Autism and Menstruation: 10 Years Without A Period | Navigating Sensory Challenges
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- Опубликовано: 12 сен 2024
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Did y’all know that they can numb your cervix for IUD insertion, but doctors just CHOOSE NOT TO?? I’m so lucky to have had the nurse practitioner that I did. “Barbaric” is a good word for it
What the actual fuck?! So I went through that pain, multiple times...for nothing? Assholes!
You’re so right. Idky I didn’t, immediately, remember that. I had that done, when I got my first endometrial biopsy. The next time, that doctor told me how quick it would be and that there’s no point, because it’s only “slight discomfort.” For who??? Him? I have really traumatic memories, whenever I think about it. It’s impossible to forget. That’s messed up!
I know your comment is six months old from the time I write this, but you are so right. I had had both IUD types (hormonal and copper). Both were painful, to insert and maintain. And, the doctor who put in the hormonal one had cut me, and I had gotten an infection. A lot of these doctors are indeed hacks.
The reason is research is showing the numbing does next to nothing and increases the risk for reaction. Doctors are not trying to torture their patients, and they want effective pain management just as much as the next person. My iud insertion hurt, but it was over so fast that using anesthetic would have been complete overkill. It sucks, but I assure you that more research is being done to help this issue.
@@baileymadison9019 I had endometrial biopsies, both with and without anesthetic, and it felt like torture, when I didn’t have it. It was more painful than my 30+ hours of labor and childbirth, for me…and mine was described, by nurses, as particularly painful and difficult. I went through labor and birth with no anesthesia or medication. The doctor had the nerve to tell me it wasn’t pain…it was just discomfort. After having my uterus pried open, to insert a scalpel and use it, I had to wait at the clinic for hours, for someone to get me, and could hardly walk for several days. To not even use a local anesthetic was just cruel, whether the cruelty was intentional or not. The reason why is that not only do people have different pain thresholds, but some of us have extremely painful gynecological conditions. I have endometriosis, adenomyosis, interstitial cystitis, and endometrial hypertrophy. Research findings that, in the majority of cases, anesthesia makes very little difference has nothing to do with patients who do experience significant pain and trauma when no anesthetic is used. Doctors should still listen to people who experience more pain than most, but they usually just stick to their protocol…probably for liability reasons. I have decided that I will die, before I elect to go through that amount of pain again…and maybe I will. People who experience severe pain with having their uterus pried open shouldn’t have to make the decision to either suffer through painful procedures, or possibly die a painful, early death.
More. We need more of this kind of conversation. When I got my period in 1978 at age 14, I thought I was being punished for being female. I was so fucking pissed.
Menstrual cup all the way!!! No night time leaks, no marinating feeling or smell. Cheaper, healthier, more convenient. Cannot recommend them enough, changed my life!
absolutely!
YES! 🙌
I just can’t deal with using one of those tho 🤦🏻♀️
I literally can't stand even the thought of sticking my fingers down there during my period, so absolutely no way for me.
Tried that once... Never again. The cramps it gave me were terrifying.
I use toilet paper wrapped in a paper towel, held ln place with a safety pin. Not for really heavy periods, but you don't sweat in them and it's plastic free.
I hope this comment reaches you. My periods as an autistic person have always been hell. Until I found period discs. I started with disposable ones, which I don't think you'd like as they make a crinkley plastic noise. But now I use a reusable one. It's changed my life. They're known to help with cramps. And once it's in, it feels like nothing. I know they say that about tampons, but for period discs it's true. They are different from cups as they don't require suction to stay in place. Having a period disc has been the best for me sensory wise as it genuinely feels like I'm not on my period with it. I haven't had a single issue with leaks, and you can wear it for up to 12 hours. There's no link to TSS. And if you're anatomy is right, they may even self empty when you pee. They are mess free, and you can wear them during sex and it's completely mess free then as well. Every month when I got my period before it literally made me want to unalive because it was so bad and I couldn't picture living with that pain for most of my life. Finding period discs (and I was lucky enough to find birth control that works for me) has drastically changed my life. It used to be so bad I couldn't move. I've gone to the ER while crying out in pain. I also had my appendix out and my cramps regularly were sooo much worse. I cannot recommend period discs enough, not just to other autistic people, but to everyone. I feel like everyone should at least give it a try. They usually sell sample packs with I think 5 or so of the disposable if anyone who isn't bothered by crinkley noises wants to try them without committing to a reusable or a big pack of them. I hope this comment reaches someone and helps someone find something that works better for them. It might be scary to have to put something inside you, but it's really easy and comfortable once it's in place.
What about really heavy flows? I'm afraid they might leak a lot
@@Bunny-ft9dy I tried them and they were too messy for me. You have to take the disc out and dump the blood whenever you change it, and you end up getting blood all over your hand. Also if it's not in at the right angle it will leak. I found them really uncomfortable to have in honestly. But I'm so so glad they help others!!
@@chronicallyplanty4259I prefer the cups for this exact reason. Used the cup for 15yrs with no mess, tried the disc and it was a massacre. No thanks 😅
@@Bunny-ft9dyfor what I have seen on demonstrations they hold more blood than a menstrual cup. I am a menstrual cup user but I want to try a menstrual disc.
@@Bunny-ft9dy the one that I use reportedly can hold up to the equivalent of 6 super tampons. especially as someone with sensory issues and has dealt with meltdowns because of pads and tampons, menstrual discs have changed my life for the better. I can't recommend them enough, but I'd suggest doing some research first, especially when it comes to getting a reusable one, since reusables come in slightly different configurations for different needs and cervixes (ex. some have softer or firmer silicone, some have pull tabs for ease of use, etc). the only thing with a reusable one is that you have to wash it every ~12 hours, which, imo, is a trade off I'd take in a heartbeat a thousand times over for the benefits it's given me. on the last day or two of my period (when I don't have really bad cramps), there will be moments I forget I'm even on my period still.
This is such an important perspective to share. I'm really glad that kids and young adults (and adults too, of course) today and in the future will have access to resources and information about autism and neurodivergency that I never had. Even discussing the unique discomforts of pads as an autistic person is something I've never seen online, but I can only imagine how validating it would be to know that you're not alone in such experiences, especially when it's so easy for others to dismiss these things as something that everyone deals with.
