During the month of March, Endometriosis Awareness Month takes place across the globe with a mission to raise awareness of a disease that affects an estimated 200 million women worldwide. Similar to infertility, this condition can hold a lot of stigma, so women are often anxious to speak openly about their experience. Additionally, it can be challenging to receive an official diagnosis for this condition.
At OvuSense, we strive to bring a voice to women struggling with infertility. We would like to use this blog to bring additional awareness to endometriosis, as it is a leading cause of infertility in women.
What is ‘Endometriosis’?
Endometriosis is a condition where the lining of the uterus grows outside of the uterus. The condition, which can be extremely painful, affects anywhere from 6-10% of women. During menstruation, the endometrial lining is shed from the uterus, but the lining that has attached outside the uterus has no way of leaving the body. While there is no known cause for endometriosis, some believe there is a genetic link for this condition.
According to the Endometriosis Foundation, women with endometriosis are more likely to experience infertility due to the molecules produced by inflammation and anatomy changes that are common for women with this condition. Other common symptoms include painful intercourse, chronic pelvic pain, fatigue, heavy or irregular bleeding, or gastrointestinal problems.
Receiving a Diagnosis
According to Kate Davies, RN, BSc(Hons), FP Cert, OvuSense’s fertility nurse consultant, on average it can take 7 years for a woman to receive a diagnosis of Endometriosis. This in part, is due to difficulty in diagnosing the condition as it can be frequently misdiagnosed as IBS (irritable bowel syndrome). In the UK, the Royal College of Nursing have developed a fact sheet to help clinicians in diagnosing endometriosis.
This fact sheet is also useful for women too, Kate continued, as the document includes a checklist of symptoms which women can complete and then take along to their doctor. This factsheet educates and empowers women to take ownership of their health and will help reduce the time it takes for a woman to be diagnosed and then treated for endometriosis.
Managing the Symptoms
While endometriosis is usually viewed exclusively as a reproductive disorder, Zermina Akbary BSN, RN, CHHC, Fertility Nurse Consultant with OvuSense and nutrition specialist, would like to highlight that it's actually a whole-body health condition with many underlying contributing factors.
According to Zermina, research hasn't identified exactly what causes it, there is technically no "cure", and the treatment options in conventional medicine are limited. Many of the common symptoms associated with this disease are not even driven by the presence of the endo lesions themselves but are a result of other health issues that tend to occur alongside endo, such as digestive problems, nutritional deficiencies, blood sugar imbalances, and immune system dysfunction.
On the positive side, this means that patients have a lot of options for how to focus on their healing journey so they can reduce their pain and support their fertility, Zermina continued. It's important to work with a practitioner that will look at lifestyle, nutritional deficiencies, environmental toxins, inflammation and immunity to create hormonal balance with endo to optimize fertility and overall health.
What Does ‘Endometriosis’ Mean to You?
We asked our Instagram audience what endometriosis meant to them. Below are a few of their responses, which depict what it can be like to live with this condition.
“I was officially diagnosed with endo 12 years ago but unfortunately the treatment and research is still the same. I'm lucky I found my own way of living pain free. For me it was going a holistic and eastern medicine route. I haven’t had a flare in over 6 years nor have I been on birth control since. I shared my journey on my blog.” – Cahill, Life Outside Leggings
"Pain all month long. Why does it take so long to diagnose?" – CK Brunetti
“Diagnosed at 21. Pain, fatigue and infertility." – @Ddwhurst
“I have stage 4 endometriosis, the worst stage. It gets me in the mornings when I wake up. It’s around my womb and bowel. When I’m on my period (or the few days after), I feel like I’m going to pass out when the pain starts. It took 22 years for someone to acknowledge that the pain was real...” – @KeepOnBabyDancing
“For years I had the problem, like many, where doctors would treat me like I was dumb and I didn't know what period pain was, tell me that there was nothing they could do as it was normal to be in pain and have such a heavy flow as it varies from person to person. I was told to take some Panadol or Nurofen and use a heat pack. THAT WAS IT!?!?! I couldn't believe it...Even I knew it wasn't right and I'm not a medically trained professional. Years went by of me getting ultrasounds and other scans done. All they picked up were a few cysts on my ovaries. I was told they too were normal...
“For 3 years I gave up my doctor visits and just dealt with the pain at home and I would push myself through shifts at work or visiting friends and family. It eventually came to the point I wouldn't even express the pain on my face as no-one seemed to care how sore I was and apparently it was 'normal' and others felt that way too. I had enough and went back to my doctor. FINALLY I was referred to a specialist as my doctor had a few guesses as to what it could be given my family history. Even the specialist I saw didn't think I had endo but he thought maybe it was something else...
“Firstly, they suggested I try months worth of 'the pill' or the Implanon or other contraceptives. I refused, stood my ground and asked for a laparoscopy. I had the surgery and much to my specialists surprise I had a large fibroid on the back of my uterus that went undiscovered somehow considering all the scans I've had, many cysts on my ovaries and what do you know – endometriosis as well. Trust your gut ladies! Speak up if you know something isn't right, be persistent and get to the bottom of your health issues. Never let yourself be told "it's all in your head" because it's not.” – Alethea, The Hopeful Pineapples
If you’re struggling to manage your symptoms, or looking for more information about endometriosis, look for a support group online to connect with others that share your experience. You can also find an endometriosis specialist in your area online, or by contacting local providers to see if they are trained in treating or managing this condition.
Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.