#but @my insurance please let me get a fucking hysterectomy

[skywarpie]

I haven't even started my period yet and my endo is causing me so much fucking pain/making me so dizzy 🙃

[defilerwyrm]

May i ask how's the recovery process after gender affirming surgeries?

If you mean how's it going now: my last surgery was in 2022 so at this point I'm 100% healed up. I was SUPPOSED to get my implants in December 2023 but my insurance company has been fucking me over at every turn so that's still on hold.

If you mean how was it at the time:

Top surgery (2018) was pretty easy for me since I have a desk job. I stayed with family in town for the first 2 weeks, during which time I basically did nothing but sleep, wake up long enough to use the toilet, take a dry shower, eat something, take more pain meds, then go back to sleep. I had 4 weeks off work, so after that I was a little sore and still confined to button-down shirts because I couldn't raise my arms above shoulder level; then I went back to work and all was normal for the next month. But...

Because I am an unlucky son of a bitch, I had a rare complication: I developed a seroma that dehysced (i.e. a hole opened up along my suture line that leaked large amounts of greasy, bright orange fluid made up of lymph and blood), which was not painful at all but was absolutely disgusting and very alarming to experience—but not a medical emergency or anything, and was easily fixed with a revision surgery. I took another 2 (I think?) weeks off work and it's been fine ever since. The left side of my chest is a little funny but I don't really care, it was fully worth it. Please note that I did not have drains. If you have drains, you're even LESS likely to have this problem.

Hysterectomy (2019) was much the same: I slept through the first two weeks and spent the next 2 in a recliner with an ice pack on my lower belly, playing a lot of Stardew Valley and getting into Critical Role. I was lucky enough to live with a friend who loves cooking. I ate a lot of soup. The soreness wasn't that bad, but I have a policy of staying ahead of the pain by using timers for how often I should be taking them. The worst part of it was the pain meds, tbh, because I really don't like the way oxycodone makes me feel; at the same time, I'm grateful for that fact because it keeps me from forming a habit.

Phalloplasty etc (2021) was kinda rough to start. I had 3 months off work that time. Slept through the first 2 weeks as usual. But for the first 3 weeks total I had a suprapubic catheter in and man I fuckin' hate being cathed. I felt like I needed to pee at all times, even immediately after draining the cath bag. Awful. Learning to pee standing up was...let's just say I did a lot of laundry and cleaning, lol. This was made worse by the fact that I had two fistulae (holes that go through the urethra all the way to the outside)—like I said, I've got bad luck. One of them healed up all on its own, like most of them do. The other one required a revision 8 months later, which meant being cathed again for a while, SIGH. But back to post-op for phallo: I had physical therapy for my left arm to make sure I kept a good range of motion; I kept the graft bandaged with daily gentle cleanup, application of ointments, and rebandaging; and had to take dry showers for the first uhhhhh. 2 weeks at least, maybe 3 or 4? After I got the cath out, things were MUCH easier. I was just kinda vaguely tired and sore and spent most of my time lying down. My libido came back at the start of the 2nd month, which was frustrating af because it wasn't till the start of the 3rd month that I was healed up enough to do anything about it (but once I could, holy FUCK it was incredible).

[binglesbanglesbabies]

Hysterectomy, PCOS, Hashimotos, etc

Before things get too far ahead of me, I thought I needed to take the time to sit down and write out this post.

First of all: for anyone who is currently considering hysterectomy out there, or has been told they need one for one reproductive problem or another, and is searching the internet desperately for the ‘what ifs’ and ‘outcomes’, let me just say this: breathe.

I know, not all cases are going to be like mine, but I want to go ahead and put my experience out there, and it’s ALL GOOD, so if you’re desperately looking for some GOOD NEWS, you found it.

