Hey, I’m Eric, and my partner of 16 years (Stephanie) is undergoing a big surgery in January 2025.
If you know Stephanie, you know she’s not one to ask for things. She tends to be the one always advising, helping, supporting, and taking care of others.
She says it’s an eldest-child thing. And a Taurus thing. I don't know about all of that - but I do know it’s hard for her to ask for help. So I want to let her know through this fundraiser that she is supported and loved. This diagnosis (even though it was a long time coming) and the upcoming surgery, have shaken her to the core, and she needs some very tangible support.
THE BACK STORY
Stephanie has had "bad periods" since her very first one, at the age of 13. Her symptoms were varied and happened every single month. For years doctors told her "That's just how it is to be a woman", or "Just take some Advil and you'll be fine". So she did. For many, many years.
She’s told me countless stories about times when her pain and discomfort got in the way of enjoying life. It ruined her high-school prom, clouded most of her college days, and had her doubled over in the bathroom on many occasions in a variety of work settings. If you're not familiar with endo - here are just a small sampling of symptoms Stephanie and countless others experience...
- Painful periods
- Excessive bleeding during periods
- Chronic pelvic pain
- Low back/hip pain
- Debilitating fatigue
- Infertility
- Abdominal bloating
- Digestive issues
- Nausea
- Dizziness
- Painful bowel movements
- Chronic UTI's
- Constipation/IBS
- Ovarian cysts
- Painful sex
- Migraines
- Wide range of allergies/allergic diseases
- Joint pain
- Sciatic pain
- Neuropathy
- Depression and/or anxiety
I literally have no idea know how she's handled all of that, but she has and kept it a secret from just about everyone. She says she always thought her body was just broken - that it's just how she was made. 😔
In 2016 after countless doctor visits, "holistic" therapies, supplements, and tens of thousands of dollars spent trying to feel better - a primary care doctor in California suggested she get another ultrasound when we moved to NYC in a few months. So we did just that. And it revealed likely bilateral endometriomas on each ovary (6cm and 8cm at that time). You can read more about endometriomas here, but essentially it was a strong indication that she had advanced stage endometriosis.
We sought the advice of two OB-GYN's but Stephanie wasn't happy with the advice she was getting from either of them. So she monitored with annual ultrasounds and waited. And of course, in typical Stephanie fashion 😛 did LOTS of research and learned more about the condition, treatment options, the best surgeons in the U.S., patient stories, current research on the disease, etc.
While the diagnosis took far too long, one positive of getting a later-in-life diagnosis (if there is one) is that she has made some great connections within the endo community. They have been SO generous with their knowledge and experiences. This isn’t something that existed 10-15 years ago, so in some ways, the timing was great.
TODAY
As some of you might know, Stephanie and I opened a wine bar in Greenpoint, Brooklyn, NY in 2019 which took all of our time, energy, and resources. It meant brutally long hours and a lot of stress. Stephanie likes to say it also gave her a good excuse to not have to face her greatest fear – having a major surgery.
The wine bar took so much out of us both - and I think contributed to the advancement of her disease. Ever since COVID, Stephanie’s anxiety has ramped up a lot – generalized anxiety but also health and medical anxiety (something she’s dealt with for years). She also went into menopause (on the early side), likely due to endometriosis. The one part of endo she isn’t mad about. 🙂
Because of Steph’s complex health issues as well as due to the devastation that COVID-19 did to our business, we closed the wine bar in late 2023. It's been heartbreaking, but was also for the best. We knew we couldn't continue on the way we were.
The financial fallout from the wine bar closing meant that we couldn’t afford to stay in Brooklyn anymore, and would have to declare bankruptcy so we packed up everything and with our dog Yuri in tow, we moved to St. Louis, Missouri to live with Stephanie’s parents. You know what’s humbling? Moving in with parents in mid-life. 🙃 But we’re grateful, and it’s given us some much-needed space to breathe and recover.
Another upside is that Stephanie of course tracked down one of the best endo surgeons in the country, who happens to have just opened a new center for endometriosis here in St. Louis (one of only a handful in the country).
After meeting with Dr. Patrick Yeung at Restore Center for Endometriosis, we both agreed he was the guy for the job. So we booked the surgery for January 2025, and are in the process of getting all of her medical needs in order.
THE SURGERY
To give you an idea of what this surgery will involve – because Stephanie was diagnosed so late (the average age of diagnosis is around 28, she was diagnosed at almost 40) she certainly has advanced disease (known as deep infiltrating Stage 4 Endometriosis). This means there is likely endo tissue growing outside the uterus, in other areas of the body (which is normal with this chronic, incurable disease).
We won’t know the extent of the disease until after the surgery, but based on symptoms and a recent ultrasound and pelvic exam, the plan is to excise the disease from throughout her pelvic cavity (including the two cysts/endometriomas), her bowel, and bladder. She will be getting a complete hysterectomy and appendectomy (removal of the appendix) and possibly, a bowel resection. This could be a 6 to 8-hour surgery depending on complexity and she will be in the hospital for 1 to 7 days, again depending on complexity.
Because of her fear of surgery, Stephanie’s biggest goal for this is to have a “one and done” surgery, so she doesn’t have to do this again. Dr. Yeung specializes in that and believes it’s possible.
Needless to say – it’s not a small operation. And it is going to take quite a bit of patience and time to recover. We anticipate she will not be working for a minimum of 6 weeks, so she can fully focus on healing.
THE ASK
And that's where Stephanie (and I) could use your support and love. 🙏🏼
We have picked a surgeon who we both feel very confident about. Now, we just need to make sure we have the resources to get Stephanie the help she needs.
Dr. Yeung’s surgical fees are not covered by her insurance, as he is an out-of-pocket provider. Thankfully, the hospital, anesthesiologist, and bowel surgeon are in-network.
These are the costs that we foresee as of today:
- Surgeon Fees including all pre/post-op care: $12,000 - $15,000 (depending on complexity of surgery)
- Hospital Bills for Surgery: $0 (could be a charge depending on length of stay)
- Pre/Post-op Physical Therapy and Pelvic Floor Therapy: $2000 (not fully covered by insurance)
- Mental Health Support: $1500 (6-months total pre/post-surgery - not fully covered by insurance)
- Endo dietician/nutritionist: $1000 (6-months of nutrition support pre/post surgery - not covered by insurance)
- Additional costs may come up depending on complications and her recovery needs
Total out-of-pocket costs will be approximately $18,000
**If you'd rather buy her something physical, feel free to send something from her Amazon Wish List.
If Stephanie has touched you and your life in some way, and you have the resources to spare, would you consider supporting her? As her partner, it’s so hard to watch her go through all of this and not be able to fix it for her. I want her to have the resources to feel truly supported so that she can just focus on healing.
We have the love and support of family here in St. Louis (and a roof over our heads) which cannot be measured, but with the healthcare system in the U.S., the costs are just too much to bear. Much of these costs are incurred up-front (before surgery), so I'm trying to get her set up so that she doesn't have to stress and can focus on preparing herself mentally for the procedure.
Thank you from the bottom of our hearts for your support. We feel so incredibly grateful to have such an incredible community that has cheered us on, lifted us up, and supported us over the years. It truly does take a village. We’re grateful, you’re ours.
Much love,
Eric (and Stephanie + Yuri)
