ENDOSTRONG Patient of the Week: A Psychologist Who Was Told She Was Crazy

Mandy Smeetz-Klumpkens is a 28-year-old psychologist and endometriosis patient living in Holland. Mandy just joined our team to write articles not only from a psychologist’s perspective but also from a patient’s perspective. She is this week’s endostrong patient. Here is her story!

Diagnosis: crazy

For many years Mandy suffered what she called, “killer cramps” and extreme blood loss during menstruation. No one could explain what was wrong with her and one doctor dismissed her as just being “crazy.” At age 24, Mandy was in really bad physical shape. She was peeing blood, had recurrent urinary tract infections, and was constantly vomiting and feeling nauseous. She knew something was very wrong.

From one doctor to the other

One of Mandy’s doctors was sure that she had appendicitis. When an MRI showed nothing abnormal, that doctor sent her home without any answers. Mandy was determined to find out what was wrong with her and finally found a gynecologist who diagnosed her with endometriosis in 2009. Mandy has had six operations since. 

What the diagnosis meant to her and her marriage

Mandy spent a long time, like many other endometriosis patients, being shuffled from doctor to doctor not getting any answers as to why she felt as bad as she did. No one took her disease seriously. Her friends accepted her illnesses at first, but then the multitude of symptoms and the vague explanations of why she was feeling the way that she was taking a toll on how they looked at her as a person.

Mandy would keep trying to fight the symptoms and live a normal life until she would just collapse from exhaustion. Deep down she knew something was wrong. She knew that what she was experiencing was not normal. Her diagnosis brought great relief to her and her husband. All of a sudden there was a better understanding of what Mandy had and why she was feeling the way she was feeling. Her husband, who was supportive before, became even more supportive after being able to read up on the disease to better understand what she was going through and how he could help her.

Endometriosis and IVF

Like many women with endometriosis, Mandy’s only hope to be able to conceive was through IVF. Mandy had a tough time with the synthetic hormones that her doctor prescribed during stimulation. She felt the medications made her hormones go crazy and left her even more exhausted and very agitated. Luckily she was able to get pregnant with twins. They were born two months premature but are now healthy after spending some time in the NICU. The doctor who performed Mandy’s C-section did not listen to Mandy when she warned him that her endometriosis had displaced some of her organs. Incidentally, the doctor had cut Mandy’s bladder in half while delivering her twins. 

Mandy’s future

Currently, Mandy is experiencing a lot of pain, especially leg pain and nausea. Balancing work and taking care of her twins is exhausting for her. She feels that she is working with very limited endometriosis resources in Holland. Her plan is to see Dr. Seckin this winter. She has a lot of hope that he can help her with her deep infiltrated endometriosis. She continues to hope that a life without constant pain is possible.

Words of wisdom

Mandy wanted to share her story to let other women know that they are not alone with this terrible disease. She encourages women to reach out through the internet and speak to others who have endometriosis to get support and understanding. She thinks it is important to utilize organizations like the Endometriosis Foundation of America and the Dutch Endometriosis Foundation, where she is an ambassador, to gain up-to-date information about the disease and help spread awareness. Mandy also stresses that going for a second opinion (or third or fourth opinion in Mandy’s case) is crucial, even if it takes you all the way to New York City!