HOLY CRAP. Everything finally makes sense. Honestly the meltdowns and insane sensory overload during the luteal phase of my period was what lead me to get mental health help, and that's ultimately what lead me to discover that I'm autistic. I had no idea there was a SUBSTANTIAL link between PMDD and ASD. I'm getting that awesome excitement that comes from connected dots!!! I love that now that I know I'm autistic I've stopped trying to fix myself and instead I'm trying to understand myself and it's fixed everything.
Gods I wish I'd found you sooner, and I'm fighting tears after watching this. I was 48 when I finally realized I was on the spectrum, and 50 when I recognized ADHD. I'm going on 52 now, and have fought with terrible cycles since I was 9. I go through EVERYTHING you listed, and honestly thought I was alone in how badly it hit me. I also have PMDD, PCOS, and hypothyroidism, and was prescribed a low dose of prozac to help manage the cyclical depression, panic, and anxiety. All my life I was treated like I was just being melodramatic, or playing it up for attention or to get out of school, and that only added to my self-loathing and stress and resentment of my own body. I honestly never connected the dots between ASD and my PMDD for why I was feeling everyhing so intensely, and just got in the habit of either not saying anything (because I expected to be shut down), or constantly apologize for my "weakness" when I felt overwhelmed. But I knew something was wrong when my depressive episodes started getting worse, and after 6 months of tracking symptoms I approached my doc with the documentation. I was literally shaking expecting to again be dismissed and ignored, but he not only believed me, he thanked me for being diligent in tracking. It was so incredibly validating. I was on hormonal birth control for over a decade to try and regulate my cycles, and only stopped taking it last November. My body is still adjusting to that change, and FINALLY stopped with the bleeding as of January. Fingers crossed that menopause is finally here, but I was told it has to have stopped completely for 12 months to be considered true menopause. I mention this because despite the blessed lack of bleeding, I still feel the anxiety and hormonal shifts, and have been in a heightened state of "just in case..." ever since.
@Heatherwind I understand & have suffered similarly. I don’t know why more doctors don’t thoroughly check hormones. Perhaps looking into bio identical hormones getting your levels checked by an integrative provider might be useful (I’m not a doctor, just have found viable options & answers from this approach.)
Love your videos. After a long and difficult adolescence and early adulthood, my daughter received an official diagnosis at age 25. My suggestion is the impact of autism, even high functioning autism, on a sibling. My younger daughter spent years defending her sister against bullying, and standing up for her even in spite of the most cringe inducing behavior. Now they don’t speak (and live in the same house). One crisis too many about a year ago, before the diagnosis. I’ve been advised to leave it, but I can’t help but feel if she were to watch some of your videos, and other content providers, she would understand her sister’s behavior, so much better! Anyway, your videos have been very helpful to this anxious mom. Thank you!
I'm new to not experiencing the bleeding But do experience the emotional intensity even moreso during the time frame and the anxiety etc too I Greatly appreciate you sharing this comment
Thank you for talking about periods! I've always felt periods are a burden for me, even when I started reading about feminism and learn how to love more my body how it is. Now, diagnosed with autism, I feel that finally I am accepting me for who I am and that includes me hating my periods and it's ok, I'm not less feminist for that. Also, recently I understood that I dealt all my life with PMDD, which became very clear how I am not a difficult person, I am just more sensitive to the changes of hormones in my body and that affects how I feel, my humor and how I express myself to others. Using medication for anxiety (fluoxetine) has been helpful to me in this scenario too (PMDD). EDIT: when I first commented I was in the middle of the video, so, the part about feminism, isn't because of #9 hack, which is an amazing opportunity to make peace with ourselves
I can’t even use birth control because it makes me throw up. Hormone have a strong effect. They’re also so painful, I have to take ibuprofen (which gives me an instant stomach ache) and heating pads. I can’t do much but lie down with the pain those first couple days. The days before and the several days after the heavy days are exhausting. It sucks having this 7-10 days every month. I also hate having to schedule vacations around it. I never want to go on vacation during a period. The whole vacation is worthless.
I switched to a menstrual cup several years ago and my only complaint about it was the stem sticking off the bottom of it (one is just very aware of it at times). Then I heard from another autistic person that they also make menstrual cups with a loop instead of a stem so I bought one and I'm super excited about it. At the moment, I'm still on a vacation from my cycle because my daughter was just born nine months ago so I haven't used it yet. I wish I could report whether or not it makes a difference. Maybe some other cup fan out there knows and could reply. Incidentally, one of my big "aha" moments in discovering I'm on the spectrum was reading another autistic person's experience with puberty and realizing that my experience was just like that. I handled the onset of my period in an extremely autistic way... And now that I'm in my mid-40's and looking at the onset of menopause in the years to come, I get to do it all again 😂
This information applies to people without autism too, I wish you went into detail on things that would help autistic people. Every girl should already know about heating pads, hydration, exercise, talking with a friend. I wish you provided other information that we didn't already know.
Thanks for this video. I didn't even realise PMDD and Autism had a connection. I know I have PMDD even though it's undiagnosed and I was diagnosed with ASD 2 years ago. It finally makes sense! 😭 Secondly: I have an IUD and the time it took my body get used to it was frustrating. Increased cramps and spotting for about 2 months but it's finally settling. What I'm noticing now is that my PMDD emotional symptoms are prolonged and also the cramping before my period starts sooner. Less bleeding though. So there are benefits for me but comes at a price. This is just my experience so far (can't speak for others). I'm giving it at least a year to see how I go. Thirdly: I was looking a while ago at period underwear but it's pretty expensive so actually I found reusable pads which work the same way except you just put them on like a pad and can wash and use again. These were cheaper and you get more in a bundle. Thanks for all of your suggestions! Hope some of my anecdotes help! ❤️
I've finally found reliable and comfy ways to manage my monthly bleeds and I'm over the moon about it! I use both "period panties" (from Your Moon Time) and overnight reusable menstrual pads (snap around the center of underwear) - overnight size b/c they're extra long. The pads esp hold more than disposables ever did for me. For both, rinse out until water runs clear (a bit gross, but no more so than dealing with disposables), then stick in machine wash regular cycle, (no fabric softeners or bleach), pull out to hang dry. Super easy, high recommendation! I can't tell enough people about this. B/c diva cups and similar never worked for me either. I'm so glad there are other options now!
Something that really helped me with the pain is Mayan Abdominal massage. My cramps have always been awful. After one session and doing a daily 10 minute self-massage she taught me, I had zero pain during my period. Pretty amazing. I'd highly recommend it. I find that full spectrum CBD helps significantly with the mood problems, though it doesn't eliminate them. It just makes it easier for me to not get totally lost in the overwhelm of feels. I still haven't found a solution I like for dealing with the blood. I don't like the cup or the sensation of the pads. After watching an Abby Cox video about historical period care, I'm about to try making myself an 18th century period apron out of linen. I like that it would keep the blood farther away from me so I'm not feeling the sticky wet sensation. Plus linen is so breathable, I feel like that would be nicer than the pads or underwear that have plastic backing or whatnot. Can't stand wearing plastic stuff. I love the idea of an easy to use cycle app, but I'd be a bit wary since those of us in the U.S. don't have the right to bodily autonomy anymore. I don't want information about my cycle available to anyone. I feel safer using paper charts. I've been using the charting method from the book Take Charge of Your Fertility for years and it's nice because I can usually tell when my period is about to actually start because my waking temperature changes. They've got printable charts online for it.
The best solution I've found for period mess is actually a homemade cotton pad. It feels like regular clothes, is super absorbent, and can just be thrown in the washer/dryer. It's also more environmentally friendly than anything plastic.
I use washable cotton panty liners when I need any, and they are indeed comfy. (But during a Niagara fall days, any kind of pad will inevitably feel like a wet diaper, and a cup is the solution with least sensory issues then IMHO.)
If you’re having PMDD or mid-cycle pain or any dis-ease in any stage of your cycle, yes, talk to your doctor. Then take what they say and compare to the two most brilliant books on the topic: read Taking Charge of Your Fertility by Toni Weschler (this is SO not just for trying to conceive-it covers all the reproductive health topics you didn’t get taught in school) and WomanCode by Alissa Vitti. For supporting female vitality, whether Autie or not, these books rock. I’ve also started reading Spectrum Women and I believe there’s a dedicated chapter for hormone health, and all the health info is edited by an autistic doctor who specializes in autism in females, Dr. Michelle Garnett.
I use a menstrual cup and love it. I clean it out in the shower so everything gets immediately washed off and there isn’t icky to deal with. I don’t feel it, I don’t smell it all day, I don’t feel that occasional waterfall/flood, and in fact sometimes I completely forget I’m on my period. I had started getting some pretty serious PMS symptoms pretty much when I turned 30 and my doctor put me on continuous birth control for a year because she said “there’s no need for you to have a period if you don’t want one.” I thought it was amazing at first, and then I tried loosing weight and i just couldn’t at all. Stopped it and within a few weeks I started loosing weight again (along with other things I’d been doing along the way). So now Im having periods again and am not looking forward to managing it again.
