I'm a low-income cash patient (no insurance). I'm in "the gap" (too "rich" to qualify for government/state insurance, too poor to afford anything else).
I recently qualified for help at a discount surgery center. They want $15,000 to perform the operation (a significant discount, considering other hospitals/doctors wanted $76K-$90K). That price includes everything — consultations before and after, the operating room, the surgery itself, and any necessary post-op care/medications. The catch? They want the full $15K, in full, upfront. That's... simply not possible.
Ideally, I'd have the operation done immediately. However, I've been told that November or, at the absolute latest, February, would work. My diagnostics start expiring in November — with all of them expiring in February — therefore, the longer I wait, the more the price will go up as all of the tests (blood work, ultrasounds, biopsies, etc.) I've already had done will have to be redone before they can proceed with treatment. That would not only delay treatment but add to the overall cost (which is already far higher than I can afford).
I will add more personal entries as posts/updates as I'm able, detailing my situation and the pain I've been going through. However, since this is primarily a menstrual issue and not everyone is comfortable with in-depth descriptions of blood loss (my last period lasted 64 days straight) and other bodily malfunctions, I'm sticking to the basic/bare medical facts for the main page.
That said, here's what's going on inside my uterus:
* I have an ever-growing fibroid. A fibroid is a non-cancerous tumor. It's growing "slowly" (which is good as it's less likely to turn cancerous); however, it's already taking up over 1/4th of my uterus. If it continues growing at its current rate, it will completely fill my uterus in about 9 months. Symptoms include pressure, pain, heavy bleeding, and bladder issues.
* Endometrial polyps. My uterus is chock full of fleshy nubs that contribute to my irregular + heavy menstrual bleeding.
* Endometrial hyperplasia. Basically, the lining of my uterus (over)grows quickly and out of control. Fortunately, thus far, it has presented without atypia (cancer), but that could change if it isn't removed/controlled. Symptoms include heavy painful bleeding, blood clots, longer menstruations/bleeding times.
* Adenomyosis. Full disclosure: This aspect cannot be diagnosed "for sure" until after my uterus is removed, but it's highly suspected. Basically, in addition to what I said above (my uterus' lining being lumpy and overgrown), the lining is also growing into the actual muscle tissue of my uterus where it doesn't belong. Symptoms include severe cramping/stabbing, heavy bleeding, longer periods, blood clots, and overall pain/tenderness in the pelvis and lower abdominal region... I have all of that and then some, which is why it's very likely.
All of these conditions will most likely get worse, rather than better. They "may" get somewhat better after menopause, but I'm a good 15-20 years away from that stage of my life. My doctors, family, and I would prefer I not have to wait two decades before "maybe" feeling better.
I also run the risk of anemia and, eventually, cancer. Thus far, I've been able to nudge myself out of anemia with the help of iron/iron-rich foods. And, thus far, my growths are non-cancerous. But cancer runs heavily on my maternal side and waiting could be extremely risky.
I've already exhausted other options. I've tried birth control pills, shots, an IUD, diet/lifestyle changes... My uterus refuses to cooperate. And "less evasive" procedures to remove my uterine lining/polyps/fibroid are temporary (I'd have to repeat the surgeries again and again, about every two years, until menopause). The only permanent treatment is removing my uterus completely.
My husband and I don't want children. It's one of the reasons we married each other. Plus, we couldn't even if we did (I'm infertile). My uterus' only function, for me, is a source of pain (mentally, physically, and emotionally). It needs to go. Preferably soon.
Thank you for reading all this. I know that 2020 has been Hell for everyone, and I don't want you to feel badly if you can't help/donate. The fact that you took the time and cared enough to read this far means a lot to me. If you're unable to donate, but would still like to help... please share this page!
I'm keeping my expectations (very) low, but every donation — no matter how small — and page share helps immensely. THANK YOU!!!
First, and above all else, I want to express my immense gratitude to everyone who has donated and shared my GoFundMe campaign thus far! I was reluctant to post it (these are troubled times for all and I didn’t want fixing me to break anyone else…), but my friends were enthusiastic about the possibility and I’ve sworn many times this year that I would try EVERYthing to get myself back in action. The GoFundMe is both my last resort and small-but-significant (thanks to YOU!) part of “try everything.”
The past five days, since posting this campaign, I’ve been overwhelmed by your support and generosity. My expectations were set extremely low. I thought I might get around $5 (or, if I was enormously lucky, $50). As of this writing, you’ve donated over $1000! That’s already 1/15th of what I need to live a normal life again!! In only FIVE DAYS!
