Heather Willey Surgery Fund

END-ometeriosis. Where there's a Willey there's a way.

I met Heather when I fell over in my desk in Mr. Anzivino's music class in seventh grade at King Philip Middle School, the artist formerly known as KP North. She liked that I laughed uncontrollably with my stupid brown loafers on. I was too embarassed to cast a silhouette on the overhead projector screen - all the seventh graders took turns transcribing the lyrics to a song to share w class and brought in their corresponding cassette tape. I had dropped my pencil into the aisle and if I could just reach a little further without having to walk around . . .

Heather and I proceeded to have pretty much identical class schedules for the remainder of our jr. and sr. high school experience. My dad loved how hard he could hear me laughing when I talked to her on my little tiny pink Benny's phone that was plugged into the wall in my room. We quickly became best friends, along with another gaggle of girls. When I got my license I drove my family's "Diesel Battlewagon" Chevy Beauville van w/ eight seatbelts, tinted back windows, and a stick shift next to the driver's side aprroximately 2 feet tall. While most friend groups are limited to the five seatbelts in a normal car, I was the driver of the "van-o-chicks." We had an endless string of sleepovers and Heather and I got the same Chancellor's award scholarship to Umass Amherst (the top 2 students didn't want it and Heather and I were 3 and 4 in our class at the time). So with free tuition, we embarked on becoming college roommates and housemates from 1997-2001. She was one of my bridesmaids, even though she was pregnant with her daughter, Zea, at the time. We were both pregnant with our sons, Graham and Arlo, at the same time. We've grown up together, but Heather's health problems have taken a terrible toll on the quality of her life for the past ten years.

Here's Heather's story:

There are not many words that I can find. There are very few times when I am at a loss for words. It is also extremely difficult for me to ask for help. I usually save it for the emergencies in life. I guess it is one of those times.

I have struggled with endometriosis pain for all of my adult life. While the words are hard to find that allow for me to describe the physical distress, emotional turmoil, and trauma that has particularly characterized its treatment and the last 9 years of my life, I will try to give you a brief picture of the disease that has made my life disastrous and at times unbearable.

Endometriosis is a progressive disease marked by endometrial tissue growing in places where it should not- causing the nervous system to go haywire. It can grow anywhere within the pelvis and it is now known that it can also reach places and grow on organs outside of the pelvic cavity (it doesn’t only affect reproductive organs) causing severe pain, adhesions, and often causing infertility. It can take many years for women to get a diagnosis and treatment as it often does not show up on any imaging and usually requires laparoscopic surgery. A lot of women develop depression and anxiety while they suffer with this disease undiagnosed as they can be misunderstood and left feeling that the pain is all in their head. Often while they wait complications develop such as ovarian cysts, ovarian torsion, and having pelvic organs tethered and adhered to places where they should not be. There is no cure for endometriosis and the research is still lacking and underfunded. Most OB/GYN’s will “treat” endometriosis; however HOW they treat it can be superficial, ineffective, and also with outdated means. Specialists in this disease are truly hard to find as it requires knowledge and expertise beyond the general training of most OB/GYN’s and beyond the understanding of most insurance companies-which is another reason why endometriosis specialists are hard to find. The science behind the disease is better explained and up to date information can be found online at any of the following websites: https://nancysnookendo.com , https://www.endowhat.com, http://www.endocenter.org, http://endometriosis.org, http://www.endopaedia.info, https://www.endoupdate.co.uk

For my own personal experience with the disease…

When I first was diagnosed with endometriosis I was still open to the heavens you see as I had recently welcomed 2 babies into the world after truly believing it was impossible (4 years of trying and 1 week before my first laparoscopy booked in suspicion of endometriosis- fate would have it that I got to cancel THAT surgery with the VERY surprising news that I was indeed pregnant). I had gotten what I had once believed was impossible. And to be fair, I still consider my children to be miracles, just 17 months apart in age for fear that conception would not happen again. I still thank my lucky stars as not all women with endo can have children and while I don’t truly know, I have a hint of the longing and emptiness that shadowed those years my partner and I tried unsuccessfully to conceive. It seemed babies were everywhere and I could not look. At the time, I was as uneducated as most of the world is when it comes to the debilitating nature of endometriosis. I could take the diagnosis then as it would explain A LOT and it was welcomed in a way because it was helpful to pursue treatment. I did not know what was to follow; I did not know that the family life I had been longing for would be tainted and blurred, my career started and stopped, started and stopped.

