Monday, February 27, 2023

I Dub Thee, Princess Peach

 While I wish I had much more news to give by way of medical dramas, what my doctor told me is pretty much less than what I already read on the scan results. I’m bleeding for the third time in a month, not heavy, but there can’t be anymore lining left to shed. It’s a grapefruit sized tumor, likely benign, pressing all up on everything and throwing me into the chaos of bad back pain and bloated stomach and decreased appetite.

As for the header, yes, I named the tumor. Princess Peach. I hope to evict her ‘to another castle’ ASAP. Hoping I hold up until my appointment March 7th to see what can be done. Hopefully before it gets bigger and does more damage. I’m absolutely lethargic as well. When I start to think too much about this body I don’t recognize, I have to find a distraction. I finished drafting the crochet fireplace pattern and published it at least. Took a few days of constant work to pull it off.

I feel like I’m in a wretched stasis at the moment. I’ve joined private support groups for women with fibroids to ask questions, answer questions and find some understanding when I’m desperate to connect about it. Despite the lows, I’m finding ways to balance my moods, let myself cry and operate somewhat.

Yet it surprises me that fibroid like this aren’t considered a higher priority. There are so many risks with every passing day with one this big and causing so much inner chaos but my doctor actually said ‘you’re not bleeding heavily so it’s fine. You can wait’. Except hospital and esteemed medical pages don’t say that at all. They say see a doctor immediately for symptoms like frequent periods (check), heavier or lighter periods (check and check), dizziness, nausea; hell, check them all aside from heavy bleeding. It doesn’t say ALL but IF ANY. I mean, I did disclose all of this but I think once my very Catholic doctor realized my near-future infertility conflicted with her beliefs about intervention, I could tell she was closing the window on this massive health bomb and pushing it to the doctor I have yet to even meet, the new gyno.

Which, sorry to say, a doctor with beliefs that isn’t flagged for those beliefs affecting quick and thorough patient care is a huge red flag in the healthcare system’s myriad shortcomings. No female should ever be referred to a doctor than can delay or deny crucial care. This delay could very well create complications like enlargement of the tumor, degradation or rupture, organ damage and, as physical symptoms become more unbearable, depression and suicidal thoughts. And my doctor literally waited 8 days to even look at it, called me up and very exasperatedly told me there’s a tumor, it’s this big, likely benign, I’ll send it to the other doctor. No ‘if it hurts, take this’ or ‘hormones or this might help or delay risky complications’ just a very clearly read dismissal of any of it. 

I’m irritated because it’s damn hard to find a doctor available, on my insurance, and that isn’t a whole day trip to get there and back. She irritated me a lot, lecturing me about how to eat healthy when I asked for what to do when nothing (including her bullshit portion chart) wasn’t working. I was able to get back on my ADHD meds and omeprazole for the GERD, but the minute what I thought was perimenopause kicked in and I made the mistake of asking for birth control instead of hormones to balance the PMP symptoms, things in the lady parts department have been a touch hostile.

I think this is why she insisted on a pap and then an ultrasound. It seemed like she was trying to show there was nothing and I was making that up too. But when the ultrasound showed a mass, she was already passing the baton as she ordered the CT and referred me to the OBGYN. Her plan to undermine that there was a real issue behind my suffering had not gone to plan and she knew I didn’t wish to have children so I wouldn’t hate losing my uterus instead of enduring many painful years of surgeries to save it before it was infertile anyway.

It feels sinister and dirty that I even confided in her about so much of my life so that she could better understand how to treat me when this whole time she was pocketing a pass to leave me hanging when I needed guidance the most. I was angry as hell and sad, but once I dealt with the betrayal, I did mobilize and find support and distractions and information to try to minimize any problems caused by the days I must wait for actionable help.