I used to have extremely painful periods as well (shaking, vomiting etc) but several realizations have helped me tremendously. First, I noticed a huge drop in pain when I cut out grains and sugar and cleaned up my diet. I think with all the extra food sensitivities we have it makes sense that that sensitivity would carry over into periods (pain/inflammation) as well. (Turns out wheat is a huge migraine trigger for me too, soooo better all around!) Second, the more I move the less pain I have to the point where I'm surprised I've gotten my period because I don't have any painful indicators. I am a Katy Bowman fan girl, and her article "menstruation is a movement" really does a great job explaining why movement can help alleviate menstrual pain.
this is great info!! and nutrition is a super important issue I didn't get around to covering. I'm super opinionated on that issue and totally agree food sensitivities can play a significant part in menstrual pain.
I’m on continuous birth control. I don’t have periods anymore and it is heaven. I absolutely hated the feeling of the little gushes I would get when I stood up. That was the biggest issue for me. Well that and the pain. I could take some ibuprofen and the pain would never really go away. It would just lessen a bit.
BTW, there are newer discs on the market that are supposed to help with the mess. My favorite is the Hello Disc, which has a pull tab to help make removal less messy.
I'm on the spectrum and I have pmdd and pcos. It's so validating to know why I've suffered all these years. But now, at 42, I'm dealing with an even bigger beast. Early menopause 😖🥺😭 the kind where I bleed for months on end and experience spontaneous rage. My workday is a literal nightmare.
I'm all for science, just wanted to say that first. And now this: Since I cut coffein out of my diet I've got almost no pain nor PMS at all. It's quite striking actually! I know that many others have experienced this too, so I'd say try it! The effect comes kind of immediately, after just a few weeks. /Nina
As someone who is only recently realized they were on the spectrum at 39 years old, I am beyond grateful for your channel. I have been not only misdiagnosed for so long, but also have had to do all of my own research to figure me out. Until I realized I was Autistic, I thought I had PMDD. Now I realize I have Autism and also PME, which exacerbates any other issue I have… so autistic traits are heightened… my asthma… my trauma responses… it just all makes sooo much sense. Thank you so much for your channel. I’m thinking of getting my own going soon or at least Instagram and maybe podcast too. 💕
I never need a reminder before my period because I get so many symptoms 1/2 weeks in advance! My periods are the worst :( never heard of pmdd befoe today but after looking up the details, my sympoms are making a lot of sense
Even though that is behind me, I lived with severe PMS!!! Pain and emotional distress was very disruptive. At the end it was brutal. Perimenopause was a real challenge. I swear I was allergic to my own hormones.
Just a word of warning on anything that contains valerian root--just be careful not to over do it. For me personally, during the worst bout of insomnia I had lasting a couple months I found it to be very helpful initially. However, I started to need more and more of it and I started experiencing negative side effects like increased anxiety and heart rate, especially towards bedtime when I usually took it. It's not bad in moderation or taking intermittently, just be aware of overdoing.
I'm autistic, am 29 years old, and I still get periods. I just started my second one. Now I feel disgusted at my period blood clots and the period blood smells because they make me smell like my cervix. My last period blood clot was the size of a roach.😫😫😫😫😫
Not on the spectrum but my daughter is and she is at that age when things are changing 😢 Thanks for the pointers, I'll do whatever needed to support her. She already loved the heating pad, so that's a win👍
I'm autistic and I have PMDD. I'm thankful to know that I'm not alone. I have this severe form of PMS for 19 years and didn't know I have it until my late teens to early 20s. Now, at age 30, I've figured out better ways to cope with these emotional ups and downs during that time of the month and stimming does help.
You and (the RUclips channel) How to ADHD should get together and do a series for women with Autism and ADHD/ADD. You two would be wonderful together. Both helpful and relatable!!
That sucks. I had an endometrial ablation in my 20’s through Novasure because I had the worst issues. It took three months of shedding lining of the uterus after the procedure before it stopped and now it’s been 16 years since I’ve been liberated with NO periods ever again. It was the best choice of my entire life. Having a period was the worst thing of my entire life. I never wanted to have children so that was the best choice I ever made of my life. No pain. No periods. No bloating. No hormone replacement. I don’t relate to girls that talk complain about their periods and I rarely think about it. Sometimes i get repulsed by girls talking about it now because I’m like a guy now that I don’t have one of those. I go on vacations and never have to think about the inconvenience of bleeding all over myself, chairs, beds… omg 🎉my insurance plan paid for my procedure too.
Thank you for this video. I’ve been diagnosed 2 years age (at 38) and I struggle a lot with my period. (But not with cramps luckily.). The link with the heavier form of pms is certainly something I’m going to look in to.
This was a really insightful video. Tracking apps are helpful to remind me to put supplies in my handbag and such. Does anyone else feel disconnected to their body during their period? I feel it's like an entity I have to babysit and keep going until my period is done and then I'm connected again to my body. I often feel there's me, my brain and my body and most of the time we're all connected but when the wheels fall off or I can't handle something parts can feel disconnected like when on my period for example.
@@MomontheSpectrum oh wow. That's really interesting. I think I'm thrown off every month. And sometimes it's a body disconnect and sometimes it's that feeling. The unpredictability. And it feels like an unreasonable unpredictability. I'm really enjoying your videos. Thank you for your content.
Oh my god, THANK YOU. I never knew of the existence of pmdd and it explains SO MUCH. I know at least two other women on the spectrum with more of less the same symptoms. It even explains why I had a dysphoric milk ejection reflex when trying to breastfeed my baby. It is such a relief to know that I am not crazy!
Ladies, a heads-up! As menopause nears, your period will get much, much heavier! It does not get lighter! Cramps get worse too. I wish I had known this, so I am spreading the word. And who can I talk to about this, because it is NOT FAIR.
Thanks for the warning!! I’m 44 and I think I’m pre-menopause and I have also noticed my periods are heavier and my cramps are far worse than before! How long does it last?!
I learned about pmdd 2 years ago while trying to figure out why I'm so crazy around 10 days before my period, I don't have much physical symptoms of pms but my mood has been like nuclear explosion. I finally got it manageable by taking 5htp, but I learned that your body can get "used to it" that it doesn't help much anymore in long term. So when I know I ovulated I start taking just 50mg of 5htp every night, omg I can't express how much gratitude I have for this supplement. It probably save me from dying alone because of my insanity from pmdd destructing my relationship and friendships (and very few to begin with)
wow thank you so much for this video! im 32 yo and just recently realized im autistic so im self diagnosed for now, ive been doing extent research and your channel has been so helpful, after watching you and more autistic creators, doctors and scientists i sat down yesterday and wrote about 8 pages of traits that i have and im actually surprised that it affects periods too because i know i suffer from pmdd but now it all just so much sense, im not crazy, im not less, im just autistic. saving up to get an official diagnosis so i can get more official help but to be honest all the information to help myself is out here and im here for it so thank you so much.
You look super festive, love it! ❤ My husband got me a Fitbit smartwatch for my birthday and it's pretty amazing. It tracks steps, heartrate, and if you wear it to bed it tracks your sleep and even tells you stages of sleep you are in with a graph. It has the Find My Phone feature (I misplace it allll the time 🤣) and a period tracker too! Definitely helps me stay more mindful! Great topic! I love watching your videos, I always walk away with a smile! 😊
MY TOPIC. Thanks a lot for doing the research on this, I will binge read the science! I have struggled a lot with my period ever since I first got it - nightmare level struggles, which doctors did not take seriously. I got diagnosed with endometriosis last year; but if I hadn't gone out of my way to pay specialists I still wouldn't know I have it. So ladies, think about that possibility as well. As for birth control - I got it to battle my symptoms, then switching to an endometriosis medication. The endo meds gave me incredible quality of life as I had never known before, my background depression was GONE and I could live pain free! But the side effects were so bad I could barely walk from one room to the other (constant dizziness, fell down in public a few times because of it) which resulted in massive anxiety ("OH GOD I CANNOT WALK I AM FALLING AAAAAH!"). Additionally they made me even more light sensitive than I already am, any tiny source of light would already claw screeching at my brain. So... yeah. I had to get off those meds, sadly. Now looking for working alternatives. So hormones don't necessarily make you depressed, but can have a whole other host of disabling side effects. Take care, everyone!
Ive struggled with PMDD for so long and I am just now getting testing for ASD (almost 30 years old)! Thank you for talking about this! The best thing for my PMDD personally has been drosperinone based birth control pills like Yaz! Seriously has made the world of a difference. I tried other hormones but Yaz has been amazing for me. I still have symptoms but im able to function and take care of myself - which i wouldnt be able to do without it. Depo shots were awful for my PMDD and SSRIs didnt work either. Exercise, good sleep, and proper hormones can really help manage. I hope everyone pushes for what they need! I went without proper treatment for so long😢
Thanks for posting.... This video honestly hit me like a brick, that 92% with pmdd is wild... its the final piece of the puzzle I have been going through a diagnosis journey currently, and all the co-morbidities that I have make life and periods especially bad, and I've just begun to realise how much struggle I've actually gone through....😮😢😮💨... I'm surprised how I managed to get through it all thinking it was a normal life, that it's supposed to be this hard and that I just wasn't trying hard enough 😵... Also, the comments on this video are very validating, it's good to know that I'm not the only one who's experienced all of this...