I'm a girl (25), and I was born without a uterus, but I feel so blessed because I've never wanted kids 😅 I love them, but I just really don't want to get pregnant and give birth 'cause it would be a sensory hell for me 🥺 If I ever want a kid, I'll adopt one. So I don't know why I'm watching this as just listening to this story feels painful, and I'm literally crying rn 😅😭 Sorry you had to go through that hell, Paige 🥺
I'm the same way with not wanting to give birth or be pregnant because of sensory issues. The idea if a baby moving around in me for nine months is a big no
I'm just worried about getting the baby out😭 the paaaiiinnn!!!!
I feel this. It would be a sensory nightmare and I don't think I'd make it through the hormones. My periods get me all messed up as is. It scares me to think about whether or not I'd be suicidal from it. And so I rather not for my safety and they babies safety. And just I'd be a shit mom. I barely take care of myself.
Coming from someone who was finally diagnosed with endometriosis, the amount of pain I had to be in for people to actually believe me and take me seriously was and still is bizarre.
Same!
I felt like Garbage for three weeks of every month thanks to endometriosis! Menopause has been pretty fair, hot flashes are a nuisance, but better than migraines and cramps!
I have had the same experience. I was completely infertile, before a doctor would do any tests. That’s a cause of great sadness for me.
Good call on not getting the arm implant. I got one, and at first it was great, no period! Then, after a couple of months, I started bleeding, and I bled for the remainder of the three years.
Also, on the topic of parental gaslighting, I can relate. I was gaslit for 49 years, and then finally was diagnosed as autistic. Then, of course, they wouldn't believe my diagnosis. So I guess the gaslighting continues 🙄
Yeah it's so tough figuring out birth control cause they just give you one and hope it sticks. I do have the arm implant and here's to hoping it will work out. My period also lasted a month while I did meticulous research cause they said "oh it's normal to spot between periods. Your classmate that experienced non stop periods on it? that's probably what happened" No it fucking didn't. So through research I found that sometimes people get prescribed the bc pill to balance out the hormones and get rid of the periods. So I waited a bit more hoping it'll go away, but at one month i got fed up and scheduled a follow up appointment where guess what they tell me about? The pill. Like why was this not presented to me when i first had it put in, i didnt even bring up that i found out about it, she just immediately said she can prescribe it. So like, if its so well known why wasn't it included in the original spiel about side effects when 10% of people take it out cause of their period symptoms. I also looked at statistics and generalizing it a bit, about 1/3 lose their period 1/3 have it regular and 1/3 get longer periods. 1/3 of the millions of people on it?! That's a pretty high chance, so they should've told me so I'm not stressing out for a month straight thinking I'll have to take it out and find something else that works when all others seem like terrible options to me on top of having extra stresses of things in my life it would affect. But yeah, currently im still on it. They said to take the pills for three weeks, if it doesnt go away take it another three. Mine did go away within a couple days of taking it and the three weeks just finished up. So now I'm waiting whether my period will stay gone, come back as normal or possibly come back non stop like it did before, in which case I'll ask whether i can take the pills for the rest of the 3 years.
Omg, you too?!? You're the first other person I've heard of this having happened to. Thankfully our superperiod on that thing only lasted 5 months, but that's still WAY too long and it was HEAVY. We took iron supplements every day and were still chronically anemic
Sorry you had to go through that@@SoLongSpaceCat I actually have hereditary heamachromotosis, with the treatment for is blood letting. So it was probably somewhat theraputic for me, lol. Really good to be able to talk to someone else who had the same thing. Thanks for replying to my comment 🙂
I had the implant put in, got my period like.. twice during three years, worked great for me. sorry, that sucks
Straightforward conversations about menstruation are necessary. Too much shame and embarrassment when it comes to honest talks about female bodies, throughout the lifespan….periods - menopause
great video! be well 😊
Everything ever to exist should be spoken of
Some time ago a paper was published on the testing of menstrual products with actual blood (it had never been done before and it's enraging) and it showed that pads, tampons and period underwear can hold way less blood than they advertise. That's why the bloody bed situation is so common. I use a menstrual cup, maybe they can work for you too.
heyyy, fellow autistic here. I've always struggled with the period process so I wanted to share my cents on it hahah
I can't recommend period cups ENOUGH, they deserve the entire world fr. I was really scared at first because I had no idea how to get that thing inside of me, but after multiple years of tampon use I was confident enough in at least shoving up period products inside me so the cup part didn't feel as scary anymore. And HOLY SHIT the difference. You only need to empty it 1-3 times per day depending on your flow, I usually do it in the morning and before bed, but when it's inserted you barely feel it, it's not at all like those tampons that feels dry and itchy and like you're sitting on a rock. Not to mention that tampons need to be changed every 4 hours or you're at risk for poisoning, AND, at least in my case, one gush of blood and my tampon is used up and doesn't have an effect anymore. The cup even stops the sensation of bleeding, it's barely there anymore. And since it's silicone you can keep it in there over 24 hours during the early stage of a period or at the end when it's only staining. After a period you only have to boil it in water and it's secure to use for the next period. When I empty it during the week I just rinse it in water to get rid of the blood before inserting it again. Sometimes I do it more thoroughly by using non-perfumed body soap, specifically those that are pH-friendly for vaginas, but it's not required. ANYWAY to sum it up, as an autistic adult the period cup is near sensory free, it contains a lot more blood than tampons or pads and all you need is a lil panty liner to catch some staining from the vaginal opening. After some uses to practice the inserting and pulling out part it literally is the best period product you could get, I'm not joking.
I love menstrual cups 😊
Also you can keep the large round alcohol wipes on hand and use that to clean it between uses when you're still on your period. As well as disposable gloves if you're concerned about sanitition or don't want blood on your hands
i got my period just before i turned 11 and i literally spent the whole day laying down in the bathtub (no water) crying and everyone was like what is going on this is so dramatic lmfao. i had really bad cramps where i would puke and have to stay home from school and i hated pads so much that after a while i just fully stopped using them and just raw dogged it and always wore a black sweatshirt tied around my waist, i def had some incidents where i got blood on chairs but luckily i would notice before anyone else so i never got humiliated but it was truly awful every month. it still is but at least i’m not in 6th grade
I got mine at the same age, spent most of the day crying in pain and forcing myself to sleep. I cant take pills, so I have to use liquid medicine (taste and texture of it makes me gag, but it helps) and the pain makes me scream sometimes. I've only thrown up once because of it, but I will scream and cry myself to the point of exhaustion
I feel you, I got mine at 10 and a half. It's absolutely unfair for a child to have to go through that. Pads disgusted me so much I started using tampons on my own and when my mother found out she accused me of betraying her (?).
