Good morning Moonbeams! While I sit here with a cup of coffee it's time to make another bummer announcement. I've been trying to figure out a good way to put this information up and out into the world without sounding like a broken record or grossing anyone out, but the days are ticking away and I need to make this public. Skip to the last paragraph for the TLDR version.
WARNING: Female reproductive talk below.
As many of you know I have had a long-drawn-out battle with Endometriosis and reproductive organ problems for my entire adult life. For those unaware, endometriosis (or endo) is a chronic disease that grows along the uterine lining. To put it simply they are small black cyst like nodules that hang along the wall of the uterus and while normally shed during a womyn’s period, though for some, it can stay and spread to nearby organs including cervix, bladder, ovaries etc.
In 2015 I had blacked out from the pain twice- once while driving my car on the expressway, and once when a coworker found me passed out at my desk, my skin completely grey. I was finally diagnosed after 11 trips to the ER in 7 months and found a doctor who would not only listen to me, but also help me find some relief. During my surgery they found that it had spread to not only the surrounding organs, but was found on my stomach lining and small intestine, blocking blood flow to crucial organs. It truly is a shit disease. It was after that surgery that Moonbeams began back in 2016 mere months after having a laparoscopic procedure to remove my stage 5 endometriosis and have my tubes tied. I needed a happy creative outlet and making scents that put a smile on my face was the catalyst.
Fast forward to 2018- I am now living back home in Detroit after having moved across the country from San Diego, going through a horrific break-up, not having a stable living situation, and no real income other than Moonbeams, when I started noticing some familiar symptoms. I quickly found an incredible doctor who specializes in Endometriosis, and we started monitoring everything. As we suspected, the endometriosis had returned again. In January 2020 at the height of Covid I went in for another surgery to remove the again migrating disease and undergo a partial hysterectomy. It was not an easy decision to remove my uterus and keep my cervix and ovaries in place, but being in my early 30’s I knew I still had a lot of life left and immediate menopause posed more issues than good at that moment. It was a decision that I made as a sliver of hope that removing my uterus meant removing the cause of the disease. I should state that there is no known cure, or treatment in combating endo (though there are now a few medications on the market targeting endometriosis symptoms, three of which I was a clinical tester for). Doctors/researchers don’t know what causes endometriosis, why some womyn get it, why some get it and are asymptomatic, why some get it and can have it lasered off once and for all, and why some get it and can never get rid of it…
In June 2020 at my six-month post-op first follow-up the doctors had already found more cysts forming, despite them lasering off all 27 found cysts and making repairs to my heavily scarred cervix. In March 2021, I was started on a lethal dose of estrogen and Megestrol, a medication that helps the body maintain fighting infections and protecting your immune system while battling diseases. It’s often prescribed to AIDS patients and those battling cancer before/instead of radiation. It was another last-ditch effort to try and curb the spread of cysts, but again, nothing worked. The side effects were a wild ride that included severe depressive episodes and a 60 pound weight gain in the four months I took it.
In 2022 I set off for the desert to unwind my mind and try to find some clarity, it was there I started noticing more pain in other areas and other symptoms. I returned home and in August had a biopsy of the tumor that had developed in my armpit (cancer was ruled out, but my mammogram showed many more areas that I was unaware of). Ladies and gentlemen, get those lumps and bumps checked out ASAP. My team of doctors all but confirmed, this disease is now spreading out of my groin/abdomen area and is throughout my body and issues in other areas.
Fast forward to January 2023 where I sat in my doctors office, sobbing and begging him to remove any organ they can to make the pain go away. I am now sitting here with two ovaries that are completely covered in leaking cysts that are larger than the ovaries themselves. I am at a constant risk of sepsis, it feels like my insides are being stabbed by a knife from deep within my body, some days I can’t get out of bed and there’s literally nothing I can do other than sit with my heating pad and deal with the pain. My team is now certain I am one of the few people who do not respond to hormone treatments. Every time I try a new type of medication: birth control, progesterone, estrogen, all have caused such horrific side effects that they’ve caused more harm than good. After going through all of my operative reports, my 11 years of wondering what the hell is happening inside of me, and realizing I’ve had symptoms since I was a teenager, that always went unnoticed, and not discussed due to stigma around womyn’s body symptoms, and especially when those symptoms go awry, that this is something I will most likely live with for the rest of my life. No doctor can tell me that the next surgery will be the last, that it will finally all disappear, and that I might have a smidge of a normal non painful adult life.
It's become completely normal for me to discuss this disease and its MANY unflattering symptoms and ailments that so many are afraid to discuss or disgusted at. The way I see it, if half the population have these organs and millions of womyn are having symptoms, problems, and issues, shouldn’t we be talking about it? Shouldn’t we be raising awareness of a disease that is seldom talked about, researched so little, and instead work on building a community, sharing our shared experiences, and helping one another in any way we can? With this public platform I’ve been grateful to those who have reached out with their own stories and questions, and I will continue to talk about this taboo topic. It’s a part of me whether I want it to be or not, and damn it, I’m not done fighting and this is just another stepping stone along the way.
And with that, in March I will be back on the ole surgery table to remove my “friable” scarred cervix and laser away the cysts once more. On March 3 we will have a massive “Spring Fling’ restock where the scents we had ready for our March and April restocks will be combined into one big extravaganza before we close on March 23. Looking at a 4-6 week recovery (including no stairs or lifting anything for 3-4 weeks) I anticipate opening in mid-May to help kick off summer and get back on a healthier track going forward. For those of you that made it here to the end I thank you and adore you. We’ve had to close down for surgeries and accidents a few times in our 7 years of being a business and we will rise again!
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Laura
May 06, 2023
I am really sorry you’re going through all of that. I hope you’re feeling better soon. Take all the time you need to heal we need you around to create your awesome melts! 😊💙