31 years old and this year I've found out that I have both ASD and PMDD! Thank god I started tracking my cycles and moods, because I realized that I only dislike my husband during my luteal phase. I found that we only ever argue during my "hell week" and literally to the day every month I am logging the arguments.
For everyone considering birth control to not have a period and is afraid of mood issues: Sometimes it can help. I have much less anxiety since I deal with birth control for a medical issue, which makes sense, since the one I take actually replaces most of the hormones my body makes. So I have CONSTANT hormone levels instead of monthly swings.
Also no PMS anymore. There are other issues I have with BC but all in all it's much easier to deal with life since I take it and it might be worth a try for some of you
Period underwear are the only thing I can use now, I used to use L and anything organic really because of sensitivity to most chemicals. But I also had to try many options because of pinching or sizing and ick factor, had to get them in black and a separate “wash bag” for them.
I had such a hard time with my period! I had male doctors that didn’t believe me. I had clots the size of quarters and my husband even started getting scared for me. It wasn’t until my family doctor saw what was going on and said “this isn’t normal.” She diagnosed me with PCOS and I’ve been getting regular shots to stop my periods that I feel a whole lot better. I’m also hypothyroidism but that’s for a whole other Monster when I was 3-5.
You said insert into the vagina, and I went 😬 lol. So interesting to learn about autism and periods. I am also curious about birth control and autism because my experience with birth control has been terrible!
I actually prefer menstrual cups to pads and tampons. The smells really bother me, and once I get use to the cup I feel like to helps with the cramps. My period triggers my migraines each month, which is no fun.
Thankfully I don't have PMDD, barely even PMS. But the first 2 days... Pain level 4-7, almost 8 on the scale 0-10. Sometimes pain meds stop working before I can take next ones...and I really have to take them with the clock! And when I was a teen, I wasn't really realising how much I actually need. Only learned that as a middle-aged woman.
As a nurse/ midwife I would be concerned re the insertion of any foreign substance up your vagina. Oops ...sounds funny! Tampons can even cause ascending infection for some if you do not remove soiled tampon regularily. Good hygien is essential! Re the cups....you run the risk of infection unless you keep aseptic technique....wash hands and insure cups are aseptic before inserting them. The safest still is clean sanitary towels. Congrats on your amazing channell.
This is a great topic that I bet is hard to find more conversation on. One thing I’m struggling with now related to this is how to find pain management options that don’t involve hormonal birth control! Like you mention, emotional regulation is already difficult enough being autistic! I don’t want to add another factor in the mix. Still searching for answers there, but that supplement seems like a helpful addition! Thank you :)
I'm 49, I'm in the perimenopause stage. The menstrual pain was worse during my teens-30s. In my 40s the pain isn't that bad, mostly none existent. My issue had always been mood swings which is why they diagnosed me with pmdd, they did Rx HRT in my 40s but I didn't really see a difference with my mood swings so I stopped taking it.
I love reusable period underwear. I may have to change them extra on my heavy flow days but other than that it’s just like wearing underwear. You can literally just throw them in the laundry with other dark or colored clothes. If you leave them on too long they start to smell but that’s a good reminder for me to change them. With perfumed pads I think I would always leave them on too long on my light flow days and that probably wasn’t healthy. From my “research” you should change them every 6-12 hours at least. (CAVEAT) if you don’t have a washing machine where you live then dealing with these will SUCK.
Hi, if you are looking for environmental friendly options, I really recommend Etam period panties. They are not "stilish" or cute but they are good quality different absorption levels. I use the high absorber ones on the first 2 days and during night and the medium absorbing in the rest of the time. They seem bulky but once I tried them on, they were much more comfortable and less noticeable than even a light pad. Usually with pads I would hear their plastic noise while walking especially when wearing skirts and they would constantly move around and leaking at night or while I was sitting for long periods of time e.g. at work. And with these panties I solved all my problems! The price is not cheap but they are guaranteed to last 5 years and I've been wearing them for a year now and they are still perfect. I also calculated the cost of buying pads every month compared with the initial investment of buying these panties and they are actually cheaper than buying pads for a year. If you are unsure about period panties, don't buy a dozen, just one, try it during your period, and check if it works for you. I started lime this and after 2 months of trying I bought the rest that I needed.
My PMS is horrendous in itself and makes my symptoms much worse. I didn't realise how draining managing the emotional roller-coaster was until I got a mirena IUD which stopped my periods all together. I did because it's extremely reliable long lasting birth control but it literally changed my life in how much it improved my mental health. I struggled with oral contraceptives because they negatively affected my mood but the IUD is such low dose it doesn't have that affect for me. I wish I'd done it 20 years ago!
I also don't care for menstrual discs - messy and weird. the disposable discs are actually designed to allow period sex, which isn't a high priority for me haha, too risky/stressful. But menstrual cups, on the other hand, have been a game changer for me (my personal favorite is the June cup - partly because of a more comfortable stem, which I didn't like about the Diva cup.) I think it's way less messy than pads and tampons and the only time I have to see evidence that I'm on my period is when I have to empty and rinse it. That's more frequent the first day or two when my flow is heavy but after that I barely have to notice it's there, emptying once in the evening with my shower. It's helped me be less grossed out by the whole thing because the amount of blood seems a lot less, limited to how much the cup can hold rather than soaking and spreading out into every bit of a pad. And it makes me feel more in control of and understanding of how my body works. I've also heard that some women feel better when they switch because the cup doesn't have the ingredients often added in pads and tampons that aren't actually good for our bodies. (I haven't yet researched whether that is actually true or not). No shame on anyone who can't handle dealing with a cup or disc due to the sensory discomfort, just to note that for some autistic women like myself it's significantly limited that sensory discomfort and is worth at least trying. There's a slight learning curve in getting comfortable with inserting and removing it securely, but for me it's been so worth it for regaining a greater sense of agency with my body. Also saved me a lot in pad/tampon money :).
Thanks for this - great info! It was very difficult to hear this vid on my phone (no headphones) bc volume at max was so low. I think your newer vids have more consistent/louder volume, & not sure u can adjust on older ones, but just a suggestion! (Ppl can always turn volume down, but can't go beyond max)
The whole concept of a cup or disk is sooooooo gross to me. I can't even bring myself to try it. Can't do tampons either, feels too weird. I use pads. Always have. But I can only tolerate a specific brand cause they're thin enough but still super absorbent, and especially cause they're loooong, not stupid short ones. Also, no wings for me, they bug my thighs. As I've gotten older (40 now) my cramps and back pain have decreased significantly from what they were when i was in my late teens (got my period at 15, almost 16) and college. I used to have the most wicked backaches when I was younger, and the nausea the first day or so was unreal. In college through late 20s/early 30s, I had such horrible cramps also, though the backaches let up a bit so they were at least bearable, and the nausea was more bearable too and not as often. I also had horrible, horrible IBS which would get waaay worse before and the first days of my period. Nowadays, I can always count on a crap-ton of pooping the day or two leading up to and the first day or two of my period, but my gastro symptoms aren't bad at all. I get cramps but they're manageable. One thing that's weird is that my period is a lot heavier but also a day or two shorter than when I was younger.
This is so helpful and I feel like I can relate. Without my IUD I have heavy periods and I have cramps a lot before and during. My PMS gets bad and overwhelming and it can cause autistic meltdowns when I’m not getting my needs met (got mad at my mom once because she asked me to do laundry and I was in pain and exhausted and I snapped). Over the years I’ve tried tampons and pads. I like the menstrual cup (blood doesn’t bother me). I don’t like tampons but now that my periods are lighter I use pads or panty liners. I have considered getting endometrial ablation in the next few years because my periods are getting worse and I know it’s going to be worse in my 40’s. Until then I like my IUD-it does hurt like hell but I have high pain tolerance and I was able to withstand it (I know a lot of people can’t).
I really like this video, as a person with autism and pmdd I just wanted throw one thing out there. More than anything else pmdd effects peoples mental health, mood swings depression and suicidal thoughts being some of the hallmarks. I have found it sooo frustrating for doctors to call it just severe pms. The only other thing I wanted to say is for my pmdd I take bc pill called Slynd, but in general one of the ways of helping pmdd (the mood specifically) is bc although bc effects your emotions after about two months it regulates your emotions becasue it regulats your hormones and pmdd is a effect of drastic changes in hormones so bc can definitely help mood swing etc.
I have worn tampons before, but they were so painful to wear. I would have them inserted correctly, but I could still feel them. Thankfully, birth control has really lightened my period. I still change them more than I really need to, but it’s the whole sensory overload that makes them feel so disgusting if I wear them for a long time. My cramps are nowhere near as bad as they used to be (the pain would radiate to my back). The best part about birth control is knowing exactly when my period will start and delaying it by a week if I’m going on vacation.