@@pilotracoon80BETRAYING her???? Goddamn
@@pilotracoon80I'm sorry but your mom sounds kinda bat shit crazy. It wasn't about her, it was about you bc it happened to you. Anyways hope your period/menses is better now 😊.
Thank you for reminding us dudes how lucky we are not have go through this sht every month / at all & that you deserve to be listened to about what you ladies need. If period pains are anything like the cramps I've had with CVS I've so much respect for you.
I hope things go smoothly for you in the future with this. ❤
what is cvs?
@@rembbokie Cyclic vomiting syndrome. It's pretty rare - & (for me) diabolical.
Thank you for talking about this. I’m AuDHD and since the age of 12 I suffered with debilitating period pain and feeling unbearably depressed/ anxious before each period. I’m 29 now and it took 16 years to be diagnosed with endometriosis and pretty sure I have PMDD too. I tried all sorts of birth control pills but they made me nauseous. I got a Mirena IUD last year and finally had an op this year for endometriosis and it’s given me so much relief. The insertion of the IUD was awful and I threw up, had an upset stomach and almost passed out after. If I’m honest the pain of having it inserted matched the pain I was in every month, so a few seconds of that was worth it in the long run. I’m so much more emotionally stable, I barely bleed, I still get pain but it’s manageable. It really is a struggle for neurodivergent people let alone with extra health stuff on top.
The openness around periods in this video was SO refreshing, thank you Paige!!
I can hard relate regarding the no birth control judgement... after taking co-cyprindiol (birth control pill) from 15 years old into my early 20s, (I had severe acne and suspected PCOS as a teenager and this pill had anti-androgen effects) I stopped because I realised I felt like absolute garbage all the time. I couldn't believe how much better I felt without synthetic hormones all up in my business! No more constant headaches, terrible brain fog, mood swings, zero sex drive. Quite scary when you think they're popping these young teenage girls on pills like these during their crucial years of development!!
Now whenever I'm asked about BC methods by doctors or nurses they seem shocked that I'm not on or taking anything. No, I don't want bebbies either doctor. Keep your fake hormones to yourself. Leave me be!
I agree! I haven’t had my period in 5 glorious years, but when I did, period underwear was the only thing that made them tolerable. Also I totally relate to growing up in a no pain med household, so I had to handle my periods with only hot showers, hot pads, and hot tea.
IUD insertion was the most painful pain for me too. I couldn't use tampons the first time I tried them either, but now they're my go-to (plus liners) to avoid mess. Every month my period is a surprise to me even though it's been happening most months for 20 years. Poor interoception is rough. Thanks for talking about this. I wonder how much PDA makes it even harder.
I learned . . . SO many lady-time things today. Thank you, Paige. Also, that light hitting your back wall looks like the flare on a jet engine, except not so loud. It is very awesome.
I have uterine didelphys, basically two completely separate uteruses (uteri???) and I only figured that out earlier this year because my periods desynched (yes, some people with this mutation actually have two separate periods naturally, but I didn’t until stress effected my cycle). I had AWFUL cramps when both were synched, I had about two days where I relied on ibuprofen in order to function and I can’t imagine my autism made it any less maddening. Fortunately I’m planning to go on birth control but until I do both periods are barely painful at all
The scream I scremt thinking about having a period TWICE a month, I’m so sorry
I'm sure you probably know this but take the ibuprofen with food because if you don't take care of your stomach you can end up with gastritis. I won't give you the gross details but you don't want it, and I became intolerant of NSAIDs (not just ibuprofen but also others) so I couldn't use the ibuprofen any longer.
@@GeekGamer666 don’t worry! I always keep snacks with me if I know I’ll need ibuprofen!
Thank you for this! I have autism and just got my first period this is so helpful!
I'm glad you're talking about the sensory issues that come with periods. Doctors have always gaslit me because I CANT physically be on birth control but they continue to push it. I told them I can't because I can't even be on pills for basic health for long periods of time either. Every month I was in the ER getting 3 shots of morphine and I could still feel the pain. They continued to think I was a drug seeker and being over dramatic but I developed an intense fear for my period. I would be so scared I wouldn't eat for a week leading up to the period, I would take all kinds of pills (yes I mixed) just so I would pass out and sleep long enough to be knocked out while the pain was going.
Now I'm older and the pain is still bad, but nowhere like it was (thank god) and now I've done research that talks about PMDD being a common comorbidity in Autistic women. Not only did Autism explain a lot of my childhood and adult struggles to this day but it actually gave me answers about my menstration and why I suffer so much. Funny how it took so many years and self research to find answers but all these ass hat, POS doctors (yes I hate doctors now) can't think of shit. I hope your menstration journeys don't continue the painful route.
This video came out at the perfect time! I just quit my birth control after being on it for almost 8 years. I started it at 15 and I’m now 22. Thank you SO much for sharing this. I have always struggled with sensory processing as well. I haven’t had a period in years.
I had my periods but I also just quit my birth control after 7 years. Still no period after 3 months but I got a big ass cyst on my ovary 🫠 I think I need an IUD but I'm going there after taking strong painkillers
Reusable pads are really helpful too cause they clip around your undies and cant shift! Theres so many options for them now!
It's so refreshing and validating to hear someone say the things that I've been thinking to myself for so long.
Dude you're legit my new favorite to watch, I haven't found a creator quite so similar to me or that i vibe with at least so personally in a long time and i have NEVER found one with autism! and since I'm in the learning stage about my OWN autism this is just pERFECT. LOVE U !
The fact that you posted this video right when I wanted to research this topic is incredible 👏🏻
Your personality is so fun. I could listen to you talk about probably anything and be entertained.