I don’t know what I would do if I was working and this always makes me think of the other women who are thrown into even more desperate headspaces. Will I lose my job? Who will watch my kids? Who will care for me while I’m healing? When can I get this nightmare over with? Who can I trust? Can I afford this? Will I die if I just can’t find the parameters to get better without making people mad at me? Is it better to die than to fight to get it done rather than sacrifice myself to not inconvenience people? Why are there not more visible support channels for the people that society marks as caregivers that often have no one to care for them when needed most? Why are there so many huge archaic loopholes for women to fall through in a country that pretends to be advanced and modern? Why are we told we have enough or too much when we have so little or nothing where we need it most?

And the amount of women I’ve seen that have their loved ones genuinely confused about why a hysterectomy is such a big deal, like it’s not removal of a whole internal organ near so many other internal organs. They have the internet and could take the time to search for answers if they actually gave a shit. Instead, they often treat it with the same ignorance as any women’s health difference; we’re using it as an excuse, doing it for attention, it’s not really that bad. Surgeries are ‘common’ for this so stop being dramatic!

Here’s the thing, boys; all of your sexual organs are on the outside of your body. They can literally be chopped clean off and you’d be fine as long as the bleeding is stopped and the pee shoot it kept open so you could still urinate. Castration, like vasectomies, is insignificant to anything but ego. In the same way, we can catch STIs instantly since the fluid exchange happens inside of our bodies and outside of yours. Guys can sometimes be exposed to these infections many times without actually contracting it from a female partner. 

Oh, but what is a grapefruit sized tumor when a woman’s body is meant to carry a whole baby? A growing child begins many chemical processes that help the body to adapt to the rate that a human being grows. Comparatively, a large tumor is not recognized as natural but is also outside of any way for the body to recognize it and combat it. Because the cells are your own body growing on misfired signals, they are not identified as foreign. babies that grow too big are also removed when the body cannot accommodate it. Cancer also works this way but can spread and encourage other organs to waste energy growing more useless cancer until we die from our organs to do the job they’re actually made for.

Which brings me more firmly into cancer. Is cancer scary enough for you? Here’s the thing; statistically, half of men and a third of women will get cancer in their lifetime. No big deal, right? Obviously, cancer caught early can be sent into remission; it may come back but if it doesn’t in five years, you’re considered ‘cured’. Your risk is exactly the same as everyone else’s again. But when you start looking at where the fatality risk stats increase and factor in the ‘silent killers’ that are only treatable if found or not found until they kill you, cancer is pretty damn scary. 

Now ask the right questions about risk for a hysterectomy. How big is the tumor? What is it pressing on? Which organs are being damaged? How big are the complications and risks and fatality risks for a woman her age, her size? How long did they go unnoticed? What happens if they rupture before they can get into surgery? What does a woman’s reproductive system do that she will need to compensate for, depending on what is being removed? Will her choice come with more future complications no matter which one she chooses?

And why the fuck do doctors repeatedly brush off a woman’s intuition when she says something is very wrong? Why are woman gaslighted for how much pain they’re in, diet, exercise, whether he has value if she doesn’t look good, if she’s a woman if she’s not making babies? Why are doctors allowed to be  complicit in this widespread ignorance and distrust of their female patients?

When does life start again if we can manage to navigate these no-big-deal fibroids and live to tell? 

Why the fuck is JK Rowling vilified for reminding people that these are some of the many reasons womanhood can’t be a social construct or an identity you can wear, that we have a word and an identity and a set of problems that our trans-women do not? (That we wholly accept trans-women on every level that doesn’t negate our struggles and it’s not fear or hate for them, but desperation not to lose more ground.)

I mean, I can definitely whip up a lot of related rabbit holes, but let’s work on all struggles in a way that doesn’t get to silence anything on a really frightening level. My big hill is Princess Peach. I will celebrate when you run off with my uterus to that big incinerator in the basement. Or wherever it is they banish biohazardous materials. Your castle awaits. My fight continues to my dying breath.