Background: I have Hashimotos and PCOS, which causes a veritable STORM of problems in my body. Symptoms galore. The worst was when my period decided it was going to keep coming back every other week and it made me anemic. (low red cell count, low iron, all the fun stuff). I was MISERABLE. Combined with my various OTHER symptoms from both issues (high blood pressure, liver and kidney problems, mood problems, sleep problems, headaches, etc etc) my PCP (that’s primary care physician) finally looked at me months after trying to wrangle the anemia in line and it just kept getting worse, and said: “With everything that’s wrong with you, have you ever considered hysterectomy?” with a cringe. I nearly leapt across the room in tears to hug him. I’d been trying for almost three years to find someone to do that for me after already losing one ovary to a cyst that grew to 10 centimeters (yeah, you read that right).

So, long story short, PCP was able to give me a referral to a different OB/GYN who was willing to work with me despite my ‘young age/lack of children, yada yada yada’, and I will NEVER be more grateful, let me tell you. I mean, don’t get me wrong, I got the usual ‘cautionary tale’ from the OB/GYN, as per usual (Oh, you’re going to go into premature menopause, and you’re going to lose all sex drive, and blah blah blah) and I was just like: Sir, I would like to stop bleeding my life away, who gives a fuck. I don’t have ANY sex drive at present, because I’m too god-damned tired and out of breath to even walk from one end of the house to the other because of the anemia, and my body is so fucked up from the hormonal imbalances caused by my OTHER hormonal issues, I wouldn’t even know. Hot flashes? Have those. Mood swings? Have those too. Give me a break. Besides all that, I’m Ace, have no S/O, and take care of my disabled mother. I don’t want children, don’t have TIME for children, ain’t interested in pleasing anybody but myself, and if I’m not interested in a night with my ‘special toy box’ well then that’s all right with me.

After a brief fight with the insurance (which didn’t want to pay for my surgery OF COURSE), I got my hysterectomy.

IMMEDIATELY after surgery, I noticed a HUGE change. I’m talking the MOMENT I woke up.

This body had been in PAIN. NON-STOP. And I didn’t even know it. I didn’t even know it until my uterus and remaining ovary were gone, and the pain of surgery was so MINIMAL compared to the pain I had experienced BEFORE surgery, that I could have DANCED out of that damned hospital if they didn’t have me hooked up to more devices than I even want to name. The nurses couldn’t believe that I didn’t want pain meds, but I seriously DID NOT FEEL A THING. In fact, it wasn’t until about 3-4 days AFTER surgery, that the surgery pain finally faded, and I realized I HAD IN FACT been in pain after surgery, but it was SO FREAKING MINIMAL, that I hadn’t noticed.

Let me tell you something I would NEVER go back to that pain, I don’t care what anyone offered me, I would rather die.

My mood lifted (of coursee it did, I wasn’t in crippling pain all the time anymore), I’ve had less headaches, sleep is still sketchy, but my blood pressure improved (again, less pain will do that) even my Hashimotos briefly improved. (I say briefly because Hashimotos is a tricky bitch and nothing ever lasts with it..) My red cell count has finally stabilized, though almost six months later we’re still waiting on the iron to catch up.

Physically, my freakin’ BODY changed. I mean SWELLING went down all OVER my body. Puffiness from my face, limbs, tummy, all of it. It wasn’t THAT drastic, but there’s a difference enough that people ask if I’ve lost weight and tell me I look SO much better.

Not to make too much of a point on it, but yes, even the swelling of my vulva and labia went down, which shocked the hell out of me. My clit reappeared, go figure. And that ‘sex drive’ I was supposed to lose? Um, Hell No. I think she took a U-turn and came back to see what was new.

And for those that are wondering: yes, I do achieve orgasm still. Yes, I do achieve orgasm faster and easier. My ‘G-spot’ is extra-sensitive now, and there is now no pain associated with penetration. The main difference that I’ve found in the six months post-hysterectomy, is that if you like those deep, cervical orgasms, you will unfortunately lose those if you have your cervix removed. I did, because cancer runs in my family. And it seems not a moment too soon, because fibroids, calcified cysts, all that fun stuff were part of the lab findings. Could it have been a non-issue? Certainly. Could it have turned nasty with everything that’s wrong with me? Absolutely. I’d already been warned I was at high risk for Endometriosis.