Hey Paige. Been watching for a while! This bit is unrelated but i feel like I should share. I've always felt like I'm an alien or I speak a different language. I wasn't allowed in the gifted program when I was tested in my early school years, due to social reasons, basically they told my mom they suspected autism but she never did anything. I have always kinda gaslighted myself about it but I'm 32 and today I learned that my genetic mutation is heavily associated with autism and I almost cried, because I felt like I finally have something tangible to bring to my behavioral health providers, but I realized how lame that is. I shouldn't have waited this long to say something, theres nothing wrong with asking my doctors. Anyway, I am going to see a new GP soon so hopefully the meds for my gene mutation help. All the diagnosis will change is my therapy right now, but it would also help me accept myself more. Bc my mental illnesses are managed but I'm still dealing with being.... weird I guess? 🤦♀️
I had a hard time with tampons too, they never ever ended up being comfortable. For a long time i used the disposable menstrual discs, which definitely took a lot of getting used to sensory wise, but in all other aspects of being on my period they have been a game changer. Plus, they have a very low risk of TSS. I am healing from a pretty intense LEEP procedure so im just using period underwear and the thin foam pads bc theyre the only things that are comfortable. I have to get a hysterectomy so I wont need any of it soon but I just thought I'd share. As far as my cycle goes, its never been regular, but I have the nexplanon implant and now its regular but shortened. So I get it more often but they're only 3-4 days. This is the ONLY birth control that hasn't royally messed up my cycle. I'm on my second implant. It's like its not even there now. 10/10 bc for me lol
What up, Paige? I am enby, but I don’t have those things. I skew girl personality wise, but I skew boy physical wise. I love watching your channel, but I admit I was hesitant to watch this video, but it kept being recommended to me, so here I am! Not even grossed out, just thought it wouldn’t apply lol!
I was the one who discovered my autistic oldest daughter had started her period. She was sitting in the bathroom when I discovered her underwear. I knocked on the door and handed her a pad and asked if she knew how to use it. She said yes. I made sure to tell her the sticky side would stick to her underwear. She said, “I hate you!”
One of my favorite memories.
Omg someone else who’s experiencing what I’m going through rn! 😱 I really appreciate you sharing this! Im about to start my 3rd period (post-puberty). It’s a really difficult adjustment! 😣 I’m autistic too and had two IUD(s) for 10 years total before having it removed. BUT where we differ a bit is that after the IUD removal, I wasn’t on birth control (asexual) and I didn’t get a period for nearly 7 years (secondary amenorrhea). I finally got medical insurance again and 4 months ago I saw an excellent OBGYN that specializes in endocrinology. Through labs found out my estrogen levels were below that of menopausal women. After starting a birth control pill w/ estrogen and progesterone, I’ve had two periods and I’m about to start my third. I’m tempted to switch to a pill that will allow me to skip periods all together, but a part of me worries that might not be good for me… periods are really rough with sensory issues and I’ve found the period undies to be helpful with easing my anxiety about leaking (an anxiety that was definitely instilled during middle school after seeing a girl get relentlessly ridiculed and bullied for leaking and having period blood on the seat of her jeans- 😢 most of the bullies were girls too…
I'm on the process of being diagnosed, pretty sure I'm on the spectrum. Periods have always been hell for me. Setting aside PCOS and how painful and abundant is my period, my main issue is sensory stuff. I hated pads they were all wet and sticky, I can't stand feeling the blood against my skin and the smell (I'm very sensitive to smells) were really bad. Eventually I tried tampons, still didn't like them. I finally switched to the menstrual cup and it's was the best: no leaks, no blood on my skin, no feeling wet or that I was wearing a diaper and freedom of movement. It takes a little practice to use it correctly, but once you do, there's no going back. You shoukd try the menstrual cup.
You can get waterproof mattress covers that have a layer of like, terry cloth type material on the side that would be contacting your sheets, that way it doesn’t just feel like there’s a layer of plastic under you
you describing the iud made me cry so hard uncontrollably. having something like that happen to me is one of my biggest fears, and the fact that invasive practises by doctors is basically unavoidable for women and afab people because of things like smear tests horrifies me. being afraid of stuff is commonplace for me, but they tend to be things that i may never experience. smear tests and generally invasive medical procedures are something i cannot avoid and will inevitably have to experience. and that is so scary to me beyond words. i've never had any procedures in that area of my body yet thank god but i dread the day it happens. just the idea of it alone sparks so much fear and stress in me that i burst out crying and panicking from it.
also your perspective on the way you'd experience pregnancy resonates with me so much and is exactly my feelings on the matter. all power to the people that are able to be pregnant and want pregnancy etc, but for me the idea of it all and everything it comes with freaks me the fuck out to a point of frantic panic. for all the awful sensory shit, and also simply the idea and awareness that a living thing is growing in me, freaks me out to no end and i can't bare the thought of experiencing that myself. pregnancy and child birth is a wonderful thing and all, but for me personally it sounds like torture and i never want to go through it. ever since i was a kid i knew i didn't want pregnancy or to give birth, but i was like "maybe when i'm older my mind will change", which is what the adults around me told me. i'm an adult now. my mind is the same, in fact its even more against the idea of giving birth or going through pregnancy. and what you said about feeling like you'd be a risk to you or your child during/after, i completely understand and relate. when i first learned what postnatal depression was i immediately came to the realisation that that is exactly what would happen to me if i was ever pregnant/gave birth. i know myself and i know how i deal and don't deal with things, and i know for a fact something like that would traumatise me and break me.
sorry if this is too personal. felt like opening up since its a discussion i rarely see
I can relate to so much of this! Periods are definitely a sensory nightmare. I didn't have a normal menstrual cycle until I turned 31. My periods as a teenager were so heavy and lasted for 10 days and were so painful. I wasn't a candidate for birth control because of migraines, but not using birth control my periods were hell. As I got older they stopped coming monthly and I could skip the better part of a year before having one, but at the same time still get all of the related symptoms minus the bleeding. In 2019 I had a very large ovarian tumor that had to be removed along with the ovary via the same process as a C-section. After that my periods were back to being super heavy and occurring every month. I have rejected an IUD every time one is offer to me because of my sister's experiences. I can finally use a low hormone birth control which is necessary to keep my bleeding under control, all I had to do was lose an ovary I guess.
