Endometriosis Unveiled: A Patient's Tale for Medical Minds Part 2

In Part 1 of this series, we stepped through C's journey to diagnosis and the basic clinical foundations of endometriosis (if you haven't already, head over to our blog to read Part 1 before continuing). When deciding on questions to ask C, I asked myself 'what knowledge would be useful in future practice, outside of the scope of what we are taught in lectures?' I asked C to detail some of the treatments and alternative therapies that she has tried to help with the management of her endometriosis- who better to ask then someone who has tried it themselves! My hope is that by sharing her experience, someone who is also living with endometriosis may consider alternative options to manage their symptoms and for future clinicians to consider the range of treatment options available.*

The Mirena:

‘After seeing a gynaecologist for the first time, we decided that I would undergo surgery to have a Mirena inserted. Since getting the Mirena, I have experienced a drastic change in my symptoms and no longer get my period which was the cause of most symptoms.’- C

Clinical point: The Mirena is an intrauterine device (IUD) that words inside the uterus. It contains 52 mg of a single hormone called levonorgestrel, a type of progestogen. The Mirena continuously releases a low dose of levonorgestrel. It releases the hormone directly into the uterus, hence small volumes of the hormone enter the bloodstream. It is also a contraceptive device that acts to thicken cervical mucus, inhibiting sperm movement and thinning the lining of the uterus. When using the Mirena for the treatment of endometriosis, it has been shown to reduce the size of the lesions and an individual’s menstrual flow, which is when they most commonly experiencing symptoms.

TENS Unit:

C had first introduced me to the concept of a TENS unit at school and I remember her telling me she found it through a Facebook advertisement. I’ll allow her to explain to you how this incredible technology works!

‘A TENS unit is a small device that uses an electric current to activate nerves in an attempt to decrease pain. I personally use the brand ‘Ovira’ and have found the TENS unit to be super discrete as it goes under clothes and clips onto your waistband. It does an amazing job at decreasing my cramping whilst allowing me to continue with my day.’- C

Surgery:

C underwent laparoscopic surgery (keyhole surgery) to remove endometriosis tissue and assist in the management of her pain. Commonly, endometriosis will return post-surgery, as there is no available treatment to stop the cause.

*Please remember that the information detailed in this blog is not medical advice. You should discuss all of these options with your GP / registered healthcare provider.

Like many other medical students, I want to know what I can do to ensure that I am able to provide the best care possible to my future patients. I asked C to give some advice to future healthcare professionals when diagnosing, managing or treating endometriosis. The advice she gave was insightful and may seem simple to remember, however, I believe this advice can be applied to any patient of any age with any medical condition.

-       Focus on the person in front of you, rather than the literature.

As future healthcare professionals, it is important to remember that cases can happen outside of what we are taught and that symptoms can present themselves differently.

‘Most of the literature says that endometriosis is typically diagnosed between the ages of 15 and 44. However, I was 14.’ - C

-       Don’t rule out the diagnosis of endometriosis straight away.

‘Statistics show that endometriosis affects 1 in 9 Australian females. There are so many women and girls that go undiagnosed for years due to healthcare professionals not considering it as an option.’ – C

-       Never diminish someone’s symptoms or the level of pain they are experiencing

‘Take what [your patients] say at face value and treat them for the level they say their pain is. Most of us are not fabricating how we are feeling, and this condition can greatly impact our daily lives.’ – C

If you made it this far- thank you for coming along on this journey with us today!

Thank you C for your willingness to share your story and entrusting me to do so.

C's story sheds light on the impact of endometriosis on daily life and the crucial role empathetic care plays in managing this complex condition. From the variable symptoms to the array of treatments and alternative therapies, it is evident that a one-size-fits-all approach is inadequate for addressing the diverse needs of those with endometriosis.

By sharing these personal narratives and clinical insights, both C and I hope to contribute to continuing changing the narrative surrounding endometriosis, fostering understanding, and inspiring further research and advocacy. It is our collective responsibility to bridge the gap between medical knowledge and empathetic care, paving the way for a future where endometriosis is diagnosed earlier, managed more effectively, and met with greater compassion.

And I’ll leave you with this quote from C…

‘As future healthcare professionals, you have the power to change someone’s life with a diagnosis.’ - C