toll on me and by now, my quality of life was non-existent and I was hardly even painting or drawing any more. It was, for lack of a better word, absolute torture. I was a walking ball of painful nerve endings and was ready to do anything to end it.

I was referred to a reputable gynaecologist who, after reviewing my entire history, recommended that I remove my uterus and the damaged left ovary in an operation known as a unilateral oophorectomy and hysterectomy. I was already dealing with anaemia from the constant blood loss and by this time my stomach had risen even higher. Despite rationalising how we could possibly save my womb for a possible future pregnancy, it was not meant to be, as trying to remove the fibroids was not a viable option because of the presence of scar tissue from the previous surgery. Plus, with my already thinning walls from the adenomyosis, I would haemorrhage.

I wasn’t going to give up.

It took the help of many, many hands to eventually get the funding together to have my operation done, and by God’s grace, I had my surgery in May of 2005.

Thankfully, all went well, and I have not been plagued by any endometrial pains of any kind since. It may be an extreme direction for some, but everyone has their own path to tread, and I did what I knew was best for me and my body. I have absolutely no regrets going this route, and I am filled with gratitude to all my friends who helped me. Eighteen years later, I am still free from endometrial issues, and I look forward to each new day with grace and joyful anticipation.

(Inset)

Endometriosis risk factors

Research shows that there are some things that put a person at higher risk of developing endometriosis, including having:

A mother, sister or daughter who has endometriosis

An abnormal uterus, which is diagnosed by a doctor

Early menstruation (before age 11)

Shorter menstrual periods (less than 27 days on average)

Heavy menstrual periods lasting more than seven days

Some things that can lower the risk of endometriosis include:

Pregnancy and breastfeeding

Having your first period after age 14

Eating fruits, especially citrus fruits

Endometriosis prevention

Endometriosis is an idiopathic condition, meaning there is no known cause. There are also no specific ways to prevent endometriosis. However, being aware of the symptoms and whether you could be at higher risk can help you know when to discuss it with a doctor.

Halcian Pierre is a Trinidadian mother and self described mid-career artist whose works of art are always quick to bring smiles to everyone viewing them. Her distinct painting style is known as Caribbean Neo Pop art, which she defines as a colourful blend of neo pop art, Caribbean folk art, realism and 60s pop art using acrylics and gel pens to bring her pieces to life. Halcian creates vividly colourful works on canvas using acrylics, ink and gel pens, but she is mostly known for both her large and mini neo pop paintings of women of all ages wearing colourful African inspired clothing and headwraps.