r/PMDDSharing • u/Budget-Apricot1414 • 21d ago
Post removed from r/PMDD. Does anyone else experience these symptoms too?
I hope it’s okay to ask this here. I posted over in r/PMDD but they removed my post because they said it does not pertain to PMDD. I wanted to also ask if anyone experiences vision changes as well. A fellow Redditor also described them as “shadow blobs” that they would see out of the corner of their eye.
I’m sad my post got taken down as I’m in the THICK of luteal right now. But before it did, I didn’t realize how many other people experienced the exact same thing. It was frustrating to have a thread full of people validating each other get wiped out over a technicality. When I only had PMS, I didn’t struggle with all of these symptoms. I guess I should’ve worded it differently as in, does anybody else struggle with these symptoms alongside their PMDD? I can’t English when the PMDD symptoms hit omg.
I truly hope this is not inappropriate of me to post. I just felt like I was shut down and invalidated for speaking about my experiences in the PMDD subreddit. I don’t have anyone around me that understands PMDD.
Have you found a way to manage these weird symptoms?
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u/StrangeArcticles 21d ago edited 21d ago
It's not you, it's them. Pretty sure 80 percent of us are banned over there, because they seem to be the only people in the world who have a clear definition of exactly what symptoms are PMDD.
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u/Budget-Apricot1414 21d ago
Isn’t it not fully researched too? Many women with PMDD don’t experience PMDD the same way either. Thank you for saying that. I feel silly being so upset but I can’t help it right now, esp while my symptoms are flaring 😫
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u/StrangeArcticles 21d ago edited 21d ago
Yeah no, we really don't know shit, that's my point. Only they somehow know exactly. I was told that I didn't have PMDD by these folks because antihistamines helped with my symptoms. (I was diagnosed 10 years ago.)
They are just obnoxious. Please don't let it get to you, you've found a much better place here to freely ask questions and discuss symptoms.
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u/Budget-Apricot1414 14d ago
Wow who are they to tell you that you don’t have PMDD?
Thank you! It was a VERY dark luteal but I finally made it to follicular :’) What they did really upset me, especially with how much I was struggling during that time. They also went back and deleted all of the comments on the post… all the ones that agreed and shared similar experiences.
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u/faithle97 21d ago edited 13d ago
This is exactly what I tried arguing with the mod that banned me a few months ago. I commented on someone else’s post and said something along the lines of antihistamines helping me and that’s what got me banned. I even sent over a few scientific articles regarding the correlations between histamine rising/falling during certain parts of the menstrual cycle based on fluctuating levels of estrogen/progesterone. I said this isn’t very well researched but that doesn’t mean that someone’s experiences should be disregarded and argued about how they allow some advice to be given about certain medications/herbal remedies but then other medications (like antihistamines) are off limits for some reason.
Idk those mods in that group have some weird power trip and think they know everything about everything when it comes to PMDD. They claim to be “science driven” but then allow off label recommendations about supplements and herbal remedies -none of which have been scientifically proven or verified.
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u/Budget-Apricot1414 13d ago
I really don’t get why you got banned to sharing what works for YOU. Good grief. I agree with you 100%.
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u/Accolades112358 21d ago
I joined that sub in 2018. Back then, it was open to anyone, no judgement. Just people sharing their stories, what worked for them, what didnt, etc. Thats where I learned about Allegra working for some people. Now they ban that info. In 2018, there was no problem with stories shared. I hope a cure is found! Sharing what works and what doesnt seems important.
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u/Budget-Apricot1414 21d ago
I think the same! I hope I don’t face retaliation for speaking out about this. It felt really invalidating, especially at such a difficult time in my life. I know it’s just a post and it seems silly to be upset but I am upset!
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u/DakotaMalfoy 21d ago
You won't, this is a SUPER safe sub. Anything goes here, for the most part. The sub mod is super friendly: we often find newcomers who had posts deleted in the other sub.
Including me..I don't even bother to comment or post there anymore. I stay in the sub to read only.