Period underwear really is the best way to go, try the material fleecy period pads get the longest ones for night time , I bleed soo heavily and was irregular for years, bled for most of most of my school life from the age of 10 until I went on birth control at 18 just to stop them. Fleece pads are actually comfortable, eco friendly and washable in the washing machine in just hang them to dry and don't put them in the dryer both my (to be diagnosed Autistic) daughters are comfortable with their fleece pads too, they are like me full of sensory issues and I just wish I had known about them earlier in life...I didn't find out about them until I had had my 3 kids. Who are now 14, 12 and 10.
I’m at the other end of the whole period thing; I’m 42, and I’ve been in perimenopause for over ten years. And I’m just ready for it to be over. Menopause now, please. Anyway, since you didn’t make any mention of this, I’m wondering if you’ve tried a menstrual cup. They’re different from all the other period options, because they’re not absorbent. They’re made of silicone, and they go inside to catch the blood, then you remove, empty, clean and re-insert. It’s a bit of a learning curve at first, but honestly, they’re more comfortable than any of the absorbent options. Also, because of the fact that they don’t absorb anything, they don’t mess with your body chemistry and do weird stuff to your internal pH. Just a suggestion as you get used to this “new normal” and figure out how you want to handle it all.
I feel you on that perimenopause. Only my perimenopause started in my early 20s and is still going 😅. Without birth control to manage it, I'd be in a padded room.
Not everyone is able to use even period cups because of pain. I’ve had pelvic floor therapy, tried everything but i just can’t use them :/
Whoa I got my first period in 7th grade when my mom was on vacation , and I thought it was digestive problems too! Luckily my mom had prepped me well and my Grandmother was looking after us and she helped.
I relate to your tampon pain story. I tried one exactly once at about the same age and was like nope nope nope nope nope. Never once since. I’m a big period undies fan now.
Tampons were so hard for me. I hated it, and it was so painful.
Also get a wetbag to store the dirty period underwear then you can wash them all at the end. It keeps the smell out and it's made in a way that can't mold or mildew
I got my first period when I was close to 12 years old and didn’t realize I was on my period until day 3 (idk my thought process at the time 😅) and I was pretty regular until high school and especially after I started college when my periods stopped all together due to my now diagnosis of PCOS which is apparently common with autistic people. Thank you for sharing your period experience and shedding light on the struggles of being autistic and having periods
This was really cathartic, I didn't know other people also find periods sensorily difficult.
As someone who doesn't menstruate, I think there should be a way to like transfer it to someone else. Like that would solve nearly all the problems with this topic: the other half wouldn't be so cavalier about cramps and childbirth, if there was a really bad month for someone they could divvy it out to like three other people, politicians wouldn't be taking rights away, stuff like that.
I'm so glad you made a video about periods, tysm! 💖
I'm currently going through a similar situation, it's been 4 years in a row I'm not getting periods (and 7 years with only a few periods overall, surely less than 12) and well, earlier this year I had to stop taking trimestal injections bc of my bone density decreasing and bc I developed a cyst in my liver... I took the last shot in March and well, I'm currently waiting for my period to come back so I can switch to a better option to manage my endometriosis... But it can take up to 2 years for that 1st period, depending of the case
And yes, as an autistic person periods was always a sensory hell to me... I'm quite sensitive to pain, so everyone dismissed my complaints regarding strong cramps and things only got worse bc of endo, only got diagnosed with endo 2 years ago and bc I got endo scarring in a external area (navel) and this is a whole separate sensory hell, I want to cry every time I feel pain in my navel area
Well, now that I've mentioned I'm autistic, it's been 4 years in a row I'm not having periods and that I have endo on top of that, you can imagine how frightened I currently am with that wait to get that 1st period... I know it's gonna be extremely painful and a sensory hell, but unfortunately it's something necessary in my current situation 😔
Try out a menstrual cup
Im not autistic so I cant really understand sensory issues but I think its totally worth it. No wearing a wet diaper feeling, no wet feeling down there, less smelly, try it out.
Hey! This is just obviously my input as an autistic uterus owner that uses the bar in their arm but: i love it!!!
When i was 12 i started mine too, and literally every month i had to take a couple days off school bc it was so painful and nauseating to the point i was basically paralysed with pain hovering over the toilet bowl throwing up for the first few days. When i was 14 i went on the pill and it helped keep me regular and manageable but i still had a fair bit of pain. Then when i was 21 i got the implanon bar. I seriously swear by it, it hurt like a mofo to have it put in and my arm bruised up for like a day and half after but once the injection pain was gone it was the best goddamn decision ive ever made.
For the first like, 3 or 4 months i still got periods, but they were way lighter and almost painless, it was so surprising cause i was looking down being like. Yep. Thats my blood i know im bleeding and that should hurt, it usually hurts but it doesnt right now. And after the few light periods i had i stopped having them. For 3 years. Now even though this thing has technically expired in my arm (i cant afford to have it taken out/replaced) and isnt viable as a contraceptive any more i still get a period like, once every 8 months or so, and theyre still light and painless. Hormone wize i feel great, i still get a bit emotionally intense and flip-floppy usually the 2 days before it comes but because it comes so rarely i know when its likely to happen based on how much more suddnly intense my moods are.
So, yeah im not trying to like demand you get the bar too, its really cool that youre feeling your bodys natural experience lately i think thats an awesome decision honestly. Just wanted to give my input as someone who does use it i think its a great option to consider if your vibe about it changes in a few months/years/whenever
Thanks for making this video i think its really important to talk about how menstruation and autism interact, i wish there had been more open chatty stuff like this when i was 12 and dying every month 😆💕
they're really annoying, but I've never minded my periods much, I've only ever gotten REALLY bad pain once but most of the time it's mild discomfort for 2 or 3 days, i think my SSRIs actually might've made them slightly better cuz i heard that happens for some people.
i got mine at 13, i don't remember my exact reaction to seeing blood in my underwear, but i quickly thought "oh yeah my mom told me about this i think? fuck am i gonna bleed forever?🙄" i asked my mom for pads and was relieved to learn in was only for a few days of the month lol...
i kinda feel like a jerk talking about my periods because they're just a mild inconvenience to me
I relate with pretty much everything you said. Especially the part about gynos. Thank you for your candor!! So glad you’re in a better place nowadays.