Also, so far: I’m not on hormone replacement therapy. My doctors are playing it by ear. We don’t want to send my body into another panic spiral while it’s still finding a new balance, so in another month or two, we do more tests, see where I’m at and discuss.

Now for the: ‘but all these articles say’ portion of our blog. I know. I read those. But as someone else pointed out: Almost all those articles were written by men. All the nay-sayers ARE MEN. Why do you think that is? What the FUCK do they even know about women’s health anyway? Are they female? Do they HAVE the REPRODUCTIVE MATERIAL NECESSARY to make judgements on whether or not hysterectomy is beneficial to women in my position or not? NO.

So, for ME, hysterectomy was VASTLY beneficial. I don’t have a single CLUE how I survived for all those years without it. I know I was miserable. I didn’t know HOW MUCH, but now that I do, there is no way in hell I would ever make a different decision than the one I did, and I am SO HAPPY that I finally got this done.

[pathologising]

my sister wants kids which like good for her but IM HERE just begging the universe to let me get my uterus taken out but like not have to ask for it

go in like yeah mf I’m DYING and they go shit’s gotta come out ✂️👩‍⚕️ and boom medically necessary hysterectomy covered by insurance 💪

like the pain in my side from Tuesday hurt like fuck but I was hoping it was an ovary 😩✌️

truthfully every time i have some sort of intense pain or cramp i am like please be my ovary exploding because im trying to get this shit out for free!

[truthfulrebellion-blog]

Hysterectomy

Let’s call it what it is. No pussy footing around it. A necessary evil on the way to the end game: phalloplasty. I had been waiting almost six months to hear back about my approval for phalloplasty. I currently have health insurance through Kaiser Permanente, and they had a laundry list of things for me to do in order to present my file to the medical board. I had to transfer my files over from the organization I was seeking healthcare through, as it was cheaper than paying out of pocket for an endocrinologist, to Kaiser. I also had to obtain letters from two medical professionals confirming my need for bottom surgery. The whole process took nearly a year and several trips to medical facilities nearly thirty miles away from my home. My case manager finally called and said in order for the final review to occur, I had to get a hysterectomy.

At the time, I thought that was done by the surgeon performing the phalloplasty at the time of the phalloplasty. With Kaiser, that is not the case. They want anything and everything they have the capability of doing done within their facility. Likely to keep costs down. I didn’t mind. My hysterectomy was scheduled for December 15th, 2018. I had to get blood tests done and watch several videos that didn’t pertain to my situation regarding the procedure. The videos are, obviously, geared towards women. I did what I needed to do and prepared myself for the surgery date. I got a call to move my surgery up about 10 days, even better. Then not 24 hours before the surgery, I received a call stating that it was being delayed for a week. My new date was the 11th. This was terribly inconvenient as my care giver for after my surgery had already taken off work for the original surgery date.

I walked into the facility to check in about an hour early. I had yet another interesting surprise. The surgery was going to cost me money. $475, or close to it. Luckily, I had the money. I was very upset that I wasn’t told about this ahead of time, however. I am paying for the most expensive coverage this company offers so I had as little to pay out of pocket as possible. In the grand scheme of things, $475 is better than $10k. It still would have been nice to know before I showed up. If you have Kaiser, please make sure you know exactly what the costs are before you walk in the door.

I got checked in. I had to remove all of my clothing, put on a hospital gown & surgery cap, and take one final per break. I also forgot to mention I had to stop eating at midnight the day of and wipe my body down with these pre-surgery wipes. I was hungry and my skin smelled weird. They hooked up my IV, fed me my “lunch”, and several doctors came in to ask me questions and verify information. My surgery was supposed to occur at 3pm, but was delayed until closer to 5/530. My surgeon came in to make sure I knew what was about to take place. He also talked to me about a surgeon for bottom surgery in Arizona or New Mexico he was going to refer me to. He had given me the name in our prior consultation. When I looked that surgeon up, I was horrified. The man was fired from the California region Kaiser Permanente for botching transwomens vaginoplasties. The guy didn’t even specialize in phalloplasty. I expressed these concerns to him and told him it probably wouldn’t be a good idea to partner with him for any trans surgeries. Hopefully he heeds my advice. He confirmed that after the surgery, he would stick to the decision to refer me to Dr. Jens Berli of Portland, OR.