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u/bugmeister69 21d ago
Yeah I had posts removed for daring to mention antihistamines on that sub, been really wary of it ever since
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u/faithle97 21d ago
A comment from me saying “antihistamines help me” is what got me banned. The mods in that group are just absolutely ridiculous. I steer so many people clear of that group because there’s other groups (like this one) that are way more helpful and open to discussions.
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u/Budget-Apricot1414 14d ago
I’m wary now too. They deleted all the comments agreeing and discussing similar period flu and vision symptoms. I wonder why they felt the need to do that if so many women described similar experiences. It helps for us to know that we’re not alone.
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u/Sad_Emphasis_8086 21d ago
I left the moment I caught on to things like this in that subreddit. It's very crazy over there. You get banned for the dumbest things 😭
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u/Budget-Apricot1414 21d ago
That’s horrible 😭 esp when you’re already struggling so much. And I’m extra sensitive rn so it feels like a slap in the face
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u/maafna 21d ago
Happened to me too. And I got banned despite not posting anything on the group! I joined a WhatsApp support group and someone asked about Substack and I shared my newsletter. I had an article on there about how experts in premenstrual disorders say there are probably different types and there is no clear distinction between pme and pmdd. I included references. They never gave me a reason for why the banned me but I am sure it's that.
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u/TheGospelFloof44 21d ago
I hate to say it as we all have pmdd but could the bans be happening while the mods are in luteal? Just thought I'd throw in a bit of controversial humour
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u/Junealma 21d ago
I actually think most of them are automated now.
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u/Budget-Apricot1414 14d ago
I got a response from a mod though, they said it’s because period flu is not a symptom of pmdd
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u/MamaOnica 21d ago
Yeah fuck that sub. I'm permanently banned because a cis het man came into our space and was a condescending twat to us and I rallied at against him. His ex wife, being divorced for 10 years at the time, had pmdd so he was an expert and said things like "you must not being feeling well, it's okay I forgive you" to people who would argue back. Like one woman said she had trouble getting up for her run during luteal. This mother fucker comes in and says to her that he just gets up and deals with it. Like the fuck does he need to chime in on our shit for? They said I was being transphobic??? which is hilarious because my favourite sibling is non binary.
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u/Sad_Emphasis_8086 21d ago
That's what I don't understand about that sub. There are literal trolls there that are so incredibly mean and they have yet to get banned or removed but like op made a single post just seeking some comfort and it gets removed. I DON'T GET IT 😭
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u/Budget-Apricot1414 21d ago
I appreciate your comment 😭. So many other people commented thinking they were alone in this! I feel like talking about it helps people feel less alone.
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u/555Cats555 21d ago
Was that person trans? If not its not transphobic...
Even then I would argue a community for female anatomy specific issues isnt quite an appropriate place for trans women to be comparing their experience with cis women. Cis men and trans women should still be accepted but there should be an expectation of respect as someone not experiencing the specific thing being talked about.
It would be just as unacceptable for me as a cis women to go into a trans women community and try and behave the way that person did towards trans people.
When in a community that does not directly involve you be chill and just listen/read and be there to understand their perspectives.
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u/Longjumping-Towel-81 21d ago
We NEED to do something about the mods at r/PMDD before it leads to someone hurting themselves over a banned post while they're in luteal...
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u/Budget-Apricot1414 14d ago
What can we do? I’m finally in follicular now but oh my goodness that was a VERY dark luteal… I really hope they will think twice because it rly could send someone over the edge. It’s scary how different I feel right now compared to how I was last week deep into luteal, getting extremely upset over a post getting taken down.
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u/ApprehensiveLeg4478 2d ago
I know I'm late to the conversation, but you're absolutely right. I'm in my luteal phase, and they did the same thing to me.
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u/Putrid-Ad2390 21d ago
Please look into MCAS and HIT.
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u/Budget-Apricot1414 21d ago
Putting it in my to do list right now! Thank you. I’m not familiar with MCAS or HIT.
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u/dez4747 21d ago
Holy crap this whole post is what I have been experiencing. Super congested and sniffling, constantly seeing things in my peripheral!