Saturday, February 11, 2023

Feelings on Things

 I don’t really enjoy getting in my feelings and I always resist it until I can figure out what to do with them. Sometimes it needs a primal release, a good cry or a scream. Sometimes I just need to clean and organize because I need order in the internal noise. Sometimes I just need to take a purposeful action because executive dysfunction and impulse just lead to guilt so I’ll try to beat those. Other times o need to be messy and remind myself that I’m flawed and trying to achieve perfection will end up hurting myself or others.

But always, I avoid the immediate impulse to share. Some people might assert that the value is in those raw emotions but my experience is the exact opposite. Finding words for that rawness in retrospect is where I can express their true meaning and value. In the moment, that expression is ooga-booga levels of display and only placing value on the rawness denies what I can learn from it. I recognize raw emotion and there’s never more clarity, just opportunity to direct it in a healthy way. Anyone can have a raw emotion, few can evaluate it to help others understand or relate to it.

It’s difficult for me to introduce what feels complex without making others wonder what this verbosity is leading to and I don’t mean to seem vague or mysterious when I’m doing it. But this is the foundation of how I’m handling a difficult human experience right now. I’ll try to summarize events here before I touch on feelings once more.

At 41 years old, I believed I was experiencing early menopause. In case you don’t know much about female anatomy, 51 is the average age for menopause so signs in your 30s (where I first started experiencing hot flashes) and acceleration in the early 40s isn’t the norm. I’ve known a few women who had hysterectomies in their mid 30s, after having two or more children. One was my grandmother and this being a discussion in my family, I knew this was not the norm.

In December, I had my period early that month so I wasn’t expecting another until the New Year. I track my cycle because I understand it’s an important part of women’s health and in this case, proved it all the more true. My next period started Christmas Eve so I knew it was far too early. I was seeing my doctor in January for routine follow-up for ADHD meds so I would bring it up then.

I thought it was a fluke but brought it up anyway. I was on my period for the visit but it was strangely heavy, for longer than it is usually heavy but it was a little late for this cycle, not by much, just a couple days. Since I was on my period, she scheduled me the next week for a Pap smear. I brought up ‘birth control’ but she got defensive and I realized she was likely against it due to beliefs but also that she took it the wrong way. She seemed to be less judgmental when I corrected wanting it as because I believed I needed the hormones to regulate this. I was somewhat relieved that she was amenable to the reason but also angry and sad for other women who are very much entitled to have that choice and shouldn’t have to have difficulty finding that option…

The Pap smear was painful but no more than usual. This was my second ever and the first showed no abnormalities. I got this because I was overdue and was told I wouldn’t need another in five years with a negative HPV result. No problem. She did a thorough breast exam, vaginal exam and swab and rectal exam. Not fun, but I know how to check out mentally so that I’m not emotional during these things. Pelvic pressing was actually somewhat painful so this is when she referred me for an ultrasound.

Luckily, the Pap smear came back normal, no HPV. Expected, if only because I’m not sexually active (another fact that is often treated like me being dishonest or maybe ashamed of promiscuity I’m being ‘prudish’ about). I know that fibroids and cysts and polyps are not affected by whether or not you have sex and just one of those anomalies of being human.

However, I start my period before the ultrasound. A little over a week before the last one ended. Two days were light, heavy before the ultrasound and seems to taper off but it’s sort of heavy on the day of. Not ideal but doable. The best time is right after the period finishes but I now know predictable is not in the cards for me anymore.

So I go into the ultrasound and I’m really comforted by this fast-talking woman who is sorry/not sorry that she will walk/talk me through it. But I’m not nervous at all, just ready to empty a very full bladder I needed for the pelvic exam. It all goes well and then the transvaginal part is next so I empty my bladder in the adjoining private bathroom and remove the lower clothing and drape a sheet. The wand she uses she compares to a tampon but honestly, it was actually far more comfortable. I smell blood the whole time because of my period but I imagine it’s part of the reason there’s no discomfort other than that slow leaking sensation. I know that relaxing the muscles makes these exams less painful but there was really no pain throughout anyway.