Oh my goodness.... so that's why for almost 2 weeks out of the month I feel like I am in total and absolute disrepair. Everyone says when I am happy it's like I am a golden retriever and everyone wants me around because I make them feel good. However, for almost a week to a week and a half of the month, I seclude myself in my home and only go out if I need to because I literally just can't function without either being angry or in tears. It feels like there is no light at the end of the tunnel. Younger me would have just made a big fuss about how I wanted to be unalive but now as an adult I just think 🤔 "Oh yeah, it's that time where everything looks like it's going downhill for about a week" Which is where doctors diagnosed me with BPD when I was a teen. I didn't need meds, I just needed someone to reassure me the feelings would pass and even if I don't feel okay, that I would be okay and they are there for me if I need help and cuddles. Good lord, this makes so much sense now. I have to tell my husband.
When younger, I couldn't understand how all women have the same pain level as me AND were able to be active, motivated, go to work and/or school. Turns out: not all women have excruciating pain like me after all. Go figure!! I didn't figure that one out till I was in my 20's.
I hope this isn’t offensive or offends anyone but I’m so glad that I am a man 👨 on the autistic spectrum so I don’t have to deal with these extra issues of autism. It is hard enough to be on the autistic spectrum as a man 👨
Wow. I suspect I have autism and I had pmdd. When I was younger I remember extreme pain and nausea. I unknowingly treated with birth control until my body could handle them. 10 months of daily vomiting with pills and 18 months of whole body hives with depo. I ended up treating with surgery. Wish I had seen this sooner. Great video!
I have suffered my whole life from cramps. I've complained to my nurse practitioner and they checked me for fibroids but i have none. They say im normal. I never knew I may have PMDD. Also like you, my ADD is increasing and my overall autistic symtoms may be increasing or im much more aware of them since ive been single for a few years and much more intuned with myself. the ADD is most bothersome to me right now and i'm becoming more forgetful. It frustrates and scares me. I have anxiety from forgetting things.
I did some yoga today I had pain and was super crabby I stayed away from ppl and laid down in the back of my hubby”s truck I got snuggly. I’m here just relaxing on the verge of menopause was hoping it was done lol. Thanks for your advice I’m also on the autism spectrum ❤️❤️❤️.
I've been so extra sensitive about any smells from me ... I have PMDD, and I've gone into the emergency room for pain, and my behavior was out of control... Now that I know how serious I get. I baby myself, and I don't talk to anyone, really.
I am trying the Hello disc… a lot less mess than other discs if you are looking for one as it has a pull tab you can wear in several positions. Worked really well last month for me.
I am very sensitive to hormones. I can’t use birth control because I throw up and constantly have a headache. I have to take ibuprofen (instant stomach ache) and heating pads. I can’t do much but lie down with the pain those first couple days. The days before and the several days after the heavy days are exhausting. It sucks having this 7-10 days every month. I also hate having to schedule vacations around it. I never want to go on vacation during a period. The whole vacation is worthless. The bleeding is also a lot more than most people from what I hear. I also get crazy night sweats before and during the first few days. Then I get really cold the last few days. It’s why I hate when men complain about it being easier for women to qualify for races . It’s like, do you also lose a gallon of blood every month and aren’t able to run for a few days because of the bleeding and exhaustion? Do you have smaller lungs and heart and less muscle mass? Do you have hips that angle? No? Then just run faster dude.
A word of caution if going contraceptive route: Implanon/Nexplanon made my periods and PMS moods (depression, anxiety, sensory and SI) so much worse and I wouldn’t wish that on my worst enemy!!
this is prob a tmi but i have really bad sensory issues with pad especially when you feel the lining coming out i have to wear a tampon because the feeling alone will make me have literal breakdowns and my period is so heavy i can’t wear tampons i have been having breakdowns all day this isn’t fair 😭😭
I went the way of using nuvaring continuously (no periods) because my menstrual migraines*, which not even oxycodone (the only migraine "daily preventative" that works for me) can reduce the 10/10 pain from, but also before using birth control with periods I had period symptoms that likely would have been diagnosed as PMDD today. Like a much needed autopilot switch, my body tends to do much better on daily exogenous (influences, often medications, from outside the body) chemicals taking over instead of my body trying to stabilize multiple, synergistic systems swinging like a chaotic pendulum on PCP. In other words, I don't have any side effects with continuous use nuvaring, but ive heard from many women that they do. *Honestly, the only issue with nuvaring has been when a primary dr assumed I needed it for birth control & so Medicare didn't want to cover it. I had to go into my records & send Medicare the 5 year old appt summary where a gynecologist wrote it had been helpful for my migraines & wait 3 months for them to finally cover the meds/appt. Some Medicare patients with PMDD & other gynecological conditions that are treated with birth control have had issues getting it covered as well, but not out of miscommunication, just because Medicare really doesn't want to be seen as giving federally approved anti-contraception aids.
@@MomontheSpectrum your videos are very helpful, its just my problem and i'm an adult. I shouldn't said it that way. My bad, not yours. I don't know if you say something in the video about the transition from child to girl when the first period happens. That could be very helpful. When it happened to me, i wasn't diagnosed so nobody could understand. It very nice if we could help girls emotionally with transitions.
Good day. Sharing my support . Im a new friend here now See you at my Home. wishing you success and more additional true friends to come God Bless Us Always
So, when do we have a quiet time, when we are autistic, ADHD, over anxious, over thinking, and we got PMS + bad time during periods wich are each 3 weeks as for myself (43, childless, never got pregnant, so I'm in pre-menopause).... 😭 Never....
I think when I am on my period I am a bit calmer? It is weird, but I get really sleepy and tired. I don't want to move. If I am forced to go outside I rarely communicate, and at the same time there's a background worry of someone figuring out I am on my period (which is ridiculous). Maybe I am just shutting down for a while. At the same time my sense of smell gets really better. Maybe I do get overwhelmed by everything around me and in me , therefore tiredness and sleepiness... Can highly relate to menstrual cups and disks problem. I was trying to be more eco-friendly, but couldn't handle the sensation. I think, I have a problem with any type of penetrations, cause I couldn't use tampons either. I am currently trying out reusable pads, but sometimes the smell gets to me and I cannot wear it outside - anxiety of being "found out" peaks, cause I am afraid I might smell bad. I also tend to overheat in those, but I guess it just a material problem - need to find a lighter one. Thank you for the video, It is a rather intimate topic and it is kinda hard to bring up during conversations. Also, rather embarrassing - as an adult having a problem that connected to personal hygiene... People tend to be question your maturity and judge you, sometimes even implying that you are not taking good enough care of your image to be in a community. I assume they are joking, but it could worsen anxiety during socialisation, and force to mask even harder, not showing any kind of weakness.
HOLY CRAP. Everything finally makes sense. Honestly the meltdowns and insane sensory overload during the luteal phase of my period was what lead me to get mental health help, and that's ultimately what lead me to discover that I'm autistic. I had no idea there was a SUBSTANTIAL link between PMDD and ASD. I'm getting that awesome excitement that comes from connected dots!!! I love that now that I know I'm autistic I've stopped trying to fix myself and instead I'm trying to understand myself and it's fixed everything.
Yes!!! This video and all your comments feel so validating. I feel like crying.
Yeah I had no idea - my periods literally ruin my life. I'm astounded nobody mentioned this to me before
SAME it was a big indicator for me
Gods I wish I'd found you sooner, and I'm fighting tears after watching this. I was 48 when I finally realized I was on the spectrum, and 50 when I recognized ADHD. I'm going on 52 now, and have fought with terrible cycles since I was 9. I go through EVERYTHING you listed, and honestly thought I was alone in how badly it hit me. I also have PMDD, PCOS, and hypothyroidism, and was prescribed a low dose of prozac to help manage the cyclical depression, panic, and anxiety. All my life I was treated like I was just being melodramatic, or playing it up for attention or to get out of school, and that only added to my self-loathing and stress and resentment of my own body. I honestly never connected the dots between ASD and my PMDD for why I was feeling everyhing so intensely, and just got in the habit of either not saying anything (because I expected to be shut down), or constantly apologize for my "weakness" when I felt overwhelmed. But I knew something was wrong when my depressive episodes started getting worse, and after 6 months of tracking symptoms I approached my doc with the documentation. I was literally shaking expecting to again be dismissed and ignored, but he not only believed me, he thanked me for being diligent in tracking. It was so incredibly validating.
I was on hormonal birth control for over a decade to try and regulate my cycles, and only stopped taking it last November. My body is still adjusting to that change, and FINALLY stopped with the bleeding as of January. Fingers crossed that menopause is finally here, but I was told it has to have stopped completely for 12 months to be considered true menopause. I mention this because despite the blessed lack of bleeding, I still feel the anxiety and hormonal shifts, and have been in a heightened state of "just in case..." ever since.
Thank you for your comment and sharing your experience here! I’m sure it will help countless others. 💞
@Heatherwind I understand & have suffered similarly. I don’t know why more doctors don’t thoroughly check hormones. Perhaps looking into bio identical hormones getting your levels checked by an integrative provider might be useful (I’m not a doctor, just have found viable options & answers from this approach.)