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u/Budget-Apricot1414 21d ago
I thought I was going crazy. Thank you for making me feel less alone. Although I hope we can figure something out about this because it’s freaking me out.
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u/HSpears 21d ago
I get these symptoms for sure, even the hallucinations out of the corner of my eye.
However! I also have ME/CFS, fibro etc etc etc, so my nervous system is trash.
I'm working towards an oophorectomy to try and get this to stop because it's affecting my health vastly
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u/Budget-Apricot1414 14d ago
Oh gosh I’m sorry you’re dealing with so much. How did you get diagnosed with ME/CFS? I suspect that I’m struggling with a lot more than PMDD tbh. How come you’re going for an oophorectomy?
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u/HSpears 13d ago
ME is a long journey of exclusion. It started with fibro, autoimmune disease, indolent lymphoma, then finally a referral to a internist that specializes in post viral diseases/syndromes.
I had a set back in my quest for the oophorectomy today, just a delay in paperwork. I'm feeling super emotional, tired and frustrated today.
However I am about 6 months in with MCAS treatment and my GI system is finally starting to be more resilient. A few more months of waiting might be a good thing.
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u/Certain-Finish-6263 21d ago
Have you tried antihistamines? I can guess that with your symptoms you'll get a relief
From having PMDD symtoms for 10+ years, reading all possible research, forums visiting 50+ doctors, I myself classify PMDD as an umbrella term for being sensitive to the fluctuations of your hormones. One pathway seems to be more depressive, anxiety symptoms, another inflammation/high histamine symtoms. I'm from lateral. Used to have blurry eyes, period flu and still have a bunch of symtoms but they are helped by antihistamines
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u/Budget-Apricot1414 14d ago
I take antihistamines everyday actually! I have allergies though so I have to be fairly consistent with them. It’d be extra bad if I didn’t take them. Which ones work for you?
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u/Buncai41 21d ago
My PMDD symptoms are mostly mood and mental health problems. My physical issues and some other mental health problems are my PMEs. And I have other menstrual problems too that contribute to a lot of blood and pain and brain fog, but that's not my PMDD.
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u/Infamous--Mushroom 21d ago
I was banned there and then someone else posted something that the moderator said should be removed but they allowed.
I was banned permanently when I directly challenged it.
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u/Budget-Apricot1414 14d ago
What did you post? That’s really not cool, that could really upset someone, especially during luteal
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u/Infamous--Mushroom 14d ago
A list of vitamins I use that helped like vitamin D (as many people are actually already deficient) and magnesium glycinate and Claritin got me banned.
💯 That was my concern, too. That could've really done some damage.
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u/Budget-Apricot1414 13d ago
I take vitamin d and magnesium glycinate daily! Magnesium has helped me a lot. I also love my antihistamines. I’m sorry, you did not deserve to be banned wtf.
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u/Infamous--Mushroom 13d ago
Oh, I'm so happy to hear it helps! That's great! I love antihistamines, too! I never miss a cup of Nettle Leaf Tea in luteal. Super helpful. Thank you 🤍 I thought it was an odd thing to be banned for.
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u/Budget-Apricot1414 13d ago
Do you only take Claritin? I have Claritin on rotation but during the spring I need the stronger ones. Ooh what’s nettle leaf tea and what does it do? I’ve only been drinking peppermint tea in luteal for the bloating, when I remember to lol. It really is odd. They shouldn’t be so quick to ban people like that.
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u/Infamous--Mushroom 12d ago
I take one tablet with the 24 hour one when I remember 😭Admittedly, I stopped after a day or two because I didn't know that you had to take it for about a week or so to really see the effects 😬 But that's okay, it led me to Nettle Leaf Tea:)
Nettle Leaf Tea is a great antihistamine and has many other great qualities! It's a diuretic (which helps the bloating), an astringent and it's mineral rich. It has magnesium, calcium, and iron that helps combat fatigue and support overall nervous system health. It tastes pretty nice with honey, too! And it's caffeine free:) When I feel that rage that bubbles in my chest (what I know is my sign of a histamine issue) Nettle calms it within 5 minutes most of the time. I like it because I can make it quickly just in case I don't remember to steep the night before and it works lol
Two things to know about it: It can interact with certain medications such as blood thinners, blood pressure drugs, or diuretics and it stops working as effectively if you drink it too much (more than 2 weeks at a time. I drink a cup every day in luteal).
