Is endometriosis all in your head?

By Robert Albee Jr MD

In this opinion piece I wish to address the psychological impact of undiagnosed endometriosis on young women.

Dr Robert Albee, Center for Endometriosis Care

When endometriosis is discussed amongst healthcare professionals, one of the most consistently overlooked related problems is the psychological impact of the disease on younger patients (particularly teenagers).

It is true in my experience that all of humanity is generally compassionate towards young people with disease or injury; yet, this is not true of many of the young women who are disabled by pain from endometriosis.

The harsh reality is that unless they have a parent or a healthcare professional who believes in them and stays on course determined to understand the reason for the pain, these young women often face dramatic changes in their lives once the symptoms of endometriosis become severe.

Why is there a diagnostic delay in endometriosis?

Before I describe the natural results of the failure to diagnosis the disease on these young lives, I would like to briefly examine the reasons that endometriosis is often not diagnosed for 7-10 years.

Endometriosis often creates a multitude of differing symptoms, and every patient has her own unique combination of these symptoms.  Although there is a sub-group of women who have no pain despite severe disease, the group I am focusing on has severe and even incapacitating symptoms that may arise from what would surgically be referred to as “mild disease”.

These symptoms often change a carefree, enthusiastic, happy young girl into a fearful one whose self esteem seems to get lower and lower with each passing month. Parents regularly say: She is not the same happy-go-lucky girl that we have always known. We don’t know what has happened to her.

Here are my observations regarding what – in fact – has happened to her

First and foremost, this young woman is now having to cope with disabling symptoms, and no one is providing her with any understanding as to why.

Furthermore: no one offers her any hope for a return to her former life.

Some become stigmatized as girls who simply can not ‘handle’ a menstrual period, as described well in Karen Ballard’s paper from 2006.  Often because tampons hurt, she is embarrassed because she can not use them for activities like swimming, etc.

Trips to the school nurse and pediatrician begin to add up. When no help arises, hope is dimmed further.

Missed days from school also add up until scholastic challenges grow and friendships become harder to maintain.

As a result, many of these young women end up discontinuing sports that they have enjoyed because the activity only accentuates their pain.

The frustrating journey towards a diagnosis and treatment for endometriosis

Further trips to doctors may result in presumptive therapies that down-regulate the normal production of hormones. Many times there are significant side effects of the medications that force her to choose between her pain and the side effects of a medication which may or may not help the symptoms – and for sure will not eradicate her underlying disease.

Somewhere along this journey, a careless doctor or healthcare provider will suggest that ‘it is all in her head’.  Over time many will begin asking themselves whether or not they are somehow making this up. Sadly, parents do not know what to think and may begin doubting their daughters as well.

Facing the local emergency room

Lastly, she will probably eventually be forced to meet the local emergency room healthcare providers because of an episode of severe pain.

Healthcare providers in emergency rooms are liable if they do not rule out everything from appendicitis to pregnancy to sexually transmitted diseases.

This means that our young patient will be forced to have an examination, pregnancy tests, cultures, blood work, and usually an ultrasound or CT scan. When all is done and no answers are provided except that she has none of the above, she leaves the ER with her head held low and some pain medication. Worse than that, she feels physically violated by the experience.

For the patient, it is not a lot different from being physically assaulted anywhere else.

My experience with young women with endometriosis

I often see the patient who can not even believe me when I offer hope. Some are suicidal, some are angry, and some have just given in to using pain meds and trying to survive.

I write this article as a plea to our profession and the healthcare industry to improve the early diagnosis of endometriosis.

Most of that effort is really just a specified focus on education.

I believe that it must begin at the level of our educational institutions:

• our medical schools;
• gynaecological, pediatric and family practice residency programmes;
• our nursing schools.

Early diagnosis and intervention can preserve quality of life and reduce disease morbidity, infertility, and progressive symptomatology.

Most of all: please believe our young women when they say they are in pain!

See also

→ Diagnosis of endometriosis
→ Treatment for endometriosis
→ Why the diagnostic delay?
→ Teenagers and endometriosis
→ Myths and misconceptions about endometriosis 

The author

Robert B Albee Jr, MD FACOG ACGE, founded the Center for Endometriosis Care in 1990 and has given his professional time to the treatment of patients with endometriosis almost exclusively ever since. Dr Albee has surgically treated the disease through meticulous Laparoendoscopic Excision (LAPEX) in over 2,500 patients. His passion is to see endometriosis better understood amongst his peers and see it consistently treated in a manner that can return the highest percentage of patients back to an acceptable quality of life. The Center for Endometriosis Care and Dr Albee have earned the COEMIG designation.