Endometriosis Update & Poem: Advocacy for Women’s Health

(Written 16. May 2023)

This year, I’m taking a stand – we need to invest more in #womenhealth!

Celine Gjersvik / CG Art & Poetry, poem here.

These were my words back in March 2023, two months later, I’ve gotten confirmed with both Adenomyosis and Endometriosis. A 10-year fight for my human right to be heard!

When I was 15/16 years old, I mustered the courage to visit my first gynecologist, seeking help for my abnormal pains and expressing my suspicion of having Endometriosis. However, my attempts to convey my symptoms fell on deaf ears as the doctor appeared unconvinced, downplaying the significance of my concerns. It was disheartening to be denied without further exploration or consideration. I was blankly told no. I left the appointment with a prescription for medication to manage my heavy bleeding, which had become so severe that I had to hastily rush to the bathroom during class to avoid any embarrassing mishaps. I found myself relying on the kindness of my female classmates, often requesting extra pads or tampons to make it through the school day without having to leave.

My period challenges continued, and so did the doctor’s unwavering “no” and reluctance to explore further. Looking back, I can’t even recall how many times I’ve heard that definitive denial, leaving me feeling unheard and dismissed. It reached a point where, three years ago, I gave up and convinced myself that this was the end of the road, resigning to find a way to cope with the pain. Resulting in a new OP prescribing me Naproxen as this was the only medication that gave me some relief from the cramps and the numbness in my legs manageable for work and everyday life. Even though some pain persisted, it really felt life-changing. Down the line today, that medication might have contributed to inflammation in my gut, which comes with its own set of challenges. This doesn’t mean that the medication should be avoided altogether, but it’s important to be cautious and aware of potential side effects and be prepared to address them if they arise. Additionally, it’s possible that my food allergies have also contributed to the inflammation, an aspect that my doctors are still investigating. This acknowledgment, recognizing the complexity of the situation and embracing shades of gray instead of black-and-white certainty, is something I have longed to hear from medical professionals. It’s a reminder that doctors don’t need to have all the answers, but they should acknowledge their boundaries of knowledge and remain open to different possibilities.

Even though I had given up or set aside my concerns, life had different plans for me. About a year and a half ago, I went to a gynecologist because of pain that I suspected might be due to a cyst, and once again my intuition was correct. However, during the examination, the doctor also discovered abnormal tissue and asked important questions to investigate further. This led the doctor to suspect that I could, in fact, have Endometriosis and encouraged me to seek additional tests. That appointment was a pivotal moment that set things in motion. At the time, that was it, but I did thank him dearly for actually following up, asking questions, and most importantly, both listening to me and believing me.

Last year, when my health took a complex turn with multiple infections, months of vomiting, and fainting episodes, I consulted various doctors, including specialists in women’s health. Following a thorough examination, the private doctor diagnosed me with Adenomyosis but recommended attempting birth control pills before considering a laparoscopy and raised doubts about the Endometriosis diagnosis. Unfortunately, due to several reasons, the pill was not a viable option, and other doctors also advised against it. As time went on and more tests and diagnoses were conducted for other infections and allergies, it became clear that my recovery was not progressing as anticipated. Eventually, multiple doctors encouraged me and the system with referrals to further investigate the possibility of Endometriosis, leading me to finally undergo a laparoscopy surgery. A surgical procedure serving a dual purpose: to diagnose and potentially provide relief if any abnormal tissue is found.

I vividly recall feeling incredibly anxious and frightened, but I didn’t hesitate to take the first available appointment for the laparoscopy surgery, which happened to be within a week of receiving the call due to a cancellation. In just a matter of days, I made all the necessary arrangements both personally and professionally to ensure a smooth transition towards the end of this challenging journey. There were numerous preparations involved, but I am immensely thankful for the unwavering support system I have in my life – their presence means more to me than words can express. To anyone reading this, please know that I am genuinely grateful for the support I’ve received throughout this entire journey – thank you!

As the days turned into hours, my mind was filled with racing thoughts: “Do I want them to find anything?”, “What if they don’t find anything?”, “What if they do?”

When waking up from anesthesia, I was for a minute, totally clear, and asked “Did you find anything?”, and the nurse told me “Yes”. Then I relaxed and was moved into the monitored area until the anesthesia wore off and the surgent came to tell me the full results – super happy that they did, in fact, find something: explaining my pains, but more importantly, alleviate the issue and improving my life by removing the tissue. I was in fact, right all along! Furthermore, the discovery of inflamed tissue and a knot near my intestines provided an explanation as to why incorporating flaxseeds into my diet hadn’t resolved my bowel issues. A little too much information for most, but actually a topic we should discuss more as our gut health is so important: Since the surgery, I have experienced regular bowel movements and the ability to enjoy food without worrying about bloating or stomachaches, apart from the expected recovery time and managing my food allergies – which remains an ongoing journey.

So what’s next? While some doctors have recommended a hormonal IUD, I’ve decided to wait until I’ve fully recovered from the surgery – given other circumstances. Currently, I’m gradually being more active, returning to 100% work and slowly back to my workout routine – hopefully in the near future. Most importantly, I’m feeling better already and for the second time in my life, I’m actually looking forward to having my period to feel the change (you can probably guess the first 😉 ). On the other hand, I’ve received some difficult news regarding possibility of infertility and related issues, but I believe that there is a time for everything. Right now, my focus is on recovering. Considering all my allergies as well, my 3,5 and 10- years plans need significant adjustments. However, I’m taking it one day at a time.

All in all, though I have these two conditions, they are manageable and you can live a good life – the right remedies “just” needs to be there – starting with being heard and diagnosed.

