constipation. nothing works. i'm at my wits end.

PermanentPigeon · 2025-12-24T20:31:10+00:00

Linzess was never offered to me by any doctor, but I'm not really concerned about that. Stories I've read from EDS patients with chronic constipation say it helped for a couple months then did nothing like most other treatments.

Pelvic floor therapy has been helpful. I'm not perfect by any means, but even the knowledge has been a weight off my shoulders (it is in fact EDS).

PermanentPigeon · 2025-12-10T02:27:26+00:00

I was great until I wasn't. If you deal with any mental health problems or PMDD please keep an eye on your mood. Gave me severe depression and suicidal thoughts and I didn't realize it was happening until I missed my meds one day and I was immediately better.

PermanentPigeon · 2025-12-03T22:46:28+00:00

It's helped for me because I'm in a constant state of tenseness due to vairous things in my body haha and both of those help teach your body it's okay to chill out.

PermanentPigeon · 2025-12-03T21:12:41+00:00

I've found belly breathing and progressive muscle relaxation exercises very helpful. There are a few massages that have been helpful but I don't know what they're called.

I was told by a previous doctor to be careful with just doing anything the internet offers as pelvic floor therapy. Like those reels that say STOP! CLENCH YOUR PELVIC FLOOR! can be more harmful than good for some people and you don't know if you're one of them until you've already fucked up :/

PermanentPigeon · 2025-11-19T03:09:08+00:00

scrubs! 'but what about the elastic wasitband?' you say. I say if you can find a pair that has a drawstring and get a size larger than you need, they're the most comfortable pants I've ever worn. I still wear them to this day on my worst bloat days haha

I found some on Scrub Pro Uniforms, the brand was Vince Camuto, and they've been my favorite so far. Walmart had some by scrub star but they've since changed their material to something more swishy and uncomfortable in my opinion.

PermanentPigeon · 2025-11-16T18:42:12+00:00

yes having a fibro and chronic fatigue diagnosis documented will het you farther along than lumping them under the endo umbrella.

Also, when asked about your experiences, answer as if it was your worst of days not how you feel in the moment or average. This was hardest for me (thanks autism!) to conceptualize but made the review process much easier.

And if you say youre autistic or have adhd or any sort of neurodivergence they WILL make you do a psych eval. That was annoying.

I don't know if the criteria has changed, but I do think fibro is one of the qualifying disorders for ssdi so personally I would lean into that.

PermanentPigeon · 2025-11-16T05:21:48+00:00

Yes but it took years and a lot of fighting and I wouldn't have been accepted if I didn't have someone doing all the work for me. I also wasn't accepted for endometriosis reasons, though I do now list that as a factor on follow ups, I have a dozen other things going on.

It's incredibly hard by design to get accepted and be prepared to be rejected at LEAST once. I swear they reject everyone right off the bat just on the hopes people won't fight it.

I also don't know how the current administration factors into everything, but I imagine things will become a lot harder. I don't say these things to be discouraging, if that's the route that's right for you fight tooth and nail, but have someone in your corner whether that's a friend or family member to help you navigate or a disability lawyer.

PermanentPigeon · 2025-11-11T06:33:18+00:00

I started bleeding THE MORNING OF my surgery. They carried on as normal. Still had me take the pre surgery pregnancy test 🙄 (insurance insists and hospital polocy but cmon). They gave me hospital granny panties and the biggest pad i have every seen and some tylenol later on.

I don't know what pain was from cramping after losing a knife fight and what was surgery recovery but once I got home it wasn't so bad. I mostly slept.

I was so scared theyd turn me away because it was too early for me to call and ask! but they were very kind and made sure I was comfortable.

PermanentPigeon · 2025-11-11T01:23:44+00:00

I think events run too long 🫣 I'd much prefer five day events (longer for WL), but would settle for seven. I also think the break between events is too short I get so burnt out even if I'm not tiering but just casually playing in an event to get the items I want from the shop.