The underwear are definitely the way to go... I'd get nervous on occasion and double up on them, but they worked much better than any of the other options for nighttime (and also didn't feel like h*ll). Glad you tried them!
Just for me, my own experience. The insertion of the copper IUD I have was not too bad and definitely worth not having a kid. But yes it did hurt, and I felt terribly vulnerable during the procedure. You can always attempt to ask for some type of anesthetic like a local anesthetic
I had a copper IUD (so no hormones) for 10 years. It wasn’t until I got it out that I had realized that I had experienced more years with a period with an IUD than without. It was a frameless IUD, so getting it out was HORRID. Since getting it out, I’ve been using a period cup. It’s pretty handy.
For me, periods mean pretty bad PMSING. I always felt depressed before my period. Once my period started, I immediately felt better. But I still felt the cramping and it was distracting, I couldn't concentrate on my daily tasks, and I was really hungry. I would cry for no reason and be overdramatic. I also hated regular pads. I had one brand that I could tolerate more, but they were always itchy and uncomfortable. Now that I am in birth control, my period has been so much more bearable and less intense. I also switched to reusable cloth pads, and that was one of the best decisions I ever made. So much more comfortable and they cost so much less money on the long run.
AHey there, have you ever heard about pmdd? It’s the worse version of pms and your experience with depression and not being able to concentrate sounds a lot like pmdd, also feeling better with the period stating. Have a good one
I hate having periods. I am non-binary, so on top of sensory issues (the touch isn't too intense, but still), it makes me disphoric.
Though, since I've had a menstrual cup, it's much better. I only have to clean it in the morning and in the evening and I don't feel it at all.
I did use, before that, regular pads for years, since I couldn't get my head around having something inside me for such a long time. Tampons scare me, because it can cause many issues and can be stressful. I also used reusable pads, which I didn't know how to take good care of and they lost their softess... It's only after so many years that I discovered the cup. And after having penetrative sex for a while, I was more confortable with the idea of having something inside me, especially since it's much cleaner and confortable than tampons. And cheaper, way cheaper.
22:45 “you decorated your kid’s room this month” 🤣❤
I know my brother gets dizzy and nauseous if someone gets a cut, or he sees them bleed, but period stuff doesn't bother him.
I felt so bad about your recent period story also because I have menorrhagia (really excessive period bleeding with cramps), and I have to wear the largest and thickest size of pad when sleeping! It's the purple Always sleeping pads if you want to try them. Yes I have bleed throughs sometimes but it's much less with those. Also I find I'm the complete opposite of you when it comes to feelings about pads! Pads are the most comfortable option for me definitely :)
I find it funny I didn't see this video when you posted it and it just caught my eye in the side bar, and it says posted 9 months ago lol
Omg periods are so hard when you're autistic! For me (also autistic) period underwear have been fantastic 🙌 For bedtime, you might try like a Depends disposable type underwear. That's what I used postpartum, and they are MUCH more comfortable, much less plastic-y than a pad. They feel much more fabric-y, and more absorbent than period underwear for day 1 & 2 overnight 💛
i've gone in and out of having periods, I remember at your age wanting my periods back...that lasted about a year or two and then i went back to the mini pill / progesterone (not so much for BC as to keep the cramps and MASSIVE BLEEDING and extra hypermobility under control). I kept forgetting to take it on time though, so I got a Mirena, and that's kind of the perfect amount for me. I do highly recommend going without every once in awhile just to check in with your body though.
I feel like we could be good friends if we knew each other irl. You say all the right things
I use a diva cup. It’s really convenient and you only have to change it every 6 to 12 hours. You could also use reusable pads they don’t crinkle and they’re made of fabric and washable.
Any idea on how to convince a parent that their child should use reusable ones? My mam thinks it sounds gross ans unhygenic to use them, but normal pads are sensory hell for me (texture, noise, some are scented)
i am also autistic, and i HATED using pads because of the sensory issues involved 😰 i eventually figured out how to get tampons in comfortably, but it was still always a big ordeal that i HATED going through. i also would get really bad cramps and mood swings. later i came to learn that being autistic wasnt the only thing causing me such discomfort with my periods, it was also gender dysphoria, as i am trans. after being on testosterone, i havent had a period in years and feel so much better. but i did eventually switch to the period cup from tampons, before i started t, and those worked really well for me. i never had mess with one of those, andthey never caused the discomfort that tampons sometimes would. as for my experience with birth control, ive tried almost every type, but due to my severe period pains, i was too scared ro try an iud i currently have the arm implant, and its really not as bad as it sounds. they actually numb you before putting it in, they make a small incision and then insert it and bandage it. once it heals, its not too noticable. you can feel it right inder the skin, if you touch it, but for the most part, its in a pretty out of the way spot and i havent really have any issues with it
IUD owner here, the first time was hell. It felt like the closest thing to childbirth cramps I’d ever experienced. They don’t recommend you get one until AFTER you’ve had a kid cuz the insertion is less painful once your cervix gets stretched out. BUT, you CAN ask for numbing and it helped SOOOO much the second time. Don’t let your doctor refuse the numbing stuff and if they do, get a different doctor. Also I bled for three months straight after that. Could not wear any of the jeans I owned because tight pants would cause cramping. So fun. 🙃 I have to take 2 naproxen right when I feel a tiny baby cramp coming to prevent the big ones from happening.
I'm glad to see not only Paige but also the comments talking candidly about this. I feel like the least we can do is just talk about it. The most we can do is fund the heck out of more research and development into better and less invasive options for people with uteri, and better education for everybody on the subject. I didn't even know that there was a sperm-blocking injection - and this is the kind of stuff that I'd like to know about! Sign me the heck up!
Everything in the world has a solution, but only if society deems it a priority. If, god willing, I have children someday, I better know about this stuff.
I couldn’t take estrogen at all, when I had my last kid, they had to yank all my female guts, and I’m on T now, and people don’t understand how and why I do not care.. I just wanted to stay as long as I could with my kids. Idc about what I look like. I’m autistic as well.
Never clicked faster
Now in my 30s I decided to get the small "stick" that you get inserted in your upper arm. Had it for a year now, and only had 1 period since I got the implant, and it was a LOT milder than I was used to. For me personally it's been the best option other than getting my whole uterus removed, which I'm probably not allowed to do unless there's something wrong with it.