I know that technicians are not allowed to give away anything they see so I don’t ask and just answer her questions. Within a half hour, I’m done and she gives me the privacy to clean up with washcloths and get dressed. She tells me they’ll call on Monday.

After being home for a couple hours, my doctor calls and I know this isn’t good because doctors call promptly when something is wrong but I’m calm. My intuition told me in December something is still not right so the Pap was just one small victory. They couldn’t find my right ovary and suspect a tumor behind my uterus.

And I know from having one before (in my foot) that tumors are often benign, not malignant/cancerous so I wasn’t upset. I told her as much and patiently waited for what came next. She is arranging a CT scan and a referral to a gynecologist, recommended a male (I don’t have a preference now that I’m familiar with the process), one that also does surgeries in case that is needed, it will be quicker to get me in. 

I know that a hysterectomy is probable to remove all possibilities of it getting worse. If you know anything about me, you know this isn’t traumatizing as I’ve never wanted to give birth. At this age, it’s dangerous; any pregnancy after 35 is considered geriatric and high risk anyway. I wasn’t sure about hysterectomy options but I looked them up; most are outpatient and minimally invasive, healing in 4-6 weeks. The one for cancer is much like a C-section but removes everything, requires a small hospital stay (2-3 days) and a proper healing time of 8 weeks. For reference, my foot took half a year to heal enough to relearn how to walk on it and several more years for feeling to return properly. Extremities take longer but this is a comparatively smaller healing time. Complications for all types are relatively the same otherwise.

Of course, I was curious about how many people seem to think women have the same ‘use it or lose it’ risks that men’s sexual health is governed by and once again felt sad by the lack of women’s information without heavy bias. Abstinence pages are about warning women about the dangers of promiscuity (moral damnation) or ones trying to press the ‘cons’ of not have heterosexual sex and you really have to dig for the truth that none of these ‘cons’ are anything that self-pleasure doesn’t provide— yet with none of the cons of infection or risks from hygiene and fluids of a sexual partner. None of these search pages were tailored to the probability of abstinence by choice, the presence of asexuality. And I almost cried when they even emphasized that trauma and mental health are no more factors of this preference than it is for any other orientation. 

Planned Parenthood, you were that site and this is why I donate to you. Only you had at least some insight into my own concerns and once again sealed it that there is no medical consequence for not having sex or beating children. 

In my research, there are increased risks for cancers and complications due to childbirth though. This is why it’s very important that women are not bullied into sex or motherhood or social choices that benefit men without those considerations. 

Nevertheless, I could now be certain in conversations with people I care to educate that this is not due to something I didn’t do, should have done or could have done. Because whether men intend to or not, some are still conditioned to question our choices in the consequences of having female parts.

So this is where I am. Still bleeding heavily 5 days from when I started my period too early, prepared for the worst and hoping for the best. And what are my feelings? The usual. Apprehensive, uncertain, strangely relieved. I’m used to having my concerns dismissed when scans or tests can’t find anything. It’s surreal when there’s something they can see, real plans to tackle it. It’s not just ‘maybe fibroids’ to watch for changes. It’s something and there’s a plan. I’m not quite sure what to feel about it. I’m lethargic, likely from the blood loss, but still managing to attend to basic care. Is it cancerous, is it not, what’s next? I didn’t really know where to go with all of this but I didn’t want to announce it all over social media but I did want to put it somewhere publicly. Because the obstacles for women are still too many. Because the information considering asexuality is hard to find clear answers among the biases, always suspicious of the reasons a woman is looking at her sexuality and her sexual health. Defiance or shame, always appealing to our feelings, scarily blocking just the facts of our bodies and our being.

I want answers. I want feelings. Mostly, I want to hope that I will get the best care and begin to heal. And live to fight for those women I empathized with along the way, the women I couldn’t just be glad I’m not, but wanted to someday have access to choice and be heard before it’s too late. 

Ladies, I hear you and I hope my voice helps you too. All of you deserve safety and health and access to education to make the best of choices for you. This is why I can’t be silent. We all need to know this isn’t a fight we stand against alone.