I knew nothing of Dr. Berli. There are no results to been seen online, barely anyone who has undergone his procedure even talks about their results, and I couldn’t find any other information besides his starting point in Maryland. I found his Facebook page and did some pretty intense research on him. He seems to genuinely care about his patients and has a passion for what he does. His only negative review is from someone who never had surgery with him because of a communication issue with his staff. Everyone else gave him five stars. So, I figured why the hell not. Hopefully my progress will help others who may be going to Dr. Berli for their phalloplasty be more comfortable with moving forward with him or the surgery itself. I am flying as blind in this moment as some of those who might read this in the future might feel. Trust me. I feel your pain.

I finally went in for my surgery. This time I wasn’t put under until I was on the surgery table. For my top surgery, I was out before I turned the corner on the way to the operating room. The next thing I remember is waking up several hours later and in pain. I couldn’t keep my eyes open. I was very disoriented. I’m not surprised considering I was on anesthesia. Apparently I wasn’t breathing enough either since my O2 alarm kept going off. I had to stay for an extra hour until I could get my breathing going regularly. Which is hard because I believe I have sleep apnea, and when I sleep I breathe much slower than I do when I’m awake. So I would fall back asleep, stop breathing, and be woken up by the nurses to get me to breathe. I didn’t feel any different than I usually do. I was actually quite comfy. But I’m sure it was uncomfortable for others around me to see me breathe 1-2 times a minute while asleep.

I was in so much pain. The pain meds hadn’t kicked in yet. I had had a total hysterectomy, oophorectomy, and partial vaginectomy. Let me tell you. When your genitals are covered in stitches, sitting fucking hurts. I couldn’t get comfortable. Then I had to go to the bathroom. Lord, that was an adventure in of itself. Once I was done, I had to have the nurse help me pull my maternity disposable underwear and extra absorbent pad on. And to help me get dressed. The was a humbling experience. But those disposable underwear are comfortable AF. I wish I had had more of them. I was only sent home with the 1 extra pair. After I got dressed, they sent my care giver to get the car. They sat me in a wheel chair and wheeled me to the pick up area. Wheel chairs are super uncomfortable. I begged the nurse to let me sit on the plushy waiting area seat, but she told me no. I couldn’t wait to get out of that chair. It hurt so bad.

I’ll spare additional details about the trip home. I was basically in pain in the seat, it took over an hour to get home, and I got right in the couch seat I’d be in for the next week and fell asleep. I had to wake up every 1-2 hours to pee and every 4 hours to take my pain meds. Compared to my chest surgery, the pain of the hysterectomy actually wasn’t too bad. I barely needed any medicine. The worst pain came when I peed. It burned like the surface of the sun, and I could barely get the urine out. This lasted for about 2-3 days. I was bleeding pretty regularly for 1-2 weeks and spotting until the 6th week. I had horrible colored discharge the entire recovery. I actually had to go get adult diapers when my last pair of those comfy underwear got worn out. I couldn’t find any of those huge puffy pads or anything without adhesive.

I think the worst part was not being able to poop. I could feel the poop in my back. I really could. But I could not get my bowels to work. Apparently, this is normal. I ended up pooping on day 5. Best advice? Take stool softeners religiously. I would go so far as to say take a laxative on day 3 or 4 because that poop is going to be quite solid. TMI alert, my first poop after surgery tore a little bit of the inside. Like a hemorrhoid. I’m getting into these details because I wish I had had them. It’s not rainbows and butterflies. It’s bleeding and inability to poop. I also could barely sleep as I had to sleep on my back, and I can’t sleep on my back. I get so unfortable. By day 3 I was sleeping on my side on the other couch. I’m also a bigger guy, so I had to hold my stomach when I got up since there was a lot of pain from my belly hanging. I’m not 300+ pounds or anything, but I do have a beer belly. If you are the same, just be prepared for tummy pain when getting up.