Yes the general population is often not aware of how fertility works especially in uterus owning bodies. The "non medical" form of prevention is called "Fertility Awareness Method." It can be quite involved especially in the beginning when getting to know your body and cycle patterns but once you get past the initial learning curve it can be as effective as the medical forms of birth control. This comment would become a novel if I let myself talk about how FAM works. Been using it myself for going on 7 years successfully (only been pregnant when husband and I actually wanted to have a baby) and I find human fertility cycles to be extremely fascinating! I also like that following FAM takes the guess work out of knowing exactly when my next period will start so I can be prepared.
I also had trouble with tampons. Didn't manage to get any in until I was in grad school and was fed up with the feeling of pads. Hated the tampons because I would get stomach aches after barely an hour of having it in. Discovered menstrual cups and that worked wonderfully for me. I'll use period underwear as a back up protection but the cups I loved going basically the whole day without needing to think much about my period. After having kids my body changed and cups no longer work for me so I switched to a disc. Works a LOT better for me. I also discovered reusable pads that actually feel comfortable so at the end of my period when it's just the annoying spotting I'll take the disc out and use the soft cloth pads.
There are mattress protectors at least to me don't seem to have the plastic feel/sound. Obviously I'm sure everyone will have different preferences there. When I was strictly using pads I would wear tighter fitting leggings to bed to help keep the pad exactly in place and snug. The compression also feels good to me when I'm cramping or bloated so bonus points in my book.
If you do manage to find period underwear that works for you, OMG, you're going to use them every time! Also autistic here and I got a set that works for me a couple of months ago. I've worn them for every period since and it's so much better than anything else I've worn.
I hate pads because they always make me feel itchy. I don't want to use tampons though because of the risk for toxic shock syndrome, so I just put up with it and wash when I can. I tried using a tampon one time and I felt like I hit what I call the wall, because it just wasn't going in. I gave up and just used pads.
I've only ever tried pads, luckily i don't find them too uncomfortable but one time i think i bruised myself with them, wearing pads always makes me feel like my underwear is falling down if I'm not wearing skintight pants, so i was just constantly pulling my pants up way too much, and it hurt for a day afterwards lol...
I wouldn't let the risk of TSS stop you from wearing tampons. It's incredibly rare and as long as you change your tampons within the recommended time your chances are even lower. Tampons take a lot of getting used to, and there are many tips and tricks on how to use them. In the end it's your choice whether to wear them or not, I'm not trying to convince you, just giving you more info to make an informed decision.
@@AccidentallyOnPurpose Oh, it's not really the tss, it's more I just can't figure out how to put the darn thing in. But, pads are just fine.
I strongly agree with you about period underwear! If you struggle with leaks overnight consider ordering boy short style period underwear as it will have more coverage over the situation to prevent leaks
Contraceptives and period management are so annoying, I just wish there was an easy, non-invasive, straightforward, pain free, mess free option. As someone who gave birth twice, I found particularly my 2nd one more doable than day 2 of some of my periods (though also harder and more painful in some way) because those hormones your body makes during childbirth come to your aide. Birth 1 was significantly more difficult, but that was because baby's head angle was off from where it needed to be for a smooth entrance into this world, and I got an epidural to deal with the effects of that situation on my body. When you have a period, there's a mess and then it tapers off, at least when you give birth you get rewarded with a whole baby ;-)
Enjoying your channel, keep up the good work!
😮I also just decided to stop hormonal BC a month ago. I actually feel so much better it is crazy. Have been on the pill since I was a teen so it is kind of nice not to have to worry about taking another pill every day ( and I have to be accurate or it made me feel so sick)
They make cloth mattress protectors. They have square ones that go over your sheets, and some that go under your sheets (they look like sheets but are not as comfortable). I recommend both. They are for elderly incontinence and potty training kids.
So 1st, this account belonged to my deceased husband, hence the male name ... I am post menopausal and realized I have been masking autism my whole life only about 5 years ago. Anyway there is a new product that I really wish had been around when I needed it, it is called a menstrual cup. I don't know from experience if they are as great as it seems they should be but if I still needed that type of product, I would definitely try it out.
Autistic male who has had a vasectomy here. It is a bit of a myth that they are reversible. In some cases they can be, but in general they should be considered permanent. This is one of those advertising stretched truths turned "fact". The other magic shot option that creates a temporary plug is still in testing and nowhere near being available, unfortunately.
This was incredibly helpful! I’m preparing my daughter, and I think your video is great
Omg I also had stomach aches ALL THE TIME as a kid and I thought it was “normal”
Edit: you should try menstrual cups!! You can’t feel it, it’s a million times better than a tampon, and can’t shift out of position when you’re sleeping. Once trying out the cup I can’t even fathom using a pad.
Yes! Menstrual cup all the way!
I’d love to hear an update from you once your back to regular and if you find anything to combat the sensory HELL of periods. I’ve been on the pill since i was 14 (19 now) and i hate how it makes me feel but i don’t think i can deal with a period rn either…
I used to have nausea and horrible headaches EVERY DAY (from age 9 to 18) and I would see specialists and they could never find anything wrong - think it was the undiagnosed autism causing extreme stress - got better as an adult, still get nauseous though.
a tip with nighttime period underwear is to where some comfy but tight ish shorts to keep the underwear in place and not move out of the way 👍
I haven't had a real period in like 4 years because of continuous birth control. It's to the point where now if I have breakthrough bleeding I feel like I'm 13 again trying to figure out wtf I'm supposed to do. I hate pads so fucking much, they feel horrible. Tampons are fine. Menstrual cups were the second best thing after not having a period at all, no leaks, no pads or liners, no strings, less cramps. A fucking god send.
I've also had the "I wish there was a machine that could suck all of this out of me and be done." Thought.
Girl, I totally laughed my ass off on the IUD story. I did the exact same. Not poop because, scared to poop it out xD
🫣 me when you aptly explained how they insert the IUD. I got mine done under general anaesthesia (cause they had to do other stuff too) she was on an epidural pain pump for 3 days after. So um i escaped that experience. But my IUD made things worse, horrific pain, only lasted 8 months and then had my GP remove it. The next gynaecology appt they had the GALL to ask if i wanted to try it again...... 🙃 no. I'm getting a total hysterectomy in 6 months, I'm 31 and it took 5 years of fighting the system and doctors to agree to it.
