Living with Endometriosis: How to Find the Right Doctor

Author Samantha Bowick shares her experience finding the right specialist for endometriosis treatment through an excerpt from her upcoming book.

 

More than 176 million women worldwide struggle with endometriosis, a condition that causes chronic pelvic pain and affects every aspect of functional life. Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options by Samantha Bowick tells the story of one woman who has suffered from the disease for years. Being released in late April 2018, the book features expert advice from doctors and researchers studying the disease, along with ways to recognize symptoms and obtain the most effective help.

Following is an advance excerpt* from the book’s chapter on finding the right types of doctors for endometriosis treatment.

“Nobody wants to talk about female problems, but not talking about them does nothing to help anyone—and that is where I draw the line. I am going to share every aspect of my journey—the good, the bad, and the ugly—in the hopes that it will help you live a healthier life sooner, rather than later. Hopefully, my story will inspire you to seek the help that you need to live the healthy, pain-free life you so deserve. Remember: it is not your fault you are in pain; it is not anyone’s fault. While it may be hard to find a doctor out there who really cares and who knows what they are talking about, just keep fighting, because they are out there.”

What Doctors Do I Need?

There are several types of doctors that are beneficial in receiving the best healthcare possible. In my personal health journey, I’ve found it valuable to consult with endometriosis specialists, family practitioners/internists, gynecologists, gastroenterologists, urologists, endocrinologists, rheumatologists, pulmonologists, and cardiologists, as well as a pelvic floor physical therapist, counselor, and pain management doctor. Quite a laundry list, but endometriosis has been found to have comorbidities, which means that there are other diseases associated with women who have endometriosis.

That’s why it is important to know what each of these doctors practice to know if you might benefit from seeing any of them.

Endometriosis Specialist

When suffering with endometriosis, one of the best things a patient can do is to seek out an endometriosis specialist. This is a medical doctor who knows the ins and outs of the disease and specializes in its treatments. They usually do not use birth controls, Lupron, or other medications; instead, they use the approach of excising the disease, getting rid of the culprit in hopes of the patient living a pain-free life.

They may perform an ultrasound to determine how the uterus and ovaries look and to come up with a plan to treat the disease. Surgeons utilizing excision in their treatment plans report rates of long-term relief in 75–85 percent of their patients, while non-excisional surgery reports a 40–60 percent recurrence rate in as little as one to two years post-surgery.

Samantha’s Experience

In my experience, excision surgery has proved to be the most beneficial method for decreasing my endometriosis pain. I still have concerns about the disease coming back, because it seems like it has always reared its ugly head at the most unexpected times in my life. Since having excision surgery by an endometriosis specialist, I have had one surgery to remove my gallbladder and scar tissue, and have gone a year and a half without any surgery for endometriosis concerns.

Family Practitioners/Internists

These doctors are beneficial for doing lab work and testing for some gastrointestinal-related issues, and can help to rule out other illnesses as well as refer patients to specialists, depending on the issue.

Samantha’s Experience

The family practitioners I’ve seen ended up being the ones who found that I am vitamin D deficient, performed the bone scan that diagnosed me with osteoporosis, and referred me to a gastroenterologist, endocrinologist, and rheumatologist when they suspected that something else could be going on. Insurance sometimes requires these doctors to refer patients to specialists before they can cover any appointments, which can be frustrating for the patient. My doctor also likes to do blood work every six months to one year as a follow-up, which I appreciate.

Gynecologists

Gynecologists are usually the first doctors that women go to see to get birth control, oftentimes before they suspect there could be something wrong. Gynecologists specialize in women’s reproductive organs; this is where women will have their yearly pap smears, mammograms, and bone density tests done. They may do ultrasounds, blood work, and saliva testing, as well.

Samantha’s Experience

Even though gynecologists should specialize in women’s diseases, it has been hard for me to find one that does over the course of dealing with endometriosis. I feel like they only want to throw birth controls or Lupron at patients in hopes of treating the disease without having to try excision surgery or refer women to an endometriosis specialist. It was difficult for me to find a gynecologist who would also treat me for PCOS, even though the illness deals with the ovaries. This was because I do not fit the appearance of a “typical” PCOS patient.

Endocrinologist

Endocrinologists specialize in the endocrine system, which includes hormonal imbalances and some cancers. Polycystic Ovary Syndrome (PCOS), osteoporosis, and infertility are some of the comorbidities associated with endometriosis that endocrinologists treat. They may do blood work, saliva testing, bone scans, and surgery, depending on the disease they are testing for, and will determine the best course of action if you have one of these diseases.

Samantha’s Experience

In 2012, before I had my hysterectomy, I called an endocrinologist’s office to see if I could make an appointment to see if I had PCOS. After I told them my medical history, for some reason they said they couldn’t see me. I started seeing one in 2015, when my family doctor referred me to one after she ordered a bone scan and my T-score was in the range of osteoporosis. I discuss my experience with osteoporosis and PCOS in subsequent chapters.

Pelvic Floor Physical Therapist

As described in Chapter 5, pelvic floor physical therapy is one alternative medicine approach that can be beneficial for those suffering with pelvic floor spasms due to endometriosis. It is important that we feel comfortable with a pelvic floor physical therapist, as these appointments can be extremely uncomfortable depending on the method being used. A gynecologist or an endometriosis specialist can refer you to a pelvic floor physical therapist in your area. They are not as common as other physical therapists, so you may have to travel depending on where you are located, but it can be worth it.

Counselor/Therapist

It is important to have a counselor, a therapist, and/or a psychiatrist to talk to about the emotions you’re experiencing due to your endometriosis. It can be helpful to talk to someone who is not part of your family and gives you time for relaxation and to try different techniques that can be beneficial for relieving stress. It’s also valuable to have an outlet for your feelings that won’t affect anyone else. Some of these medical professionals do not prescribe medication, but can refer you to a physician who does if that is something you both agree you need. It can take up time and money depending on what your insurance will cover, but in my opinion, it is well worth it.

This book is available wherever books are sold, but readers can most easily obtain it from Amazon. Living With Endometriosis is published by Hatherleigh Press and distributed by Penguin Random House.

*Excerpt printed with permission from the publisher.

Updated on: 06/14/18
Continue Reading:
Exams and Test to Diagnose Pelvic Pain
SHOW MAIN MENU
SHOW SUB MENU