Michelle's Endo Surgery Journey: Help Her Heal!

Hello everyone,

My name is Marin, and I'm reaching out to you on behalf of my incredible sister, Michelle. Michelle is not just my sister; she's my rock, my confidante, and one of the strongest women I know. But right now, she's facing a season in her life that tests her strength like never before.

For years, Michelle has been battling against the relentless grip of endometriosis. This condition has forced her to endure excruciating pain and discomfort, disrupting her life in countless ways. Despite the challenges, Michelle has faced it all with unwavering determination and courage.

Michelle is the epitome of a helper, both in her career as an adolescent mental health counselor and as a go-to support within her friend and family networks. She is often the one taking care of others and (to a fault) struggles with asking for or receiving help.

So right now, I am asking for her.

She has met with surgeons in Hawaii, California, and Washington. Most have been Ob-Gyn surgical specialists, and some have been Gyn-Oncologists (who specialize in cancer, but she was referred to because they have the surgical skill for complex procedures). None have been willing to take her case. She was referred by an in-network specialist to see an out-of-network surgeon in Portland, Oregon. He has focused his entire career on severe cases of endometriosis and is willing to do the surgery yet notes that he only sees cases this severe about once per year. Despite numerous letters of support from in-network specialists, insurance has not agreed to cover the out-of-network surgeon or recognize the gap in care. As of this writing, she is entering into this surgery with an immense financial burden (upwards of tens of thousands of dollars) due to balance billing, the need to obtain care outside of her resident state, and insurance with no out of pocket maximum limit when seen by an out of network provider.

What is not rare is that one in ten women are diagnosed with endometriosis, but on average face a 7–10-year delay in diagnosis. In addition to the medical system grossly neglecting women’s health and viewing horrific pain as acceptable, it is set up in a way that makes care unattainable and unaffordable for many and puts women in the hands of surgeons who do not have the skills specific to endometriosis identification to completely excise the full disease- leaving it behind and therefore significantly increasing recurrence rates (the need for multiple surgeries). This is not to say that surgeons are not skilled, but that when the disease enters state IV it can be more difficult to operate on than cancer due to the many colors it presents and locations throughout the body that aren’t limited to reproductive organs.

We know that Michelle expects nothing, yet would be grateful for anything, which is why the ask does not reflect actual cost of procedure. We also know that she has every intention of continuing to advocate for herself and all women out there who have had their pain ignored or fallen victim to ineffective “treatments” because of outdated research and underfunded surgical training programs. She has already submitted research articles and data to the WA State Health Commissioner and WA Health Alliance.

Please help us to alleviate some of the financial hardship so that her road to recovery and restored health can be met with less worry. We firmly believe in the power of prayer and ask that all who are willing will lift her up on March 1st and during the hospitalization days to follow.

If you prefer to write a direct note of encouragement and/or support her directly, her Venmo is: @Michelle-Lorne (wearing black Aloha hat).

Below is a more detailed description of her condition in a letter from her surgeon to insurance:

“Our practice is hyper specialized in complex endometriosis surgery, including disease of the bowel, bladder, and upper abdomen / thoracic. Ms. Lorne has a truly severe case of endometriosis that involves the uterus, deep pelvic infiltration, deep disease into the wall of the rectum, and disease invasive into the wall of the bladder. We expect that this surgery will require a hysterectomy, extensive resection of endometriosis and ureterolysis, a low anterior resection of the colon with reanastamosis, and a partial bladder wall resection with sutured repair. It may require some kind of ureteral surgery as well. This surgery would involve my entire multidisciplinary team of myself (endometriosis specialist gyn surgeon) as well as a colorectal surgeon and likely urologist. I suspect the surgery to be 8-10 hours in length. This type of case is rare, and there are all kinds of ways it could go wrong. I do things like this with regularity, including bowel resection type cases almost every week. It is critical that Ms. Lorne have a surgical team that has the level of experience that is found in my practice, and really nowhere else in the region.”

On the other side of recovery, she would be more than willing to talk or share information with anyone who may be going through a similar experience. She recognizes how isolating, deflating, and exhausting it can be to live with and navigate an invisible illness

For additional information on Endometriosis:

Documentary: Below the Belt

IG: @endometriosis_surgeon

IG: @endometriosissummit

IG: @endogirlsblog