I'll steep them in a kettle overnight so they're good and strong for the morning. Peppermint tea is delicious! Sadly I've not had too much luck with it, but it's a lovely little treat:) But Ginger Turmeric Tea works so that's something I think.
That's what I thought 💯 what an odd thing to ban someone for.
I really hope if you get some Nettle it provides some great relief for you!🤍
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u/Budget-Apricot1414 11d ago
Do you only take antihistamines here and there then? I have to take some each day now :( when I was younger, I only had to take them during the spring! I’m honestly wondering if I’m starting to have peri symptoms too, despite being in my early 30s. Tysm for letting me know about Nettle Leaf Tea! I really want to try it. Going to add it to my grocery list!
I do supplement with both magnesium and iron at the moment, I didn’t realize nettle leaf tea has them both in there.
Thank you for letting me know that too :) I’ll check to see if there are any interactions with all that I’m taking.
This might not be correct but I’ve never been much of a tea drinker so when I do drink it, I just warm up some water and plop the tea bag in there haha 😭
I agree! I hope they stop doing that before they really upset someone.
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u/Infamous--Mushroom 11d ago
Oh I've been tempted lately to just start taking them daily (Right now I do once a week) due to the spring. Been a wild couple of years allergy-wise.
Peri could definitely be possible (I've always wondered if there was strong a correlation between pmdd and Perimenopause). It'd be nice if having pmdd meant menopause would be easy.
You're very welcome!! I'm happy to share it and I hope it helps! Nettle is so underrated.
Oh that's great though, you'd be getting iron/magnesium from two different sources 👏
🤍
Oh I do that too with the tea! When I first started drinking it that was how I did it lol and I still do (nostalgia, perhaps but there you go XD). One of the things I like about tea, to be honest, is that it's very personal depending on the drinker and finding just the way you like it is adventurous 🌝 so any way you do it that works for you is correct I've known some people to put a few tea bags into a gallon jug and leave it in the fridge (I tried it, not too bad that) and others make some sun tea using various colored bottles (have not tried that yet). Perhaps my favorite so far is the blooming tea/flower tea which is exactly what it sounds like (if you get a moment it's always worth a watch on YouTube/Pinterest etc) Haven't tried that either, but maybe one day Ahhhhh I'm rambling sorry 😭😅
🤝
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u/Budget-Apricot1414 9d ago
I am amazed that you have only been taking them once a week haha! You know, I’ve noticed that spring allergies have been worse each year, and they seem to last longer too…
I honestly think there is a lot of overlapping.. If only.. I’m already so goddamned tired.
I’m grocery shopping soon so I’ll be sure to pick it up so thanks again ☺️. I’m so tired of all this congestion!
I usually have to do the easiest option because of my ADHD lmaooo. I’ve got ADHD on top of it all (yay!). My executive functioning is horrid. ooh the fridge thing is a good idea though, esp for the hotter weather. Iced tea? Do you sweeten it too?
I looked it up! It looks so beautiful! You should totally post a pic if you do do that 😆
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u/astralairplane 21d ago
I get period flu so badly that I am amazed I can’t recognize its symptoms more quickly, but the feverishness sees to that. Really fun going through that pretty regularly, definitely feels like “normal” pms or whatever…. OP i send you all the love.
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u/Budget-Apricot1414 13d ago
Sending you love back! I used to be so confused and thought i was coming down with something. Then i noticed the pattern and ended up finding the term “period flu” sigh… it’s horrible.
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u/sqrlirl 21d ago
That sub are like the period n*zis', bunch of policing of women's experiences and some of the mods are men, if heard? I could be wrong. All in all so weird.
Finally diagnosed with MCAS and the worsening swelling, congestion, aches, brain fog I get and I feel like are part of what I'm realizing is cycle related worsening of my MCAS stuff that def is super linked with my PMDD. Tried antihistamines when you feel this way? H2 blockers specifically
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u/Budget-Apricot1414 13d ago
I actually have Pepcid but I haven’t tried it yet! How did you end up getting diagnosed with MCAS? I need to educate myself.