Love & Light / CG

My debut book “A Poetry Collection of The Broken and The Divine” is out for sale on Amazon (paperback and e-book). Keep posted for my upcoming book launch event in the near future.

Endometriosis Awareness Month: Let’s Elevate Women’s Health

Endometriosis Awareness Month

Endowarrior is what we say,

But it doesn’t even begin to portray,

The many pains, frustrations, and disbelief,

From society and far wider than the school Dean. Yeah, back during gym sessions, class of strict teachers, and all those runs to the lo. “No more to the toilet for you”. Bleeding through tampons, pads, and jeans. We were just teens. So little empathy given for the young; “period pains are part of womanhood” came out from their tongue.

💛

So often we’re met with disbelief,

For apparently normality is what they all portray it and it seems.

But pains like these are far too much,

To be anything but normal as such.

Still doctors tells you no,

Even when you’ve done the research and almost know. A few tests and the right gyno could solve a lot, but then they lack knowledge of such.

💛

Cries, vomit, and unexplainable pain,

Will make any people go insane.

Far worse than pain itself,

Is the disbelieve in oneself.

Is all just in my head like they all ensured and said to me,

Or is the fault in lack of knowledge of thee?

💛

It’s time to wake up and fight,

Fight for a human right.

Right as a woman to be heard,

Not met with absurd.

Knowledge of doctors and society we must,

Let’s lift the problem and trust.

When someone has excruciating pain,

Don’t make them feel far from sane.

Hear their words and reassure,

Though they might lack the knowledge to find,

They will acknowledge you, and contact people who could figure out what’s “wrong with you”. Rather admit to the boundaries of knowledge, than just saying no.

Endometriosis awareness month, but let’s lift it to science of female health. Health is your greatest wealth after all, and I’m sure we’ll find it profitable for all. Investors, society and women around the world, knowledge must be power for sure. When one in ten females has the disease, I question how come we haven’t researched more and found a better cure? Painkillers, the pill, and operations are only useful for a while,

But there should be something more worthwhile.

Until then,

Fight your way through life,

For who says you can’t dance in life while still fighting a strife?

March is the #EndometriosisAwarenessMonth – join the conversation!

The aim is to increase awareness and highlight the symptoms of the condition that affects about one in ten women, with average of about 7 years to get diagnosed.1 The difference between endometriosis and adenomyosis is where the tissue grows, but the two are not mutually exclusive as adenomyosis is seen in 20-89% of women with endometriosis. Adenomyosis is when endometrial-like tissue grows into the muscle of the uterus, while endometriosis is when endometrial-like tissue grows outside the uterus (like on the ovaries, fallopian tubes)2.

My personal story

Last year I got very sick with a lot of different viruses and bacterial infections, resulting in severe constipation, vomiting, fainting, ER visits, and more. One part of the total package of examinations was testing for endometriosis and/or adenomyosis due to a gynecologist who had previously that year found tissue evidence supporting the diagnosis. Before this gynecologist, I’ve been to several different ones and GPs regarding my period pains and flood, but all previous healthcare professionals have turned down my inquiry for testing and been certain in their knowledge that I did not have either, or. Even the doctor who gave me coagulation pills as a teenager, nor the gyno whom I meet at 16 years old for pains. Teachers at my schools were harsh when I had to run to the toilet so much, even though my mother had given a note in advance… even when I was one of the few at secondary school who followed every lecture with a hawk’s eye and sharp pencils writing down every word….

One year ago, right after the first doctor who acknowledged me, I wrote the poem above. One year ago, I didn’t have the courage to publish it. After all last year, I grew, and this year, it’s out. This year I have the courage to stand by it and every word in it. This year, I’m taking a stand – we need to invest more in #womenhealth!

Resources

I’ve collected a few information resource links below, but please note that I’m not a doctor and to use critical thinking when searching the web. Moreover, please contact a doctor you trust or ask for a GP and/or a gynecologist with experience in the field if you resonate with the above and suspect it could be Endometriosis or Adenomyosis:

Videos for educational purposes found on Youtube:

• Endometriosis: Causes, Pathophysiology, Symptoms, Diagnosis & Treatment by JJ Medicine here. Short and to the point with info-graphics.

• Endometriosis – Overview (pathophysiology, differential diagnosis, investigations and treatment) by Armando Hasudungan here. Easy to follow drawing video, but a bit longer than the first video.

• Why Medicine Often Has Dangerous Side Effects for Women | Alyson McGregor | TED Talks here.

• What is endometriosis? A Mayo Clinic expert explains here.

• Nurse With Endometriosis Shares Painful Journey To Diagnosis | TODAY here. You’ll feel less alone with this one.

Websites

• Global Forum for news and information, endometriosis.org

Endometrioseforeningen (Norway)

• Legeforeningen (in Norwegian, but check the references for sources)

• Google Scholar search here

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References

  1. Endometriosis Awareness Month 2023. (n.d.). Awareness Days Events Calendar 2023. Retrieved February 16, 2023, from https://www.awarenessdays.com/awareness-days-calendar/endometriosis-awareness-month-2023/
  2. EMajak, B., G., Tellum, T., Ringen, M., I., Veddeng, A., Langeland, K., Alvirovic, J., Omtvedt, M., & Aas-Eng, K. (2021). Endometriose og adenomyose. Norsk gynekologisk forening. Retrieved February 15, 2023, from https://www.legeforeningen.no/foreningsledd/fagmed/norsk-gynekologisk-forening/veiledere/veileder-i-gynekologi/endometriose-og-adenomyose/

Love & Light / CG

My debut book “A Poetry Collection of The Broken and The Divine” is out for sale on Amazon (paperback and e-book). Keep posted for my upcoming book launch event in the near future.