Love your videos. After a long and difficult adolescence and early adulthood, my daughter received an official diagnosis at age 25. My suggestion is the impact of autism, even high functioning autism, on a sibling. My younger daughter spent years defending her sister against bullying, and standing up for her even in spite of the most cringe inducing behavior. Now they don’t speak (and live in the same house). One crisis too many about a year ago, before the diagnosis. I’ve been advised to leave it, but I can’t help but feel if she were to watch some of your videos, and other content providers, she would understand her sister’s behavior, so much better!
Anyway, your videos have been very helpful to this anxious mom. Thank you!
I'm new to not experiencing the bleeding But do experience the emotional intensity even moreso during the time frame and the anxiety etc too I Greatly appreciate you sharing this comment
Pain is only a minor part of PMDD. It's also severe mood swings and feeling suicidal during your period and ovulation.
Bingo! It's so much more than just "PMS on steroids".
Thank you for talking about periods! I've always felt periods are a burden for me, even when I started reading about feminism and learn how to love more my body how it is. Now, diagnosed with autism, I feel that finally I am accepting me for who I am and that includes me hating my periods and it's ok, I'm not less feminist for that. Also, recently I understood that I dealt all my life with PMDD, which became very clear how I am not a difficult person, I am just more sensitive to the changes of hormones in my body and that affects how I feel, my humor and how I express myself to others. Using medication for anxiety (fluoxetine) has been helpful to me in this scenario too (PMDD). EDIT: when I first commented I was in the middle of the video, so, the part about feminism, isn't because of #9 hack, which is an amazing opportunity to make peace with ourselves
This is wonderful! Thanks for sharing
I can’t even use birth control because it makes me throw up. Hormone have a strong effect. They’re also so painful, I have to take ibuprofen (which gives me an instant stomach ache) and heating pads. I can’t do much but lie down with the pain those first couple days. The days before and the several days after the heavy days are exhausting. It sucks having this 7-10 days every month. I also hate having to schedule vacations around it. I never want to go on vacation during a period. The whole vacation is worthless.
I switched to a menstrual cup several years ago and my only complaint about it was the stem sticking off the bottom of it (one is just very aware of it at times). Then I heard from another autistic person that they also make menstrual cups with a loop instead of a stem so I bought one and I'm super excited about it. At the moment, I'm still on a vacation from my cycle because my daughter was just born nine months ago so I haven't used it yet. I wish I could report whether or not it makes a difference. Maybe some other cup fan out there knows and could reply. Incidentally, one of my big "aha" moments in discovering I'm on the spectrum was reading another autistic person's experience with puberty and realizing that my experience was just like that. I handled the onset of my period in an extremely autistic way... And now that I'm in my mid-40's and looking at the onset of menopause in the years to come, I get to do it all again 😂
I just cut it off when I buy a new one - works great!
+1 to trimming the stem! the cup makers even suggest it if it bothers you. i cut off 1/2-2/3 of it
I use my menstrual cup on its inside out
This information applies to people without autism too, I wish you went into detail on things that would help autistic people. Every girl should already know about heating pads, hydration, exercise, talking with a friend. I wish you provided other information that we didn't already know.
Thanks for this video. I didn't even realise PMDD and Autism had a connection. I know I have PMDD even though it's undiagnosed and I was diagnosed with ASD 2 years ago. It finally makes sense! 😭
Secondly: I have an IUD and the time it took my body get used to it was frustrating. Increased cramps and spotting for about 2 months but it's finally settling. What I'm noticing now is that my PMDD emotional symptoms are prolonged and also the cramping before my period starts sooner. Less bleeding though. So there are benefits for me but comes at a price. This is just my experience so far (can't speak for others). I'm giving it at least a year to see how I go.
Thirdly: I was looking a while ago at period underwear but it's pretty expensive so actually I found reusable pads which work the same way except you just put them on like a pad and can wash and use again. These were cheaper and you get more in a bundle.
Thanks for all of your suggestions! Hope some of my anecdotes help! ❤️
Yes thanks so much for sharing this info! It is very helpful and I’m sure others will feel the same.
I've finally found reliable and comfy ways to manage my monthly bleeds and I'm over the moon about it! I use both "period panties" (from Your Moon Time) and overnight reusable menstrual pads (snap around the center of underwear) - overnight size b/c they're extra long. The pads esp hold more than disposables ever did for me. For both, rinse out until water runs clear (a bit gross, but no more so than dealing with disposables), then stick in machine wash regular cycle, (no fabric softeners or bleach), pull out to hang dry. Super easy, high recommendation! I can't tell enough people about this. B/c diva cups and similar never worked for me either. I'm so glad there are other options now!
Something that really helped me with the pain is Mayan Abdominal massage. My cramps have always been awful. After one session and doing a daily 10 minute self-massage she taught me, I had zero pain during my period. Pretty amazing. I'd highly recommend it. I find that full spectrum CBD helps significantly with the mood problems, though it doesn't eliminate them. It just makes it easier for me to not get totally lost in the overwhelm of feels.
I still haven't found a solution I like for dealing with the blood. I don't like the cup or the sensation of the pads. After watching an Abby Cox video about historical period care, I'm about to try making myself an 18th century period apron out of linen. I like that it would keep the blood farther away from me so I'm not feeling the sticky wet sensation. Plus linen is so breathable, I feel like that would be nicer than the pads or underwear that have plastic backing or whatnot. Can't stand wearing plastic stuff.
I love the idea of an easy to use cycle app, but I'd be a bit wary since those of us in the U.S. don't have the right to bodily autonomy anymore. I don't want information about my cycle available to anyone. I feel safer using paper charts. I've been using the charting method from the book Take Charge of Your Fertility for years and it's nice because I can usually tell when my period is about to actually start because my waking temperature changes. They've got printable charts online for it.
The best solution I've found for period mess is actually a homemade cotton pad. It feels like regular clothes, is super absorbent, and can just be thrown in the washer/dryer. It's also more environmentally friendly than anything plastic.
Thanks for sharing Jamie!
I use washable cotton panty liners when I need any, and they are indeed comfy.
(But during a Niagara fall days, any kind of pad will inevitably feel like a wet diaper, and a cup is the solution with least sensory issues then IMHO.)
If you’re having PMDD or mid-cycle pain or any dis-ease in any stage of your cycle, yes, talk to your doctor. Then take what they say and compare to the two most brilliant books on the topic: read Taking Charge of Your Fertility by Toni Weschler (this is SO not just for trying to conceive-it covers all the reproductive health topics you didn’t get taught in school) and WomanCode by Alissa Vitti. For supporting female vitality, whether Autie or not, these books rock. I’ve also started reading Spectrum Women and I believe there’s a dedicated chapter for hormone health, and all the health info is edited by an autistic doctor who specializes in autism in females, Dr. Michelle Garnett.
I use a menstrual cup and love it. I clean it out in the shower so everything gets immediately washed off and there isn’t icky to deal with. I don’t feel it, I don’t smell it all day, I don’t feel that occasional waterfall/flood, and in fact sometimes I completely forget I’m on my period. I had started getting some pretty serious PMS symptoms pretty much when I turned 30 and my doctor put me on continuous birth control for a year because she said “there’s no need for you to have a period if you don’t want one.” I thought it was amazing at first, and then I tried loosing weight and i just couldn’t at all. Stopped it and within a few weeks I started loosing weight again (along with other things I’d been doing along the way). So now Im having periods again and am not looking forward to managing it again.
I used to have extremely painful periods as well (shaking, vomiting etc) but several realizations have helped me tremendously. First, I noticed a huge drop in pain when I cut out grains and sugar and cleaned up my diet. I think with all the extra food sensitivities we have it makes sense that that sensitivity would carry over into periods (pain/inflammation) as well. (Turns out wheat is a huge migraine trigger for me too, soooo better all around!) Second, the more I move the less pain I have to the point where I'm surprised I've gotten my period because I don't have any painful indicators. I am a Katy Bowman fan girl, and her article "menstruation is a movement" really does a great job explaining why movement can help alleviate menstrual pain.
this is great info!! and nutrition is a super important issue I didn't get around to covering. I'm super opinionated on that issue and totally agree food sensitivities can play a significant part in menstrual pain.
Has your period made you urinate more?
I’m on continuous birth control. I don’t have periods anymore and it is heaven. I absolutely hated the feeling of the little gushes I would get when I stood up. That was the biggest issue for me. Well that and the pain. I could take some ibuprofen and the pain would never really go away. It would just lessen a bit.
I’m needing to do something like this. What kind do you take
BTW, there are newer discs on the market that are supposed to help with the mess. My favorite is the Hello Disc, which has a pull tab to help make removal less messy.
Thank you!
I'm on the spectrum and I have pmdd and pcos. It's so validating to know why I've suffered all these years. But now, at 42, I'm dealing with an even bigger beast. Early menopause 😖🥺😭 the kind where I bleed for months on end and experience spontaneous rage. My workday is a literal nightmare.