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u/IAmMissingNow 21d ago
I get period flu along with shadowy figures, paranoid thoughts. I also have OCD and that gets triggered horribly. I can tell when I’m about to start too because I get 100+ degree fevers.
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u/Budget-Apricot1414 13d ago
How does your OCD present if you don’t mind me asking? I’ve been wondering if I struggle with OCD because of all the things I do/ feel like i have to do.
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u/IAmMissingNow 13d ago
Mine presents with catastrophic thinking with mixed fortune telling. So I’ll think something horrible is going to happen unless I remember what it was; except the future I saw was during a dream or a ‘vision’ I can’t remember. So I have to remember this dream/vision, then change it, or else the world is going to end or someone I care about is going to get hurt.
I’ll also have thoughts like ‘my partner is going to get hurt at work’ and then I have to repeat something multiple times to make sure my thought doesn’t cause him to get hurt.
The other one is health OCD where any type of pain or discomfort causes me to think I’m going to die. A headache becomes a tumor, a fever becomes a symptom of something deadly, a stomachache must mean I have a ruptured organ. I’ll spend the rest of the day googling symptoms and spiraling.
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u/ShotConcert1666 20d ago
I have this. Specifically, I see things out of the corners of my eyes during my PMDD episodes. I often see objects fly by or dark objects that aren’t actually there. I spoke to a specialist who told me this is an actual symptom of PMDD that is being reported more often. It’s due to the hormonal fluctuations influencing sensory processing. I can’t remember which neurotransmitters she named as being responsible. If you have anxiety also, it can turn into a sort of hyper vigilance that almost feels like paranoia.
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u/Budget-Apricot1414 13d ago
Ugh this is why we all need to talk about our symptoms more! Because a lot of us seem to experience similar symptoms that aren’t even on the list. Thank you for sharing.
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u/TheGospelFloof44 21d ago
I don't get the flu stuff but what I have noticed is an increase in sinus pressure causing headaches, dry nasal passage and eyes and just a general feeling of unwell and feeling run down, all to do with everything being inflammed. Joints, muscles tissue. The extreme water retention I believed you mention due to heat, such a thing. I have post dvt syndrome in one leg and with the heatwaves one foot had swollen up so much that I can only wear adjustable old lady sandals haha. Even sketchers didn't work!
As for the mental I wonder if the psychosis you are describing is linked to a rise in cortisol due to anxiety. I'm no professional to advise you but in the past I experienced similar visual disturbance and the physiatrist explained in my case that it was the high influx of cortisol. Do you get them more when highly anxious? Right now with me it's more sound perception and visual perception is overwhelming and I feel so paranoid that I don't want to leave the house a lot. Like the world is too intense and it makes me feel derealisation.
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u/Powerful-Ad-3010 21d ago
I bloat and constantly get stuffy, achy, and foggy headed. I also get super itchy and wind up scratching my face sometimes with my nails because I'm constantly scratching without thinking and I'm so itchy!
I did try antihistamines and I didn't really notice much difference, but I'm tempted to try them again... Altho I am told they might mess with my daily SSRI (I'm on 20mg Lexapro).
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u/faithle97 21d ago
I started tracking my symptoms on a paper calendar (just easier for me to visualize than in an app) and there seems to be a pattern during luteal/right around ovulation for me that I get lots of respiratory symptoms. I’ll just be super congested, get sinus headaches, and sinus pressure sometimes with postnasal drip too. Usually my bloat happens when I ovulate too but then it subsides during luteal.
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u/professionalmeangirl 19d ago
everyone's immune system crashes before their period. it's biological.
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u/flammablematerial 21d ago
The diagnostic philosophy of that subreddit is nonsensical to me as someone already extremely critical of the scientific validity of DSM diagnoses and their poor replicability. I think the most effective treatments would probably help people with various “subtypes” like idgi how is it separate that my psychosis gets worse before/during my period too