“I was always in distress during my period” – The painful reality of living with endometriosis

“My dad is a doctor, but I couldn’t tell him because he’s the kind of guy that can handle any medical case except mine. He was always downplaying it whenever I would say I had serious cramps and couldn’t get up from the bed. I didn’t have any personal money to go to a hospital; I wasn’t working, so I just kept self-medicating with painkillers like ibuprofen or diclofenac, but these made me develop ulcers.” – Fiona.

“I used to have really painful periods & really heavy flow when I was in secondary school. My period used to last 7 days with 3 days of intense pain & it was very irregular. I thought it was normal cos almost everyone in secondary school had menstrual pain, so I didn’t really see a doctor till I got much older.” – Tami.

“I was properly diagnosed in 2018; I always suspected something else was wrong aside from the usual primary dysmenorrhea. Luckily, I worked at a women’s hospital at the time (Southshore Women and Children’s Hospital). My doctor saw I was always in distress during my period. Once, I had to be put in an Uber after fainted at the cinema.”- Dr Gbemisola.

As a woman, the chances that you might develop period complications are very high. From PCOS to PMDD and PMS, the issues surrounding women’s reproductive systems are more than enough to reduce the quality of life significantly.

Endometriosis just so happens to be one of the many reproductive issues women face.

What is endometriosis?

According to the World Health Organisation, endometriosis is a disorder that affects roughly 10 percent of women of reproductive age all over the world. It is a disorder where the tissue, similar to the lining of the uterus, grows outside the fallopian tube, resulting in excruciating pain during periods, dyspareunia and pelvic pain. This disorder often begins at a person’s first menstrual period and lasts until menopause.

Despite the commonality of the condition, endometriosis still doesn’t have a cure and requires a laparotomy before a diagnosis is made. While speaking with three women about their experience of living with endometriosis, they explained that they thought it was normal or that they were being ‘dramatic’ until the pain became unbearable.

While speaking with Dr Gbemisola Jones, a medical doctor and someone living with endometriosis, she explained the various symptoms that call for a proper diagnosis of endometriosis. They include worsening pain that affects your daily activities, constipation, diarrhoea, painful intercourse, which happens to most people with endometriosis because the uterus is mostly retroverted, and many more.

According to Dr Gbemisola, being a doctor only prepared her for the diagnosis, but the dyspareunia and the bloating were certainly unwelcome surprises.

Living with endometriosis

Living with endometriosis means living with chronic pain and discomfort and letting it dictate the quality of life, not to mention the fertility issues it brings to women who are actively trying to conceive.

Speaking to Fiona, Dr Gbemisola and Tami (pseudonym) enlightened us on the diagnosis process and how much trouble they had due to the condition. For Tami, she had endured the pain all through secondary school up until she couldn’t anymore. When she eventually met with a doctor,  she was diagnosed with endometriosis.

“When I got to the doctor, I told him my symptoms & he did some physical exam & scheduled me for a scan cos he already suspected endometriosis. So I was diagnosed in 2019 & started treatment because I had to undergo surgery. I had a 5cm cyst on both my ovaries. I underwent a laparotomy in 2019 & since then, my period has been regular, with little or no pain for most months. I felt really relieved as I finally had a diagnosis.”

But for Fiona, her diagnosis and treatment process has been quite the journey. With two major surgeries and multiple cyst drainage procedures, living with the condition has been a rollercoaster for her.

“Before that, I was on hormonal injections to stop my period. Basically, throughout 2020 and some parts of 2021, I was not on my period. I’ll stop the period for 3 months and resume, then 6 months and resume. It was working, but I was always in the hospital because of pain. Still, I’ve had cyst drainage procedures. More than a handful. Ever since my last surgery, though, I’ve been feeling okay. So far, I don’t have any cysts, and I’m not in any pain.”

Dr. Gbemisola, on the other hand, had a straightforward diagnostic process:

“I think being a doctor somewhat prepared me for the diagnosis; however, it didn’t prepare me for the dyspareunia or the bloatedness. In 2018, I had Zoladex before and after my laparoscopy, which was for proper diagnosis because that’s how you can only diagnose endometriosis. I also had some ablation done.”

