My Endometriosis Surgery Cost $60,000: How I Paid for This Crucial Treatment

Fact checked by Nick Blackmer

Meet the Author

Olivia Walters is a writer and French tutor living with endometriosis and painful bladder syndrome. She calls the Carolinas home.

My journey to an endometriosis diagnosis was like so many other people’s. The average length of time it takes a person to be diagnosed is 10 years, and I was no different.

My diagnosis did not immediately lead to the best treatment. It took lots of ups and downs, which led to the diagnosis of other chronic conditions, taught me how to advocate for myself, and helped me find support from other people with endometriosis.

Read on to hear about my experience with endometriosis surgeries (including how I paid for them) and the lifestyle changes I made.

"The average length of time it takes a person to be diagnosed with endometriosis is 10 years, and I was no different."

My First Surgery (and Diagnosis)

My first surgery is actually how I officially received my endometriosis diagnosis. After years of misdiagnoses and being put on antibiotics for suspected urinary tract infections (UTIs), I eventually saw a new ob-gyn (obstetrician-gynecologist) who listened to my symptoms. They performed an exploratory laparoscopy, which is used to both diagnose and treat endometriosis.

This procedure showed that I had stage 1 endometriosis and was treated through excision (cutting out and removing lesions) and fulguration (also called ablation, burning away lesions). I was excited to have a diagnosis finally, but my symptoms, unfortunately, did not improve. The symptoms that persisted, included:

• Chronic constipation

• Frequent urination

• Painful sex

Seven months after my first surgery, I sought out an endometriosis specialist. This specialist diagnosed me with stage 2 endometriosis, interstitial cystitis, polycystic ovary syndrome (PCOS), and pelvic floor dysfunction.

Another surgery was on the horizon.

My Second Surgery (and Lifestyle Tweaks)

My endometriosis specialist performed a second laparoscopic surgery. This time, the doctor removed all of the endometriosis tissue, the adhesions near my uterus and bowels, my appendix—since it had been scarred down by endometriosis tissue—and all of the lesions left from the first surgery.

I stayed in the hospital overnight, and my surgeon asked me to stay another 72 hours in a nearby hotel in case of complications. Post-op, I dealt with referred back pain that burned and made it hard to stand up. My bladder felt like a match had been lit inside of it.

I did pelvic floor physical therapy post-op to help the healing process. It took five months post-op to get the pain to a baseline, which is, to say, manageable. I was also seeing a urologist to manage my interstitial cystitis and was now back on birth control to manage my period cycles. 

I found other treatments to help manage my symptoms, they included:

• Eating an anti-inflammatory diet

• Practicing yoga

• Getting lots of sleep

• Staying on my antidepressants and antianxiety medications

If you end up needing surgery for your endometriosis, I recommend speaking with your healthcare provider before the procedure. Ask them how many endometriosis surgeries they have performed and how many endometriosis patients they see. If I had seen a qualified specialist from the beginning, I wonder if I would have only needed one surgery.

Related: Scar Tissue Massage and Management

How I Paid for My Surgeries

Having a chronic health condition took its toll on me physically, emotionally, and also financially. The pain made it difficult to work even part-time, and I was living below the poverty line.

Takeaway

My second endometriosis surgery was $60,000.

Through this hardship, I was able to work with my doctors and hospitals to find financial assistance for my medical bills.

To prove that you qualify for financial assistance, you need to be prepared to fill out a lot of paperwork and verify medical necessity. My endometriosis specialist was an out-of-network provider. However, because I lived more than 50 miles away, I was able to go through an appeals process with the insurance company to get my second surgery with the specialist covered.

Always ask your doctors about any financial assistance they may have for qualifying patients.

It will be a lot of work to gather all the information and fill out all the paperwork, but it can significantly reduce the cost of medical bills.

My Support System

Endometriosis is a difficult condition to diagnose, and the path through diagnosis and treatment is not easy. Finding a support group can be lifesaving.

I suggest joining a support group to learn about your local resources and allow yourself to share your own experiences with those who understand.

I found support online through complete strangers who understood what I was going through. They were advocates who had more information than my ob-gyn. They helped me feel less alone and to realize this was not all in my head.

This support group understood how horrible it was when the local ob-gyn and nurses told me false information, like pregnancy would improve my symptoms.

I no longer had to cry, yell, and beg to feel heard during my diagnosis.

"Endometriosis is a difficult condition to diagnose and the path through diagnosis and treatment is not easy. Finding a support group can absolutely be lifesaving."

The Unexpected Outcomes

There have been both good and bad outcomes from my endometriosis diagnosis.

One of the tough things that has come out of my diagnosis is that I now know that I have chronic conditions that currently have no cure. I have bad days, when the fatigue is constant. I worry about my job.

On the flip side, I have learned to trust my gut, both literally and figuratively. I had to push to get doctors to take my symptoms seriously and get the treatment I needed. After so many years of dealing with endometriosis symptoms and being at odds with my body, when I was finally diagnosed, the validation gave me a huge sense of relief. It helped me realize that I need to trust myself and advocate for my needs.

As told to Patty Weasler, RN, BSN

Read the original article on Verywell Health.