I'm all for science, just wanted to say that first. And now this: Since I cut coffein out of my diet I've got almost no pain nor PMS at all. It's quite striking actually! I know that many others have experienced this too, so I'd say try it! The effect comes kind of immediately, after just a few weeks. /Nina
Awesome! Thanks for sharing. Foods can have a tremendous impact on our health!
As someone who is only recently realized they were on the spectrum at 39 years old, I am beyond grateful for your channel.
I have been not only misdiagnosed for so long, but also have had to do all of my own research to figure me out. Until I realized I was Autistic, I thought I had PMDD. Now I realize I have Autism and also PME, which exacerbates any other issue I have… so autistic traits are heightened… my asthma… my trauma responses… it just all makes sooo much sense.
Thank you so much for your channel. I’m thinking of getting my own going soon or at least Instagram and maybe podcast too. 💕
I never need a reminder before my period because I get so many symptoms 1/2 weeks in advance! My periods are the worst :( never heard of pmdd befoe today but after looking up the details, my sympoms are making a lot of sense
yes I get obvious physical reminders about my period as well. I feel like I notice the second anything even slightly changes with my body.
Even though that is behind me, I lived with severe PMS!!! Pain and emotional distress was very disruptive. At the end it was brutal. Perimenopause was a real challenge. I swear I was allergic to my own hormones.
Just a word of warning on anything that contains valerian root--just be careful not to over do it. For me personally, during the worst bout of insomnia I had lasting a couple months I found it to be very helpful initially. However, I started to need more and more of it and I started experiencing negative side effects like increased anxiety and heart rate, especially towards bedtime when I usually took it. It's not bad in moderation or taking intermittently, just be aware of overdoing.
I tried it once and it had the opposite effect on me. No relaxation whatsoever, I was wide awake all night 😬
Thank you so much for this! Now I know I'm not just being a sensitive big baby. I keep learning so much from videos.
Not a sensitive baby at all! Your body gives you important feedback. Nothing to feel too sensitive about.
I'm autistic, am 29 years old, and I still get periods. I just started my second one. Now I feel disgusted at my period blood clots and the period blood smells because they make me smell like my cervix. My last period blood clot was the size of a roach.😫😫😫😫😫
Not on the spectrum but my daughter is and she is at that age when things are changing 😢 Thanks for the pointers, I'll do whatever needed to support her. She already loved the heating pad, so that's a win👍
I'm autistic and I have PMDD. I'm thankful to know that I'm not alone. I have this severe form of PMS for 19 years and didn't know I have it until my late teens to early 20s. Now, at age 30, I've figured out better ways to cope with these emotional ups and downs during that time of the month and stimming does help.
I have known about my PMDD much longer than my autism. The two together reached havoc on my life, but knowing what they are really helped me.
You and (the RUclips channel) How to ADHD should get together and do a series for women with Autism and ADHD/ADD. You two would be wonderful together. Both helpful and relatable!!
That sucks. I had an endometrial ablation in my 20’s through Novasure because I had the worst issues. It took three months of shedding lining of the uterus after the procedure before it stopped and now it’s been 16 years since I’ve been liberated with NO periods ever again. It was the best choice of my entire life. Having a period was the worst thing of my entire life. I never wanted to have children so that was the best choice I ever made of my life. No pain. No periods. No bloating. No hormone replacement. I don’t relate to girls that talk complain about their periods and I rarely think about it. Sometimes i get repulsed by girls talking about it now because I’m like a guy now that I don’t have one of those. I go on vacations and never have to think about the inconvenience of bleeding all over myself, chairs, beds… omg 🎉my insurance plan paid for my procedure too.
Thank you for this video. I’ve been diagnosed 2 years age (at 38) and I struggle a lot with my period. (But not with cramps luckily.). The link with the heavier form of pms is certainly something I’m going to look in to.
This was a really insightful video. Tracking apps are helpful to remind me to put supplies in my handbag and such.
Does anyone else feel disconnected to their body during their period? I feel it's like an entity I have to babysit and keep going until my period is done and then I'm connected again to my body. I often feel there's me, my brain and my body and most of the time we're all connected but when the wheels fall off or I can't handle something parts can feel disconnected like when on my period for example.
I feel like I’m much more unpredictable. And I feel emotionally disconnected I think.
@@MomontheSpectrum oh wow. That's really interesting. I think I'm thrown off every month. And sometimes it's a body disconnect and sometimes it's that feeling. The unpredictability. And it feels like an unreasonable unpredictability. I'm really enjoying your videos. Thank you for your content.
Oh my god, THANK YOU. I never knew of the existence of pmdd and it explains SO MUCH. I know at least two other women on the spectrum with more of less the same symptoms. It even explains why I had a dysphoric milk ejection reflex when trying to breastfeed my baby. It is such a relief to know that I am not crazy!
Ladies, a heads-up! As menopause nears, your period will get much, much heavier! It does not get lighter! Cramps get worse too. I wish I had known this, so I am spreading the word. And who can I talk to about this, because it is NOT FAIR.
Thanks for the warning!! I’m 44 and I think I’m pre-menopause and I have also noticed my periods are heavier and my cramps are far worse than before!
How long does it last?!
I learned about pmdd 2 years ago while trying to figure out why I'm so crazy around 10 days before my period, I don't have much physical symptoms of pms but my mood has been like nuclear explosion. I finally got it manageable by taking 5htp, but I learned that your body can get "used to it" that it doesn't help much anymore in long term. So when I know I ovulated I start taking just 50mg of 5htp every night, omg I can't express how much gratitude I have for this supplement. It probably save me from dying alone because of my insanity from pmdd destructing my relationship and friendships (and very few to begin with)
wow thank you so much for this video! im 32 yo and just recently realized im autistic so im self diagnosed for now, ive been doing extent research and your channel has been so helpful, after watching you and more autistic creators, doctors and scientists i sat down yesterday and wrote about 8 pages of traits that i have and im actually surprised that it affects periods too because i know i suffer from pmdd but now it all just so much sense, im not crazy, im not less, im just autistic.
saving up to get an official diagnosis so i can get more official help but to be honest all the information to help myself is out here and im here for it so thank you so much.
You look super festive, love it! ❤ My husband got me a Fitbit smartwatch for my birthday and it's pretty amazing. It tracks steps, heartrate, and if you wear it to bed it tracks your sleep and even tells you stages of sleep you are in with a graph. It has the Find My Phone feature (I misplace it allll the time 🤣) and a period tracker too! Definitely helps me stay more mindful! Great topic! I love watching your videos, I always walk away with a smile! 😊
the smartwatch sounds like a great asset!
@@MomontheSpectrum yeah hubby did good this year, very thoughtful!
MY TOPIC. Thanks a lot for doing the research on this, I will binge read the science!
I have struggled a lot with my period ever since I first got it - nightmare level struggles, which doctors did not take seriously. I got diagnosed with endometriosis last year; but if I hadn't gone out of my way to pay specialists I still wouldn't know I have it. So ladies, think about that possibility as well.
As for birth control - I got it to battle my symptoms, then switching to an endometriosis medication. The endo meds gave me incredible quality of life as I had never known before, my background depression was GONE and I could live pain free! But the side effects were so bad I could barely walk from one room to the other (constant dizziness, fell down in public a few times because of it) which resulted in massive anxiety ("OH GOD I CANNOT WALK I AM FALLING AAAAAH!"). Additionally they made me even more light sensitive than I already am, any tiny source of light would already claw screeching at my brain. So... yeah. I had to get off those meds, sadly. Now looking for working alternatives.
So hormones don't necessarily make you depressed, but can have a whole other host of disabling side effects.
Take care, everyone!
Ive struggled with PMDD for so long and I am just now getting testing for ASD (almost 30 years old)! Thank you for talking about this! The best thing for my PMDD personally has been drosperinone based birth control pills like Yaz! Seriously has made the world of a difference. I tried other hormones but Yaz has been amazing for me. I still have symptoms but im able to function and take care of myself - which i wouldnt be able to do without it. Depo shots were awful for my PMDD and SSRIs didnt work either. Exercise, good sleep, and proper hormones can really help manage. I hope everyone pushes for what they need! I went without proper treatment for so long😢
Holy moly!!! this is the video I needed. I feel like my PMDD is actually part of my suspected autism. You are amazing. Thank you!
Thanks for posting....
This video honestly hit me like a brick, that 92% with pmdd is wild... its the final piece of the puzzle I have been going through a diagnosis journey currently, and all the co-morbidities that I have make life and periods especially bad, and I've just begun to realise how much struggle I've actually gone through....😮😢😮💨... I'm surprised how I managed to get through it all thinking it was a normal life, that it's supposed to be this hard and that I just wasn't trying hard enough 😵...
Also, the comments on this video are very validating, it's good to know that I'm not the only one who's experienced all of this...
31 years old and this year I've found out that I have both ASD and PMDD! Thank god I started tracking my cycles and moods, because I realized that I only dislike my husband during my luteal phase. I found that we only ever argue during my "hell week" and literally to the day every month I am logging the arguments.