I don’t know what to say other than THANK YOU! It doesn’t feel like enough, but I can’t think of what other words to use to express how much this all means to me. I’ve never been the best at verbalizing my emotions, but I’ve definitely been…emotional. I’ve cried, I’ve smiled. I’ve been all over the place. But, I suppose, the strongest emotion I’ve felt these past five days has been hope. It’s been several months since hope drifted through my emotional radar — I almost didn’t recognize the lil blip when it appeared! — but you’ve all given it back to me. Thank you, thank you, thank you, thank you!!
If you’re willing/able, PLEASE keep sharing this page! ♥
I do want to answer questions, as they come up, as best I can. I want to be as transparent as possible with you all. My close friends have told me that I’m not obligated to answer anything; however, I feel that, whenever money becomes involved, so does obligation. Whether that notion is valid/justified or not, I may never know, but I do feel obligated to respond…
Of course, I may not be able to answer EVERY question publicly, as some questions would endanger my safety [too personal for a(n) public/internet post] or they may violate GFM’s terms (I cannot, for example, go into full detail of the graphic nature of my issues as they involve significant bleeding and other unsavory factors that most folks outside of the horror community would be repulsed by).
That said, here are some of the questions I’ve received via email ([email redacted]) and private messages the past few days, and my answers:
“Are you scared?”
Absolutely terrified! But, to quote Heather Langenkamp’s Nancy Thompson in A Nightmare on Elm Street: “I’m into survival.” Some things have to be done, even if they scare the livin’ daylights out of you.
I’ve only had one major surgery in my entire life. I was born without my right hip. My first/only surgery was when skilled doctors/surgeons at Children’s Hospital in LA built me a hip bone from scratch.
I’m eternally grateful to Children’s Hospital for giving me the ability to walk, and I donate to them every December (sometimes as little as $5, sometimes much more, depending on my personal finances). I will be forever indebted to them for their life-changing procedures.
But… I absolutely loathe hospitals. I try to stay away from them as much as absolutely possible. And, I guess, I’ve done a pretty good job so far? Most folks have had more than one surgery in 35 years.
I actively avoid hospitals as much as I possibly can. As a youngster, I spent months in a hospital bed, then a cast, then a wheelchair. I had endless x-rays (perhaps the metal plate didn’t cover my reproductive organs as well as they thought?) and tests. I had a blood transfusion. I had doctors and surgeons prodding me for what seemed an eternity. Most think I was “too young” to remember any of those experiences, but I do. They were my first memories. The first deep grooves in my gray matter.
My parents did their best to keep me healthy and happy and away from hospitals as much as they could when I was growing up. I ate extremely healthy foods, I exercised regularly. I was taught to know my body, to know when something was amiss. Although I often struggle to express my emotions, I’ve been “tuned in” to my physical self since before I could walk. The body that cases my soul is flawed, but I know it well.
I know it well enough to determine, with absolute certainty, that the doctors are correct. That I’ve tried every other option and the time has come for surgery. This hysterectomy is absolutely essential and there’s no other way.
So… yes. I’m scared. But, while all of this has rendered me weak in many ways, I’m still (mentally) stronger than my fears. I’ve also learned that deep fear, if conquered, is often followed by wonderfulness. The benefits of a hysterectomy far outweigh the risks and any fears I have — and having a normal, productive life would be more wonderful than I can even imagine.
“What’s all this like for you?”
I can’t describe it in full detail because graphic descriptions of pain and gore would, at best, gross everyone out and, at worst, be in violation of the ToS for this platform. If you insist on getting the FULL scoop of how awful this all is (I’m not sure why you would, but some people have!), you’re welcome to send me a message.
For a glimpse of what it’s been like… here’s an entry I wrote in my diary when my flow briefly stopped (it returned two days after I wrote this):
It’s currently 3:25am. My period has fully stopped for approximately 24 hours.
It lasted 64 days (give or take about 4 hours) this time. From July 5, 2020 to the wee hours of September 7, 2020. 64 days of endlessly bleeding, 64 days of fatigue, 64 days of intermittent waves of nausea, 64 days of painful bowel movements, 64 days of terrible sleep that never felt restful no matter how many hours I was under, 64 days of headaches, 64 days of constant pain.
Constant pain that was “dull” but never unnoticeable. With daily bouts of stabbing, pinching, twinging pain just to keep me on my toes. At one point, I was keeping notes of the most severe episodes. The times when I’d be curled up, crying, practically paralyzed with pain. Then they became a daily occurrence.