Yelling that you’re the bestest and I already preordered the book! Wooo! 🎉❤
Completely the same story, I have my IUD out for a year and for the first time in my life I'm regular. But I have really bad PMS which makes me depressed for 1-2 weeks a month, even though I know it will happen. But I really, REALLY don't want to go back on birth control. I'm thinking of looking into supplements instead, and this is coming from a literal doctor lol. And total agree on the period underwear being life changing!
"Ok mama!!! I understand, you decorated your kid's room this month!!!" 🤣🤣🤣🤣🤣🤣🤣 💀
I’m only a minute in so far but I’m already in the comments to say I’m totally stealing “getting 2 birds stoned at once” that is fricken hilarious Paige!! 🤣🤣🤣
A topic i can contribute on yay. Its wonderful to hear you talk and share your experiences!
I do think its an important conversation to have, and probably my experience is a drop in the ocean but anyway.
I got my period with 8, like super early. No one expected it and i didnt have the "talk" with me, but that was fine. I always been so into biology and medicine, i was a nerdy kid, so i already knew what was up. Humans are so quickly after all for menstruating.
I got home one day, went to the toilet and there was blood everywhere in my underwear, on me, everywhere. I call my grandma who called my aunt, and my aunt had emergency pads. So i used those. Everyone was so excited and i was like TIRED and wanted to just sleep and be left on my own. I didnt find the pad situation confusing, it had instructions on the packaging, but my family was like flipping out for no reason.
I was a chubby kid, so maybe thats why i got my period this early? definitely aint that common.
I had the most excruciating pain from age 8 - 16. But luckily for me it was on a very 30 day cycle. Not even 28 but exactly 30. So it was always the exact same day each month. Then it was 10 days of pure misery and blood splather. Like i would bleed so much i needed a pad change every few but i hated and still HATE the idea of anything inside me. Baby, IUD, tampon - NOPE. Sex toys are ok during the act, but all those other things NAHAHH.
I got birth control at age 16 mostly for the birth-control aspect. Because i been told a period is supposed to hurt, and its supposed to make you bedridden and zombie brained for 5-7days. And then i took birth control and like WOW i could function a whole month. I didnt have brain fog for a week, i didnt bleed through anything dear to me, i didnt need to take 4 ibuprofens a day to survive the pain. I could attend school 4 weeks a month. Blessed. The pill i got didnt have placebo, it just had 3 weeks of pills and then you would not take it for a week. Its pretty common here. And i fully agree, i been perfect BC candidate. I took it every day at the exact same time, never missed one, never forgot, never took it on any other time. I never took drugs or alcohol, never had digestive issues. Age 16 to now age 30 never missed a single dose.
I got migraines as a child but rarely, and no one ever told me its contraindicative of BC. I even seen a neurologist for my migraines a while back, and he also said nothing. And my gynecologist knew and still said nothing. But i do have a combi pill "low low" as you called it here. It mostly has gastrogen and only a bit estrogen. I wonder if that is why they didnt mention it?
I do think it works just fine. I had lighter periods, no brain fog, barely any pain for over a decade. In 2018 i completely lost my period for a while. I think i was anemic and hence didnt get my period? I now have the lightest period the earth has seen, one day of minimal bleeding and a tiny bit of cramps. When i dont have a proper period i get paranoid and have to take pregnancy tests out of said paranoia. I really truly do not want to be pregnant EVER.
i have health issues but i am very happy with BC and i dont want any of the alternatives as i think they are way worse than some hormones
i dont miss having a cycle, i feel like i was a slave to my hormones. Extremely aroused a week prior my period, i think PMS too, then too tired to function for a week during my period. After i maybe was anemic, i didnt quite feel right either. So i only had about 1/4 weeks where i functioned somewhat normal. So I dont miss having a cycle at all.
i think i have endometriosis too, because as much pain as i went through and all the blood dont seem normal at all. And BC stopped both the pain and the bleeding.
Hey if you’re grossed out by blood because of the texture or thinking about it, you don’t need to grow up it’s normal that you have blood inside you but it isn’t supposed to be on the outside and I get that. (Unless ur on ur period)
I think she just said that because there are so many people who are grossed out by periods (usually people without uterus’s) and she was trying to break down the stigma that can be harmful. But your right it is vaild to not like blood.
Periods underwear/panties changed my nightmare periods. Here in Brazil we have one to sleep, it's larger. Try to find it in Canada, maybe it helps. Your videos are amazing! ❤
I wish more people talked about the effects of the pill. This was the best conversation.
Period underwear was game changing for me. I have a variety of brands and absorbancy levels so that I have ones to use for night with heaviest levels
bed layers are a sensory acceptable vibe: plastic then, plastic with a topper until u can't hear it anymore then sheets
periods are also (obviously) sensory hell for me but like i always find that i’m just not aware of my sensory issues at all like if i don’t like a sensation or noise or anything then i don’t usually realise and therefore don’t change my behaviour to work around it. i use pads bc i am genuinely too much of a pussy to insert anything UP THERE and i’m just used to pads even though THE FEELING IS DISGUSTING i just won’t do anything different on my period bc i just won’t
Honestly, I would happily switch body with a uterus owner in order to experience this process. I would love to be able to understand what is often said about periods, the insight, I feel, would make me a better human, especially given I see myself as genderfluid these days. All strength to you.
this is so important to talk about… being an autistic person with periods is so hard :(
My lunch lady in Catholic grade school was sent to the Gulag at 8. She escaped at 18. Didn't get hers til she was 20. Had no idea what was happening.
maybe one of those splash blankets could help the bedtime situation? so its just one thing to wash and protects everything else but it’s soft
I would use adult pull ups which works better than the disposable & reusable period undies (that mean less laundry). It is because I’m highly allergic to fragrances
I learned from a friend to put a towel under my butt when I go to sleep on my period. Even if slides away as I move in my sleep, at least it's less anxiety for me. And cotton-y pads are my choise. No more of that plastic-plastic hell that they made in my teens and still make today.