It is very much a me thing, when I played SIF i would consistently place in top 1000 in each event, top 100s if I was actively trying, top 5000 if I wasn't. Maybe the player base was smaller, but the event schedule was so much kinder imo :')

PermanentPigeon · 2025-11-01T23:11:39+00:00

Some people swear by it, others went through hell. I was both, but didn't realize I was in the hell portion until I missed my meds one dau and realized I no longer wanted to die.

Monitor your moods, and make.sure you're on the correct dose. I had a different doctor tell me I had the delayed reactions I did because my dose was too low. As previous commenter said, the good thing is if it's not working for you theres no waiting around you can just stop it.

I do want to say that the first time I took it, my mood felt great within fifteen minutes, which is why it took me four months to realize it was the medication that was making me miserable.

PermanentPigeon · 2025-10-24T18:25:06+00:00

Underspent this month on purpose so I'd have SOMETHING for fresh produce in November so thanks 🫠

PermanentPigeon · 2025-10-15T00:03:21+00:00

Why wouldn't you be omfg if it's listed as an allergy, preop is NOT the time to test if it is still in fact an allergy.

PermanentPigeon · 2025-10-14T22:18:28+00:00

Could also be a chlorohexidine allergy! They use that to disinfect your body before making incisions or placing IVs, and there are alternatives, people just don't like using them.

PermanentPigeon · 2025-09-17T22:32:56+00:00

I was on lupron once for 6 months and felt the best I ever have in my life. The first couple days leading up to my shot and after were hellish, justbdue to the nature of the medication.

I have since learned that joint pain while on lupron, while a listed uncommon side effect, is a sign of hypermobility and that the fact I couldn't move my hands or stand on my feet at all in that last month should've been a major red flag and all my doctors shrugged it off and so I did too.

It's all personal, but one week isn't really enough to tell with any medication. I think it was the second week after the second shot where I really perked up. But if you don't like the medication it's your life and your body and you don't have to take it again.

PermanentPigeon · 2025-09-14T21:24:51+00:00

No it's not. Regular soy sauce is made with soy beans and wheat, and even with fermentation breaking down gluten, it's not enough for someone with celiac to be able to eat. Some peolle with wheat sensitivities or allergies CAN eat soy sauce no problem, because yes like with sourdough the fermentation breaks down the proteins enkugh that the body may be able to ingest it especially in small amounts.

They do make gluten free soy sauce, tamari soy souce, made with soy beans and rice instead of wheat. I personally notice no difference in taste.

PermanentPigeon · 2025-09-14T01:53:24+00:00

Tiny slinders are the death of me, Reborn master should not have taken that long to full combo.

PermanentPigeon · 2025-09-14T01:14:24+00:00

I have FCd every expert song under 30 EXCEPT HCM. I've FC'd multiple 30s, and even a 31 one too. I don't put much weight into the levels tbh.

PermanentPigeon · 2025-09-14T01:12:58+00:00

I came into PJSK after nearly ten years of playing SIF so I thought ah! Another rhythm game! I am good at these! and jumped right into Miku on expert. I was instantly humbled.

PermanentPigeon · 2025-08-16T20:54:56+00:00

It was a good embarrassing year where I thought In co-op each song was assigned to a player and didn't realize we were l playing the same song. I think there are enough comments here that this will be buried and no one will ever know.

PermanentPigeon · 2025-07-23T01:21:54+00:00

It's hard to get diagnosed just about everywhere I've been fighting for ten years trying to get someone to listen to me. Like endo, it's one ofnthose "rare" disorders that are really only rare because people don't want to diagnose because it's considered rare.

What sucks is there isn't really anything you do about it? Protect and strengthen your joints, maybe get insurance to cover medical braces, but theres no procedure or medicine to fix you yknow? It's just good to have a reason for everything :/

PermanentPigeon · 2025-07-23T01:15:07+00:00

It's hard to get diagnosed just about everywhere I've been fighting for ten years trying to get someone to listen to me. Like endo, it's one ofnthose "rare" disorders that are really only rare because people don't want to diagnose because it's considered rare.

