The insidious condition can go completely undetected for decades
Whether you have it or not, there’s a good chance you’ve heard of endometriosis.
The debilitating yet widely misunderstood condition has received a lot more press in recent months and years as women have finally spoken out about how it has affected their lives and the criminally long time it can take to receive a diagnosis.
In the latest edition of Irish Country Magazine, we launched a new series: The Invisible Struggle, which will shine a light on the overlooked health conditions women face in each issue. In our first instalment, Niamh Devereux interviewed three women about endometriosis – on the chronic pain they deal with, as well as their deep frustration with the lack of care in Ireland for the disease, despite an estimated 155,000 Irish women suffering from it.
To understand the silent version of the condition, you must first understand the condition itself.
What is endometriosis?
Endometriosis occurs when tissue similar to the lining of the womb grows outside the womb, either in the pelvic area, peritoneum, ovaries, bowel or bladder, and in some rare cases in other sites of the body. This can cause unbearable pain, scar tissue and adhesion formation. In some cases, it causes infertility.
Symptoms range from pain in the pelvic and abdominal area, dysmenorrhea (pain associated with periods), heavy menstrual bleeding, pain during or after sex and pain during or after bowel movements or urination.
What is silent endometriosis?
Silent endometriosis charts the exact same trajectory of scar tissue forming around the reproductive organs but there’s a twist – people don’t experience any of the usual painful symptoms. And as a result, healthcare professionals don’t think to check for it.
If it doesn’t cause pain, is it really that big of a problem?
Yes. Unfortunately, many women only discover that they have silent endometriosis after they have been trying to conceive for over a year. By then, the chronic inflammatory disease may have spread and caused more damage than it would have if caught years before. It can also result in a lot of heartache and costly procedures for those who are told that there is “nothing wrong” with them or that they should have no trouble becoming pregnant with assisted fertility treatments.
Are there any signs of silent endometriosis I can look out for?
Lora Liu, MD, an endometriosis specialist in New York City, says there are three particular signs to look out for:
- An altered immune system – Endometriosis can cause inflammatory reactions in the pelvis which in turn has a damaging effect on the ovaries or follicles. It can also have a huge impact on whether or not an embryo can survive or thrive within in the body.
- Chocolate cyst – This is a tar-coloured cyst, also known as an endometrioma, filled with dark menstrual blood and tissue. It can be toxic to the ovaries and reduce the number of good quality eggs.
- Low ovarian reserve – This refers to a diminished quantity and quality of eggs and is often a sign of endometriosis in the body.
How exactly does silent endometriosis affect fertility?
In a post on her Instagram page earlier this year, Jessica Bourke aka. The Fertility Detective shared the shocking statistic that almost 50% of those trying to conceive are found to have endometriosis and up to 25% of diagnosed endometriosis cases are asymptomatic.
Here are some of the red flags that she says could be masking silent endometriosis in your system:
- You’ve been trying to conceive for over a year and have been diagnosed as ‘unexplained’.
- You have a history of auto-immune disease yourself, or in close family members.
- You have suffered recurrent pregnancy loss.
- You have been through multiple IVF cycles and can’t seem to get good quality embryos.
How is silent endometriosis diagnosed?
If the person or people involved are otherwise healthy and have done all the requisite tests to rule out any issues pertaining to female or male factor infertility, an exploratory laparoscopy may be recommended.
A laparoscopy (key hole surgery under anaesthetic) is the only definitive way to diagnose whether a person has endometriosis. It is performed by cutting out the lesions of scar tissue and sending them to a laboratory for confirmation.
Can silent endometriosis return?
Yes. Many women go on to conceive naturally or through IVF once the endometriosis has been removed via surgery. During pregnancy, the lining of the uterus is not shed, and as a result, the lesions tend to shrink throughout the pregnancy and hopefully cause fewer problems after delivery. However, in a small number of cases, endometriosis can grow back causing similar problems.
Click here for more information on this condition
We are running this series as we want women to know they are not alone in their suffering. Join the conversation on social media using the hashtag #TheInvisibleStruggle