I slept on the couch for 3 weeks. It was so much more comfortable than my bed. And it was easy access to everything. I am almost 8 weeks post op and still get tummy pain. But for the most part, pain and blood free. I do still have discharge coming out. I’ll probably continue to wear the diapers until I run out just in case. I had already ruined a pair of pants when I thought the discharge was done. But after about 7-10 days, I was walking around and driving and doing what I needed to do. It was uncomfortable to sit and bend over, so my roommate had to help with a lot of things. My final observation is to leave the scabs alone. I accidentally picked at my belly scab and one of the dissolvable stitches came loose from my incision. I had that stitch hanging out for at least 2 weeks until it finally dissolved at the base and popped off. My scars look great and my hair has finally grown back on my stomach.

I’m doing all of this well after my surgery, so I am sure I have missed a thing or two. If you have any questions, please give me a comment or a message. I will answer anything.

[mychemicalmenopause]

I Fired My Doctor Today

Woooow. So, after messaging with Karie this morning, Dr. Williams wrote me back: 

“Stephanie, I think it's very unfair that you have been denied this medication. I do understand your concerns with regards to waiting for this medication especially in the face of a possible repeat denial. However, I also have grave concerns regarding your proposed planned. Removing your ovaries without firm evidence that it would help is not something I can personally offer you. I am willing to continue to argue your case for this medication. With that said, you may be better served by seeing another doctor who would be comfortable with your proposed plan of removing your ovaries. Again, I am happy to submit the external appeal. Please let me know how I can further assist you. Dr. Williams” 

I posted his response on Facebook and a lot of people were upset for me. Some friends even sent links for doctors and lawyers. I called Carolina Women’s Health and have an appointment with Dr. Holly Stevens on October 12th. Then I sent the following message back to Dr. Williams:

“I sat down to write an essay about the research I’ve done that explains how Lupron only works about 50% of the time b/c the side effects are the same as regular PMDD / peri-menopause symptoms and it’s very hard to differentiate. There’s also research which states over 75% of women with PMDD have relief of symptoms after a TAH-BSO. I wanted to ask you to send me anything that can support your decision, but then I changed my mind when I realized you tried to push me off on another doctor before even offering to do the diagnostic surgery my insurance requested, or anything else for that matter.  

When I met you a month ago, you said you were ‘willing to do the hysterectomy and weren’t really comfortable with taking out my ovaries, but’ – and I quote – “I bet you could twist my arm.” You gave me hope that day, and today is a completely different story. If I gave you the go-ahead to submit the external appeal and it was again denied, we’re clearly not on the same page as to what happens next. 

I made it clear during my appt that I was not interested in a hysterectomy without an oophorectomy, and you said you were willing to work with me. All I can think now is that you don’t want to treat me because I unintentionally got your staff in trouble by asking for help. Between the issues with your staff and your refusal to treat my pain at any point in the last month, I’ve decided to find a new practice. 

Thanks for an absolutely soul-crushing experience and a very stressful month.”

For real though, what an absolutely awful month it’s been and shame on him for getting my hopes up for nothing. Men are the absolute fucking worst. 

[deathangel2015]

Can my insurance please let me get tested for endometriosis and these weird ass clotting factors that I have a huge family history of because I'm sick of being told I'm too young or too inexperienced to know and get tested for those things like what do you want me to do, start having sex, end up pregnant, and miscarry five times before you let me find out whether I have the same things as literally half of every other woman in my family from my mom backwards? And then you're going to make me wait until I'm 40 to get rid of the thing that causes the chronic pain issues because "you'll change your mind about having kids later." Lady, I haven't had any interest in having my own children ever. When I would play with baby dolls, I'd act more like a babysitter than a mom. If I want kids after I remove this shitty organ, I can fucking adopt or be a babysitter and make extra cash. I don't have the patience, the energy, or the mental stability to push a human out of myself after 10 months and take care of it constantly for 18+ years, and I'm sure as fuck not going to risk passing down one of my many mental and developmental and physical conditions to a human being if I can avoid it because I'd feel super fucking guilty about it because that's what I do even when it isn't my fault. I might be able to get the blood test for the clotting factor things on Wednesday when I go to the doctor, but they won't let me do the endometriosis thing yet and they won't even consider letting me get a hysterectomy even though I know I'm going to avoid having biological children at all fucking costs.