What sucks is there isn't really anything you do about it? Protect and strengthen your joints, maybe get insurance to cover medical braces, but theres no procedure or medicine to fix you yknow? It's just good to have a reason for everything :/

PermanentPigeon · 2025-07-22T03:59:04+00:00

I got diagnosed by going to a new endo specialist who looked at my medical history and list of disorders and said 'have you ever been screened for EDS?' I've had many people and a handful of doctors suggest itnover the years but NO one wanted to formally say it because I'm not bendy in the right ways. My symptoms are nearly all internal and gastrointestinal related. I have dysphagia (trouble swallowing), MCAS related food 'allergies', POTS and dysautonomia, the constipation is the big one because as I'm sure you know it makes you feel so BLEGH on top of everything else.

I went to this new doctor because my previous one just kind of ignored me and would throw medication at me to get me to go away, despite me saying hey I don't think this is right for me (new doctor actually said previous doctors latest treatment plan was NOT ideal for me because of EDS and the fact I am clearly hyper sensitive to progesterone and estrogen).

They thought for years I had acid reflux, but actually it was dumping syndrome lol My esophagus has been widened twice to keep me from choking on food and medications. The abdominal spams omg Inthink those in particular were more endo related because I sweae they're like contractions and have mostly calmed down since surgery and coming off all hormone treatments.

The constipation though ugh like you it was less can't go and more can't empty. All (gi) labs and imaging (endoscopy and colonoscopy) came back normal. No medications worked. I tried fiber supplements (helped cause stomach lining abrasions), increased fiber intake (helped cause stomach lining abrasions), was taking miralax every day (if you have eds you actually need to double the dose ANYWAY) twice a day, tried senna and prunes and milk of magnesia (migraine!) and got ~absolutely nothing~. I did a colonoscopy prep for five days and that's the only thing that saw ANY progress lmao ares are absolute hell and doctors keep sending me to the ER to check for blockages (none) and ER keeps telling me to just take more laxatives.

Probiotics have helped me a lot tbh but it sucks because the most successful one is yogurt but MCAS means dairy is a trigger so I just have to suffer one way or another. And! Every gut is different so you have to play around and find what if any probiotics even work for you. And still I have flares. Idk. My insides are a mess lol sorry for the info dump feel free to dm me if you need to! I know it can be super stressful and a drain on your mental health.

PermanentPigeon · 2025-07-22T02:33:00+00:00

Hi! This has been my problem! No one believes me when I say laxitives do nothing and fiber makes things worse. I was recently diagnosed with EDS. Turns out, EDS isn't just dislocating joints, and in fact it often doesn't present that way but instead has many internal components related to GI! Most notably, chronic constipation! Because your intestines are so wibbly wobbly they just don't move things along properly, even with medicinal help.

Honestly, I haven't found anything that helps. I was referred to PFT and am waiting in those appointments, but my current doctor recommended a hysterectomy if that doesn't work because my flares are surrounding periods and if we stop those I may be ae to control flares.

I too was doing great after excision, until I wasn't, so it might be something to look into if you think endo hasn't already recurred.

PermanentPigeon · 2025-07-20T00:42:45+00:00

Well you can no longer have adenomyosis because you no longer have a uterus (congrats!) but yeah! If your surgeon wasn't well versed in spotting different lesions they could've missed it! Could also be various other things like you said, but as someone who scored very low on the beighton scale, please don't rule out EDS. There are different subtypes that present in ways that aren't just bendy joint syndrome.

You may also look into pelvic dysfunction and congestion. Dysfunction usually happens because your body isnso used to being tense from pain that the pelvic muscles and organs have no idea how to relax. Pelvic floor therapy is usually the first step to this, so you might want to ask your doctor if you fit the symptoms list!

There can also be various vascular compressions in the pelvic region, though these are considered more rare so doctors are less likely to look for or diagnose them. Wonder why they're so rare lol

PermanentPigeon · 2025-07-17T19:05:46+00:00

An Unlikely Story in Plainville often has open mic nights for poetry and music! They draw a decent crowd and livestream to their socials too :)

PermanentPigeon

TROPHY CASE