Eight years and 9 surgeries later (6 in the past 3 years) I am struggling. REALLY struggling. I have had all of the conventional treatments available from my OB/GYN and covered by insurance - hormone treatments putting me into menopause at age 34, surgeries to drain cysts, detach ovaries from the uterus and pelvic side wall etc, hysterectomy and one by one my ovaries were taken out. NONE of these procedures are seen as a definitive cure for endometriosis. They are/were interventions. There is yet to be a cure. I have endometriosis in areas other than my reproductive organs though that were never treated as they were in areas that my OB/GYN did not feel comfortable operating on. The idea that endometriosis should go away without hormones is a story I’ve been told by many respected OB/GYN’s. Yet it is known now that endometrial lesions produce their own form of estrogen so if any endo is left behind during a surgery, it can continue to grow and cause pain. Excision (cutting out the endo as well as the tissue beneath vs. ablating or cauterizing tissue) is the gold standard of endometriosis surgery and can allow for true remission of the disease offering long term, if not life long, relief. I am only NOW learning how important excision is. I am learning because now that I have no reproductive organs, the endo seen and left untreated on my bladder and bowels and pelvic sidewall are still causing severe pain. Debilitating pain. I fear future repeats of intestinal blockage and the possibility of another emergency surgery due to adhesions. I have done acupuncture, pelvic floor therapy, trigger point injections, hormone medications, lifestyle and diet changes. After seeing several OB/GYN’s as well as other related specialists, the direction I am now continually pointed in is towards an “endometriosis excision specialist” who can do one last surgery- excise any endo that my previous drs left behind and remove the adhesions that have formed along the way. These specialists are often out of network and work as a team with other surgeons. Despite several appeals to insurance, I have learned that I will have to pay out of pocket to get the treatment I need. Something I wish I did 9 years ago when I first got the diagnosis. Something I wish I didn’t need $30,000 for.

So while I am not dealing with a terminal disease (per se, there can be complications that would present the chance) I am dealing with a progressive disease that has taken away my quality of life. It has taken me away from my children and my partner for days, weeks, months and now years at a time. It has taken me away from my walks in the woods, my gardens, my paints, my instruments, my tools, my stories... It has taken me away from family parties and almost every get together in the past 3 years. And most recently, it has taken me out of the teaching community. I had to resign mid-year on my second grade classroom (something I would have never dreamed of doing…) when the pain returned with a partial intestinal obstruction/ new adhesions were found. Despite “all” the past surgical interventions, the pain returned and disease persists. Now, I know some teachers that might be in tears walking away from their classrooms for other reasons during these past 2 years. But for me the tears still flow because of endometriosis. The tears still flow because I did not want to leave, I do not want this pain. But I have finally learned and knew this time that endometriosis is progressive, can become complicated without proper treatment, and can actually take years not only to get the diagnosis, but also to then get effective treatment.

It is in advocating for myself, using what always feels like the last ounces of strength, that I am determined to get the proper treatment. This proper treatment with an endo specialist (only a handful in the Northeast) will have to be paid for out of pocket as insurance has yet to differentiate between excision and other forms of surgery as available interventions (cauterization and ablation). The longest I have ever had to wait in this amount of pain prior to the past 8 months was 2 months. I am waiting because I have been told that I need to find an endometriosis specialist. I need to find a needle in a haystack that insurance won’t cover. Luckily I have been able to find a specialist in Maine that will be performing the surgery I need at the end of July. Unluckily, I have been unable to work and this disease often comes with financial stress in addition to the physical and emotional stress that affects me and my family.

I am debilitated daily and presently by this disease and constant severe pain. Until I get skilled and specialized treatment, I remain unable to support myself, unable to truly take care of my own children, and unable to work with the children I grow to love each year when I am blessed with the health to teach. These losses feel huge to me. I am missing my friends, I am missing my family. I am exhausted from trying to put on face so that my children, family, friends, past colleagues etc do not have to see or hear about the pain I am in. My world has become very small and very painful and I am stuck. I am stuck in my body, stuck with the pain; I am stuck without the funds to afford the specialist treatment that I need. Any amount that you may be willing to donate to this fund will go directly to my treatment/medical expenses. Any amount you may be willing to donate will be giving a mom back to her children, a partner back to a family system, a life back to a woman who is passionate and artistic with her teaching and desire to help and serve the community around her from the ground up. Any amount donated is appreciated beyond words.