That said, what used to be my “severe” days — the “worst of the worst” oddities that became my routine torture — did manage to have two standout days in spite of themselves:”
[this section omitted because I went into great/graphic detail]
…” The pain had me reeling — I was nauseous from the pelvic pain and the migraine, blinded from the visual disturbances, clenching my teeth so hard my jaw hurt for days afterward. I refused to go to the emergency room. The last time we’d gone, my husband wasn’t allowed to be with me. If I was meant to die, I decided, I would rather do it at home with my beloved, my caring parents, and our sweet pets — not locked away, alone, in a hospital, with people who have thus far not even attempted to help me other than to run diagnostics to confirm what I already know (“Yep. You’re bleeding a lot! Have a nice evening and look for our bill in the mail.”).
Fortunately, my uterus didn’t kill me that day. But the fear was real. The decision regarding my mortality and desire to spend my last moments among loved ones was real. And it was terrifying. Soul wrenching.
The following days, my period bleeding became lighter and lighter until it eventually stopped completely on September 7, 2020.
But for how long…?
My last period ended on June 24th and I rejoiced. I took it easy for half a week, not trusting my body. Not believing it that my suffering had truly ended. Then, I regained my usual cheeriness, my lifelong optimism, and wrote off my 60-day bleed as a hormonal imbalance that had finally righted itself. I happily returned to my usual activities.
Then, the bleeding returned — much worse — a mere 10 days after it stopped. On July 5th, my period came back with renewed vigor… as if it had taken a 10-day leave to meditate and strategize and grow exponentially stronger.
This time, it lasted for 64 days.
What happens next? I dare not return to my usual activities. It will come back. And, if the last leave of absence and violent return are any indication, it will be even worse when it does. I’m forced to limit myself to sleeping and eating (an activity I had trouble doing while on my period since my flow has always come with nausea and decreased appetite since menarche at age twelve).
My focus is purely on building my strength — preparing for my next battle.
My uterus has always been a bully, but it’s turned into a warlord. And I don’t want to lose this war. I have far too much to live for.”
After I wrote that ^ entry in my diary, my period returned a mere two days later, on September 10th.
What’s all this been like for me? In short: Absolutely awful.
When I was living with an abusive roommate a few years ago, I would breathe a sigh of relief every time he fell asleep. I knew that I’d have a few quiet hours alone with my own mind. A few hours to freely be myself and desperately grasp at thoughts and activities that would keep me happy and sane enough to make it through the next day.
That feeling of dread, of being constantly on edge, of living in fear from an inescapable abuser inevitably awakening to inflict a fresh Hell is back. This time, from within my pelvic cavity.
My periods have always been terrible in regard to duration and blood loss. I’ve always felt my period coming and dreaded the 8+ days I’d be painfully bleeding. I would feel the twinges in my uterus, the grip of fatigue, and the gloomy haze a week before my flow would officially arrive for its monthly “visit.” A week of pre-menstrual symptoms, a week-and-a-half or two weeks of menstruating, and then a week of blissful freedom and joy when I’d get the bulk of my work/life done.
Now? I have 60 days of menstruating. Around a week of pre-menstruation symptoms. And then 64 days of bleeding again. Where’s my week of freedom? I’m being held prisoner by my uterus!
IT SUCKS!! I’m not sure what else there is to say about it. It sucks to the zillionth degree. I hate the pain. I hate the fatigue. I hate fearing for my life (via immediate concerns with slipping into anemia and further off concerns that my various growth may eventually stop being “benign”). I hate that it’s all out of my control and the ONLY way I can live a normal life is to remove my uterus — which is ALSO out of my control because I can’t afford the necessary surgery on my own! I hate it. So much.
“Have you really ‘tried everything’?”/”Have you tried other options?”/”Why a hysterectomy and not [less evasive procedure]?”
Doctors have been trying various things to get my uterus to behave for years. Issues with my dang uterus are pretty much the ONLY thing I ever go to doctors/hospitals for! Every time, they think they’ve come up with “the” solution… And, sometimes, it helps a little (enough to “live with it” for a while), and then my Uterus from Hell comes up with a new issue. It’s a demon that NEEDS to be exorcised from my body!
But, since so many have asked, here’s the full rundown of what I’ve done thus far:
I was first put on birth control pills when I was still a teenager. I was on various forms of The Pill for just shy of twenty years. Different brands, different dosages, different combinations (estrogen, progestin, a mixture, etc.). Estrogen was crossed off early on as a treatment because I get migraines. From there, I've tried different brands + dosages of progestin (synthetic progesterone) were ineffective.