[d-i-r-k-s-t-r-i-d-e-r]

i couldn't do an automastectomy like this because my motor skills are just utterly fucking fucked (i love it) but i sure wouldn't mind the pain my shitty fucking health insurance that i'm legally obligated to have and pay for, pay so much for, wouldn't cover it solely because i'm trans and not for any other reason, it literally specifically excludes srs (and vision and dental aka the fucking only three things i'm fucking guaranteed to fucking need! i do still have vision and dental because i'm under nineteen though, and it covers testosterone even though its shitty restrictions almost certainly make it cost like half as much to buy without insurance because it has fucking copays, wtf, min $ (pronounced dollars but as if it were spelled like dollar$ or something, that spelling isn't right but it starts with d and has an $ sign in it) $25 and it almost certainly, like it says so on the website, requires you to get no more than one mo/(pronounced month)supply at a time, so $100 dollars for four months, whereas a 10 ml vial (4 mos (months) supply at least) is $44 and change ($0.38 for me, maybe more for others but still fucking affordable/cheap (some people can't afford this and that's terrible and i'm sorry) at walgreens with a goodrx.com coupon (go to goodrx.com and print out the coupon from there, other coupons won't give you that cheap of price and you probably can't transfer prescriptions out of walgreens once you put them there). like wtf. even if my insurance starts covering srs it's probably gonna have huge fucking copays, like (i think i did the math when i was sober but maybe i was wrong) $2000 (that's two thousand) for a fucking mastectomy (hysterectomies are also important and if i recall correctly, that is, iirc, let you take way less testosterone because the ovaries have a large effect on t production, and phalloplasties, metoidioplasties, or both, are also valuable, like, they won't give you a perfect cis dick but you'll still end up having some sort of dick and that's good. everyone should get a dick if they want one) which would otherwise cost $6000 fucking dollars, average, and i fucking want one but never in my life have i had more than $500 at one time, and that didn't count because half of it was my parents' which they were spending it on half of a computer for me. that computer is broken now and that is terrible because it was a good fucking computer. please god someone buy me a mac laptop, minimum 2012 but preferably 2014 or later, minimum eleven inch macbook air which i genuinely like and desire but bigger is also good, minimum four gigs ram, minimum 120 gb hd/sdd (my last was ssd i fucking want it), my last was 64 gb but that wasn't really enough, working screen and battery and power and not too slow or broken, air or pro or The New Macbook all is fine, i just want something that isn't fucking laggy and works fine and i don't want to fucking pay for it.) anyway. if i were to give myself a mastectomy, which i might well kill myself and would likely be in danger of it but by god someone fucking owes me something, i would probably, i might do it in private just because someone might otherwise stop me but probably i would, make as public an event of it as i could. pittsburgh is a $40 round trip from here and i'd take the most public square i could find on the internet or irl. i'd trigger warn to the best of my abilities because trigger warning is actually good but i probably wouldn't be able to get everyone and that's sad and i'd be sorry but sometimes you should do things anyway, you know? but i would do it right where everyone had to look at me and if they feel bad about it maybe they should have fucking tried harder to pay for professionals. maybe if they're transphobic they should have fucking stopped. i'd be morally wrong for this but so the fuck would everyone else. i'd have to go to the emergency room and maybe this would have copays but i wouldn't fucking pay them, fuck you. drunkenness fucks my motor skills but mitigates pain and eliminates caring (almost eliminates caring) and there is actual anesthesia (get a rogue anesthesiologist and probably pay for it, you need it injected into your spine and i don't know what it does to your motor skills but whatthefuckevs) so like whatever. it can be dealt with. protests are good and people should look at the horrors they've wrought. i would have awful scars but scars are cool. protest is good. make a fucking effort. anyway i'd do it very publicly and those who had to see me would deserve it.