let’s talk about endometriosis

TW: mention of menstruation, infertility, pain needle

DISCLAIMER I’m not a professional health adviser, thus the posts should not be used for a diagnosis. Every person that has been interviewed for this project shares their own personal stories. If you have any worries concerning your own health, you should consult with a doctor

Rania suffers from endometriosis, a painful disorder affecting female reproductive health. In the following interview, she talks about her life with this bitterpill.

” 1 in 10 women are said to be affected by endometriosis, and I wouldn’t be surprised if more women in my family have it, but were socialised to undermine their own pain.”

Pain is your body’s response, signalling that there is a problem. It is one of the most uncomfortable feelings a living being can experience, and it is even more frustrating if the cause is not found.

Menstruation is a significant part of a woman’s life. It indicates fertility and growth. Although it might cause cramps, an imbalance of hormones and overall discomfort, it should not be associated with immense pain.

“I first got my period when I was nine years old and started noticing problems in terms of abnormal amounts of pain and irregularities when I was 11 years old. Unfortunately, endometriosis is often misdiagnosed or largely dismissed by healthcare professionals and can only formally be diagnosed through surgery. So seven years later, when I was eighteen years old, I had a diagnostic laparoscopy.”

Endometriosis affects the female reproductive system – more specifically the “endometrium” which is the tissue lining the uterus. It is typically shed during the menstrual cycle.

The endometrium of people suffering from the disorder grows outside of the uterus, so during menstruation, the tissue layer is unable to leave the body.

A laparoscope is used during the diagnostic laparoscopy. Organs in the abdomen are examined using this instrument.

“The swelling and blockage of the endometriosis not only leads to cramping and discomfort during and outside of the menstrual cycle. It can also cause painful sex, intestinal issues, frequent bleeding, infertility, and cancer.”, says Rania.

It took many years for Rania to get the diagnosis. What goes through the mind now that the reason for the pain is determined?

Honestly, it was both a relief and extremely disorienting to receive a diagnosis. Part of me was glad I finally had a name for all the pain that I was experiencing, but I had a lot of information dumped on me all at once, and it was overwhelming. I also learned about how hard it is to treat endometriosis, and it scared me to learn about my increased risks of infertility and cancer. After all of that settled, I realised I was kind of angry it took this long for me to be diagnosed.

Women with endometriosis do not only face problems during their period. Consequences resulting from the disorder affect their everyday life fundamentally.

“It takes a toll on me every day. It’s rare that I wake up not in pain, and it affects what I eat, how often I can exercise, and even what kind of menstrual products I can use. It has also made vaginal penetration extremely painful for me.”

What kind of treatments do you go through to help you control endometriosis?

“There are new medications to treat endo, but most treatments are not covered by standard insurance. I have tried conventional medication and birth control, but the minor pain relief wasn’t worth the cost and side effects. To treat it, now I use CBD products, lidocaine, acupuncture, pelvic floor therapy, and massages. I have pain medication for severe flare-ups, but I try to avoid taking too much because it can cause a dependence.

Everything I do to treat my endometriosis only minimises my pain to an extent, I still deal with my pain on a daily basis despite the various treatments.”

Rania uses a variety treatments, such as acupuncture.

“The best way I deal with my endo is to just take it one day at a time. I also lean on my support system, like my family and friends when I’m going through hard times. That’s all that I can do for now.”

Endometriosis changes your plans for the future. What are your main concerns and hopes thinking about the next years?

“My greatest fears for the future are that I might not be able to have children, and I may have to live with this pain forever. I try not to think about those things too much.

I stay up to date on any new treatments and medications for chronic pain and endo. I hope that there will be a cure for it in my lifetime. For now, laparoscopies are an option for me to remove endometrium and scar tissue, but having this procedure too many times is both costly and dangerous for your reproductive system.”

“Discussing women’s reproductive health is still pretty taboo in current society, and my pain often gets dismissed or minimized as “regular period pain” which is pretty offensive to me.”

Endometriosis is a common disorder. Women from around the world unknowingly suffer from the condition. It is hiding behind the fact that many experience cramps during their period, therefore raising awareness is essential to understand the body’s cry for help.

I used the following link to read about endometriosis: https://www.womenshealth.gov/a-z-topics/endometriosis 
However, most of the information was gathered during the interview with Rania. 

A special thank you to Rania for taking her time to share her story.