I’ve tried the shot. Twice. Both times because my bleeding dipped me into anemia and my period needed to be stopped “immediately.” The shot did not stop my period either time, but it lessened it enough that, with heavy doses of iron, I was able to climb out of anemia. But, the shot made me feel extremely ill, and I had bouts of vomiting and other intestinal issues in the three months it was in effect. It saved my life in a literal sense, but diminished my quality of life to almost nothing. I was no longer bleeding into deadly anemia, but I was still spending the bulk of my time in the bathroom unable to live/work!
In 2017, when I briefly had insurance, I sought a hysterectomy. I figured, “I’m 32, I’m in good financial standing for the first time in my life, I have insurance… it’s time to finally rid myself of this beast!” However, I was unmarried at the time and was denied because my future husband and I “might” someday want children. Which was… ugh… I don’t even want to get into what that was. Enraging, I suppose, would be the best description. I think children are awesome, I get a kick out of the adventures my parent friends have with their kiddos, but I’ve never wanted any of my own. My husband, who I married in 2019, holds the same views. This incident was just grossly unfair, but there wasn’t anything I could do even when, a few months later, it was revealed I was infertile because my ovaries are (almost) as defective as my garbage uterus. The “your nonexistent husband may have use for your uterus someday maybe” argument still held firm. UGHHHHH!!
So, in 2018, I got an IUD (known as a “coil” in Europe, I’m told). It made my period lighter (8 days of bleeding instead of 14), but came with much worse pain. But I figured a few days of extreme pain in exchange for lighter flow was simply the deal I had to accept. Especially since I lost my insurance and my finances plummeted.
Then, the pains got worse. And my periods went back to my “normal” (long, heavy, exhausting) but with the addition of more pain. This started in October 2019 and “ended” with the abrupt expulsion of my IUD during my period in January 2020. So much for that medical “solution.”
It was then determined that synthetic hormones (pills/shots/devices) just don’t work for my body. I could’ve told them that! But, of course, it’s only official/”true” when someone with a medical degree says so.
So… those options are all out.
As for alternative treatments:
Doctors seemed to think that my BMI was to blame for all of my problems. I argued, of course, because I’ve had troubles with my uterus at EVERY weight (and I’ve been nearly every weight at this point!). But, just to be sure, up until I was no longer able (as of May 2020), I was exercising my lil heart out and made tremendous changes to my physical physique. The “Age 35” photo of me above was taken earlier this year. Since then, I’ve lost 25lbs more.
Note: I've already been told by the surgery center (the place this GoFundMe is raising funds for me to go to for a hysterectomy) that my BMI is NOT an issue and that I’m well within healthy weight limits for the facility, the surgery, and the anesthesia!
I eat a healthy, iron-rich diet. I don’t eat processed sugar (and, due to my lifelong soybean allergy, I don’t eat many processed/fast foods in general!). The only caffeine I ingest is from my green tea (which was recommended as an “alternative treatment” by a doctor — and, while it does help with some of the inflammation and keeps me well-hydrated, it doesn’t do much else). I don’t take any medications. I only take Tylenol for pain (Aspirin and Midol were nixed because they thin your blood/increase blood flow and the last thing I need is to lose more blood more quickly).
I don’t want to have my endometrium scraped or have my fibroids and polyps removed. Uterine linings grow back. New fibroids grow to replace the ones chopped off, like the many-headed hydra. Polyps return as well. These “less drastic,” “less evasive” procedures only ensure that, after spending hours in my most loathed place (a hospital) and having a traumatic surgery, I’ll be doomed to repeat those experiences again and again and again until I hit menopause. Which, at 35, might be far in my future if achieved naturally.
No, thank you.
To quote Mal Reynolds in Firefly: “Someone ever tries to kill you, you try to kill 'em right back!”
My uterus is trying to kill me. Physically, emotionally, mentally, and spiritually. I’m not going to stand for that. I’m not going to spend my adult years in and out of hospitals. I’m not going to be broken by a bully — especially not one inside MY body!!
Unfortunately, although I have a great many talents, surgical expertise is not among them. I can’t defeat my uterus and regain my life on my own. I need help.
Which is why I, reluctantly, started this GoFundMe page. Help is within reach, but I can’t reach it on my own.
Thank you again, to all of you who have donated thus far (and to everyone who donates from here on out), for helping to extend my reach so I can finally grab hold of the help I need. Once again, I’m so very grateful.
Please keep sharing this page!! Please!
If I get more questions, I'll update this again... But, hopefully, I've covered everything? Let me know. In the meantime, I'll continue to rest, pray, and try not to do anything to make my internal bully angry. Thank you (again and again).
- Anca Dumitru
- Amy Sherwood
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