For everyone considering birth control to not have a period and is afraid of mood issues:
Sometimes it can help. I have much less anxiety since I deal with birth control for a medical issue, which makes sense, since the one I take actually replaces most of the hormones my body makes. So I have CONSTANT hormone levels instead of monthly swings.
Also no PMS anymore. There are other issues I have with BC but all in all it's much easier to deal with life since I take it and it might be worth a try for some of you
Thank you for sharing your experience! Makes sense
Period underwear are the only thing I can use now, I used to use L and anything organic really because of sensitivity to most chemicals. But I also had to try many options because of pinching or sizing and ick factor, had to get them in black and a separate “wash bag” for them.
I had such a hard time with my period! I had male doctors that didn’t believe me. I had clots the size of quarters and my husband even started getting scared for me. It wasn’t until my family doctor saw what was going on and said “this isn’t normal.” She diagnosed me with PCOS and I’ve been getting regular shots to stop my periods that I feel a whole lot better. I’m also hypothyroidism but that’s for a whole other Monster when I was 3-5.
You said insert into the vagina, and I went 😬 lol. So interesting to learn about autism and periods. I am also curious about birth control and autism because my experience with birth control has been terrible!
So wonderful that I don’t have this anymore!!
I actually prefer menstrual cups to pads and tampons. The smells really bother me, and once I get use to the cup I feel like to helps with the cramps. My period triggers my migraines each month, which is no fun.
The cup is a game changer! You don't have to deal with it that often, you don't feel it and it saves money and the planet.
This was refreshing to watch! I feel so guilt tripped about the environment with my choices to use paper products. Im glad im not the only one
Very helpful, Taylor. Thank you for your support offered through experience. Your description including so many sources is 🤩.
You’re welcome! Thanks for your comment.
hey thank you so much for the helpful information, its such a sensory overwhelm being on that time, you explained everything so clearly
Glad it was helpful!
Thankfully I don't have PMDD, barely even PMS. But the first 2 days... Pain level 4-7, almost 8 on the scale 0-10. Sometimes pain meds stop working before I can take next ones...and I really have to take them with the clock!
And when I was a teen, I wasn't really realising how much I actually need. Only learned that as a middle-aged woman.
As a nurse/ midwife I would be concerned re the insertion of any foreign substance up your vagina.
Oops ...sounds funny!
Tampons can even cause ascending infection for some if you do not remove soiled tampon regularily.
Good hygien is essential!
Re the cups....you run the risk of infection unless you keep aseptic technique....wash hands and insure cups are aseptic before inserting them.
The safest still is clean sanitary towels.
Congrats on your amazing channell.
Thanks for sharing your insight!
This is a great topic that I bet is hard to find more conversation on. One thing I’m struggling with now related to this is how to find pain management options that don’t involve hormonal birth control! Like you mention, emotional regulation is already difficult enough being autistic! I don’t want to add another factor in the mix. Still searching for answers there, but that supplement seems like a helpful addition! Thank you :)
I’d love a collab with you and Mama Doctor Jones. She’s the best on women’s health!!!!! Also, from Texas…but now lives in New Zealand!
I'm 49, I'm in the perimenopause stage. The menstrual pain was worse during my teens-30s. In my 40s the pain isn't that bad, mostly none existent. My issue had always been mood swings which is why they diagnosed me with pmdd, they did Rx HRT in my 40s but I didn't really see a difference with my mood swings so I stopped taking it.
This video was exactly what I needed. Thank you ❤️
I love reusable period underwear. I may have to change them extra on my heavy flow days but other than that it’s just like wearing underwear. You can literally just throw them in the laundry with other dark or colored clothes. If you leave them on too long they start to smell but that’s a good reminder for me to change them. With perfumed pads I think I would always leave them on too long on my light flow days and that probably wasn’t healthy. From my “research” you should change them every 6-12 hours at least.
(CAVEAT) if you don’t have a washing machine where you live then dealing with these will SUCK.
Wish they’d had these when I was 10 and first started menstruating 31 years ago
The washable undies
I already went through a ultrasound and everything else and my stuff is working good
i'm so glad you made this video
i feel so alone about this
and you talking about this is so welcoming
💜💜💜
Period panties were life changing! So much easier!
I'm so glad to have found your channel. Thank you so much for all your information, interesting and important videos :)
You’re very welcome! Thanks for your comment.
Hi, if you are looking for environmental friendly options, I really recommend Etam period panties. They are not "stilish" or cute but they are good quality different absorption levels. I use the high absorber ones on the first 2 days and during night and the medium absorbing in the rest of the time. They seem bulky but once I tried them on, they were much more comfortable and less noticeable than even a light pad. Usually with pads I would hear their plastic noise while walking especially when wearing skirts and they would constantly move around and leaking at night or while I was sitting for long periods of time e.g. at work. And with these panties I solved all my problems! The price is not cheap but they are guaranteed to last 5 years and I've been wearing them for a year now and they are still perfect. I also calculated the cost of buying pads every month compared with the initial investment of buying these panties and they are actually cheaper than buying pads for a year. If you are unsure about period panties, don't buy a dozen, just one, try it during your period, and check if it works for you. I started lime this and after 2 months of trying I bought the rest that I needed.
Thank you thank you thank you!!!! I needed this video for the longest time!!! ❤
Thankyou for your inclusive language - as a nonbinary person with a uterus I really appreciate it.
My PMS is horrendous in itself and makes my symptoms much worse. I didn't realise how draining managing the emotional roller-coaster was until I got a mirena IUD which stopped my periods all together. I did because it's extremely reliable long lasting birth control but it literally changed my life in how much it improved my mental health. I struggled with oral contraceptives because they negatively affected my mood but the IUD is such low dose it doesn't have that affect for me. I wish I'd done it 20 years ago!
Pixie Cups is a brand made in the USA and they make washable pads and menstrual cups (which I don’t use because they’re so uncomfortable)
I also don't care for menstrual discs - messy and weird. the disposable discs are actually designed to allow period sex, which isn't a high priority for me haha, too risky/stressful. But menstrual cups, on the other hand, have been a game changer for me (my personal favorite is the June cup - partly because of a more comfortable stem, which I didn't like about the Diva cup.) I think it's way less messy than pads and tampons and the only time I have to see evidence that I'm on my period is when I have to empty and rinse it. That's more frequent the first day or two when my flow is heavy but after that I barely have to notice it's there, emptying once in the evening with my shower. It's helped me be less grossed out by the whole thing because the amount of blood seems a lot less, limited to how much the cup can hold rather than soaking and spreading out into every bit of a pad. And it makes me feel more in control of and understanding of how my body works. I've also heard that some women feel better when they switch because the cup doesn't have the ingredients often added in pads and tampons that aren't actually good for our bodies. (I haven't yet researched whether that is actually true or not).
No shame on anyone who can't handle dealing with a cup or disc due to the sensory discomfort, just to note that for some autistic women like myself it's significantly limited that sensory discomfort and is worth at least trying. There's a slight learning curve in getting comfortable with inserting and removing it securely, but for me it's been so worth it for regaining a greater sense of agency with my body. Also saved me a lot in pad/tampon money :).
Thanks so much for sharing this here! I know it will be helpful to others who see it as well.
Thanks for this - great info! It was very difficult to hear this vid on my phone (no headphones) bc volume at max was so low. I think your newer vids have more consistent/louder volume, & not sure u can adjust on older ones, but just a suggestion! (Ppl can always turn volume down, but can't go beyond max)
The whole concept of a cup or disk is sooooooo gross to me. I can't even bring myself to try it. Can't do tampons either, feels too weird. I use pads. Always have. But I can only tolerate a specific brand cause they're thin enough but still super absorbent, and especially cause they're loooong, not stupid short ones. Also, no wings for me, they bug my thighs.
As I've gotten older (40 now) my cramps and back pain have decreased significantly from what they were when i was in my late teens (got my period at 15, almost 16) and college. I used to have the most wicked backaches when I was younger, and the nausea the first day or so was unreal. In college through late 20s/early 30s, I had such horrible cramps also, though the backaches let up a bit so they were at least bearable, and the nausea was more bearable too and not as often. I also had horrible, horrible IBS which would get waaay worse before and the first days of my period.
Nowadays, I can always count on a crap-ton of pooping the day or two leading up to and the first day or two of my period, but my gastro symptoms aren't bad at all. I get cramps but they're manageable. One thing that's weird is that my period is a lot heavier but also a day or two shorter than when I was younger.
This is so helpful and I feel like I can relate. Without my IUD I have heavy periods and I have cramps a lot before and during. My PMS gets bad and overwhelming and it can cause autistic meltdowns when I’m not getting my needs met (got mad at my mom once because she asked me to do laundry and I was in pain and exhausted and I snapped). Over the years I’ve tried tampons and pads. I like the menstrual cup (blood doesn’t bother me). I don’t like tampons but now that my periods are lighter I use pads or panty liners. I have considered getting endometrial ablation in the next few years because my periods are getting worse and I know it’s going to be worse in my 40’s. Until then I like my IUD-it does hurt like hell but I have high pain tolerance and I was able to withstand it (I know a lot of people can’t).