Treatment options

According to the NHS, there is no cure for endometriosis. However, the condition can only be managed. For every woman living with endometriosis, there are different treatment options which they can choose from.

Here are a few available treatment options for endometriosis according to endometriosis.org:

Medical Management

Pain Relief Medications: Over-the-counter pain relievers like ibuprofen (Advil, Motrin) or naproxen (Aleve) can help alleviate the pelvic pain and discomfort associated with endometriosis. In more severe cases, prescription-strength pain medications may be necessary.

  • Hormonal Therapies: Hormonal treatments aim to suppress menstrual cycles and reduce the growth of endometrial tissue. Common hormonal therapies include:
  • Birth Control Pills: Oral contraceptives containing estrogen and progestin can help regulate the menstrual cycle and reduce symptoms of endometriosis.
  • Progestin Therapy: Progestin-only contraceptives, such as the contraceptive injection (Depo-Provera) or the hormonal intrauterine device (IUD), can help alleviate symptoms by thinning the endometrial tissue and reducing menstrual flow.
  • GnRH Agonists and Antagonists: Gonadotropin-releasing hormone (GnRH) agonists and antagonists work by temporarily suppressing ovarian function, inducing a menopause-like state to alleviate symptoms. However, long-term use may lead to bone density loss and other menopausal side effects.

Surgical Interventions

  • Laparoscopic Excision: Laparoscopic surgery, or minimally invasive or keyhole surgery, is a common surgical approach for diagnosing and treating endometriosis. During laparoscopic excision, endometrial implants and scar tissue are carefully removed from the pelvic region using specialised instruments inserted through small incisions in the abdomen. This procedure helps alleviate pain and may improve fertility outcomes.

  • Hysterectomy: In severe cases of endometriosis where other treatments have failed or when fertility is not a concern, a hysterectomy may be recommended. A hysterectomy involves the surgical removal of the uterus and sometimes the ovaries and fallopian tubes. This procedure provides a definitive solution for endometriosis-related pain and symptoms. However, it is considered a last resort due to its irreversible nature and potential impact on hormonal balance and fertility.

Alternative and Complementary Therapies

  • Acupuncture: Acupuncture involves the insertion of thin needles into specific points on the body to promote pain relief and overall well-being. While research on acupuncture’s efficacy for endometriosis is limited, some individuals report symptom improvement with regular acupuncture sessions.
  • Dietary Modifications: Certain dietary changes, such as reducing consumption of inflammatory foods (e.g., processed foods, refined sugars) and incorporating anti-inflammatory foods (e.g., fruits, vegetables, omega-3 fatty acids), may help alleviate symptoms of endometriosis. Additionally, some individuals find relief from symptoms by avoiding trigger foods known to exacerbate inflammation.

 Here are the current treatment options Fiona, Tami, and Dr Gbemisola are exploring:

“For now, I’m just on folic acid and painkillers for my period. My last surgery really went well cos, for now, I’m not in any pain, and I don’t have any cysts.” – Fiona.”

“I’ve been on an IUD, which has helped significantly; my pain from my period used to be 300/10, now it’s about 5/10, and I don’t use any pain relief .. so far, I think the IUD was the best thing that happened with me with endometriosis.” – Dr Gbemisola

“I don’t joke with my meds cos I love the feeling of not almost dying every month. Presently, I’m on Primolutin to stop some bleeding I have been having for a while. Been on it for 2 months.”- Tami

The reality of living with endometriosis is one that not many women would experience in their lifetime. Living with endometriosis means a lifetime of doctor appointments, excruciating pain, and the possibility of never being able to conceive.

If you currently experience any of the aforementioned symptoms, here’s a list of support groups you can join and a list of resources you will need to understand the effects of endometriosis in women’s lives.

Endometriosis is more than just “painful periods,” and it is more than “just being dramatic.” Endometriosis is a lifelong condition, and we must all know its effects. Remember, excruciating pain on your period is not normal, heavy bleeding is not normal, and most importantly, you’re not just being dramatic.

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