I really like this video, as a person with autism and pmdd I just wanted throw one thing out there. More than anything else pmdd effects peoples mental health, mood swings depression and suicidal thoughts being some of the hallmarks. I have found it sooo frustrating for doctors to call it just severe pms. The only other thing I wanted to say is for my pmdd I take bc pill called Slynd, but in general one of the ways of helping pmdd (the mood specifically) is bc although bc effects your emotions after about two months it regulates your emotions becasue it regulats your hormones and pmdd is a effect of drastic changes in hormones so bc can definitely help mood swing etc.
I have worn tampons before, but they were so painful to wear. I would have them inserted correctly, but I could still feel them. Thankfully, birth control has really lightened my period. I still change them more than I really need to, but it’s the whole sensory overload that makes them feel so disgusting if I wear them for a long time. My cramps are nowhere near as bad as they used to be (the pain would radiate to my back). The best part about birth control is knowing exactly when my period will start and delaying it by a week if I’m going on vacation.
Yes it’s so nice knowing the exact date!
Oh my goodness.... so that's why for almost 2 weeks out of the month I feel like I am in total and absolute disrepair. Everyone says when I am happy it's like I am a golden retriever and everyone wants me around because I make them feel good. However, for almost a week to a week and a half of the month, I seclude myself in my home and only go out if I need to because I literally just can't function without either being angry or in tears. It feels like there is no light at the end of the tunnel.
Younger me would have just made a big fuss about how I wanted to be unalive but now as an adult I just think 🤔 "Oh yeah, it's that time where everything looks like it's going downhill for about a week"
Which is where doctors diagnosed me with BPD when I was a teen. I didn't need meds, I just needed someone to reassure me the feelings would pass and even if I don't feel okay, that I would be okay and they are there for me if I need help and cuddles.
Good lord, this makes so much sense now. I have to tell my husband.
When younger, I couldn't understand how all women have the same pain level as me AND were able to be active, motivated, go to work and/or school.
Turns out: not all women have excruciating pain like me after all. Go figure!! I didn't figure that one out till I was in my 20's.
I had a IUD for 6 years no periods and that was amazing too! Hate having my period because it’s so painful and I’m prone to meltdowns.
I hope this isn’t offensive or offends anyone but I’m so glad that I am a man 👨 on the autistic spectrum so I don’t have to deal with these extra issues of autism. It is hard enough to be on the autistic spectrum as a man 👨
Your video is so informative and helpful! Thanks for sharing!
You’re welcome! Thanks for your comment.
Wow. I suspect I have autism and I had pmdd. When I was younger I remember extreme pain and nausea. I unknowingly treated with birth control until my body could handle them. 10 months of daily vomiting with pills and 18 months of whole body hives with depo. I ended up treating with surgery. Wish I had seen this sooner. Great video!
I have suffered my whole life from cramps. I've complained to my nurse practitioner and they checked me for fibroids but i have none. They say im normal. I never knew I may have PMDD. Also like you, my ADD is increasing and my overall autistic symtoms may be increasing or im much more aware of them since ive been single for a few years and much more intuned with myself. the ADD is most bothersome to me right now and i'm becoming more forgetful. It frustrates and scares me. I have anxiety from forgetting things.
Formula 303, a natural muscle relaxer. I was just toying with the idea of taking muscle relaxers the other day. This might be just the thing.
I did some yoga today I had pain and was super crabby I stayed away from ppl and laid down in the back of my hubby”s truck I got snuggly. I’m here just relaxing on the verge of menopause was hoping it was done lol. Thanks for your advice I’m also on the autism spectrum ❤️❤️❤️.
Hi Heidi! Thanks for your comment.
totally true!
I've been so extra sensitive about any smells from me ... I have PMDD, and I've gone into the emergency room for pain, and my behavior was out of control... Now that I know how serious I get. I baby myself, and I don't talk to anyone, really.
*THANK YOU for sharing!!*
I am trying the Hello disc… a lot less mess than other discs if you are looking for one as it has a pull tab you can wear in several positions. Worked really well last month for me.
Thanks for sharing this tip!
Yes..Valerian root smells terrible but is good for sleep and anxiety ☺️
I don't particularly enjoy the way it smells either!
I am very sensitive to hormones. I can’t use birth control because I throw up and constantly have a headache. I have to take ibuprofen (instant stomach ache) and heating pads. I can’t do much but lie down with the pain those first couple days. The days before and the several days after the heavy days are exhausting. It sucks having this 7-10 days every month. I also hate having to schedule vacations around it. I never want to go on vacation during a period. The whole vacation is worthless. The bleeding is also a lot more than most people from what I hear. I also get crazy night sweats before and during the first few days. Then I get really cold the last few days. It’s why I hate when men complain about it being easier for women to qualify for races . It’s like, do you also lose a gallon of blood every month and aren’t able to run for a few days because of the bleeding and exhaustion? Do you have smaller lungs and heart and less muscle mass? Do you have hips that angle? No? Then just run faster dude.
I confirm that running actually does decrease the bleeding briefly as well. It’s almost like your body knows your busy and holds off a tiny bit.
It might be worth looking into vit B and chaste tree.
A word of caution if going contraceptive route: Implanon/Nexplanon made my periods and PMS moods (depression, anxiety, sensory and SI) so much worse and I wouldn’t wish that on my worst enemy!!
this is prob a tmi but i have really bad sensory issues with pad especially when you feel the lining coming out i have to wear a tampon because the feeling alone will make me have literal breakdowns and my period is so heavy i can’t wear tampons i have been having breakdowns all day this isn’t fair 😭😭
You have no idea! Ty!
I went the way of using nuvaring continuously (no periods) because my menstrual migraines*, which not even oxycodone (the only migraine "daily preventative" that works for me) can reduce the 10/10 pain from, but also before using birth control with periods I had period symptoms that likely would have been diagnosed as PMDD today. Like a much needed autopilot switch, my body tends to do much better on daily exogenous (influences, often medications, from outside the body) chemicals taking over instead of my body trying to stabilize multiple, synergistic systems swinging like a chaotic pendulum on PCP. In other words, I don't have any side effects with continuous use nuvaring, but ive heard from many women that they do.
*Honestly, the only issue with nuvaring has been when a primary dr assumed I needed it for birth control & so Medicare didn't want to cover it. I had to go into my records & send Medicare the 5 year old appt summary where a gynecologist wrote it had been helpful for my migraines & wait 3 months for them to finally cover the meds/appt. Some Medicare patients with PMDD & other gynecological conditions that are treated with birth control have had issues getting it covered as well, but not out of miscommunication, just because Medicare really doesn't want to be seen as giving federally approved anti-contraception aids.
Thank you for this vid 💕🙏🙏🙏
I couldn't watch it. But grateful that you did it.
Curious if it was a sensory issue that prevented you? If so is there anything I can do in future videos to make it easier to watch?
@@MomontheSpectrum your videos are very helpful, its just my problem and i'm an adult. I shouldn't said it that way. My bad, not yours.
I don't know if you say something in the video about the transition from child to girl when the first period happens. That could be very helpful. When it happened to me, i wasn't diagnosed so nobody could understand. It very nice if we could help girls emotionally with transitions.
Good day. Sharing my support .
Im a new friend here now
See you at my Home. wishing you success and more additional true friends to come
God Bless Us Always
Hi! So glad you’re here.
So, when do we have a quiet time, when we are autistic, ADHD, over anxious, over thinking, and we got PMS + bad time during periods wich are each 3 weeks as for myself (43, childless, never got pregnant, so I'm in pre-menopause).... 😭 Never....
Great video !
Thanks!
I think when I am on my period I am a bit calmer? It is weird, but I get really sleepy and tired. I don't want to move. If I am forced to go outside I rarely communicate, and at the same time there's a background worry of someone figuring out I am on my period (which is ridiculous). Maybe I am just shutting down for a while.
At the same time my sense of smell gets really better. Maybe I do get overwhelmed by everything around me and in me , therefore tiredness and sleepiness...
Can highly relate to menstrual cups and disks problem. I was trying to be more eco-friendly, but couldn't handle the sensation. I think, I have a problem with any type of penetrations, cause I couldn't use tampons either. I am currently trying out reusable pads, but sometimes the smell gets to me and I cannot wear it outside - anxiety of being "found out" peaks, cause I am afraid I might smell bad. I also tend to overheat in those, but I guess it just a material problem - need to find a lighter one.
Thank you for the video, It is a rather intimate topic and it is kinda hard to bring up during conversations. Also, rather embarrassing - as an adult having a problem that connected to personal hygiene... People tend to be question your maturity and judge you, sometimes even implying that you are not taking good enough care of your image to be in a community. I assume they are joking, but it could worsen anxiety during socialisation, and force to mask even harder, not showing any kind of weakness.
everything is spot-on but I am a woman not a person with ovaries
They have hormone blockers for people with a lot of pain now, I’m scared to try it but my dr thinks I should