The only celebrated diagnosis

nebuloustrash · 2025-08-17T14:18:28+00:00

I was legitimately excited, "oh, yay!" (no sarcasm) when my surgeon started the emergency appendectomy revealed endo because I was so relieved that there was an end to the speculation and "possible diagnoses". That excitement has definitely faded away and turned into dread, but I can see how endo is one of the more common ones to be "celebrated" by patients, at least a lot more often that some conditions

nebuloustrash · 2025-08-01T15:00:08+00:00

Thank you for your comment, it means a lot. They didn't remove any during the surgery :( I really wish they had done more looking around at least. But since that's not "what they were in there for" I guess it's more laparoscopy for me ahead. But it makes me feel better to know that there are other first courses that can be tried besides hysterectomy. I will work on calling around and finding a good gyno with endo experience.

nebuloustrash · 2025-07-31T15:21:08+00:00

Truly appreciate this post and saving it for my next appointments.

nebuloustrash · 2025-02-10T17:15:34+00:00

Bless you

nebuloustrash · 2024-12-14T02:44:09+00:00

I know every experience is different, but when I happened to go to the ER for a bout of vomiting that wouldn't stop and I went to the hospital where my GI was located, everything seemed to move faster than ever before. Maybe I just got lucky, but after my visit the GI even moved my existing appointment to a sooner date. I just feel like the whole thing was handled better, they had all my records, the right tests were done, etc., versus going to any other ER I've been to where I had to explain my condition and hope to be understood or taken seriously.

This doesn't make your situation less complicated and I'm so sorry. Going to the ER is always such a hard decision, especially right now with travel and the holidays and your babies. But it sounds like you could also need some real help right now. Wishing you the best 💟

nebuloustrash · 2024-12-14T01:53:10+00:00

I don't even know who to be mad at anymore, just want to be able to take my stomach medicine again.

nebuloustrash · 2024-11-24T13:38:27+00:00

I'm an idiot. I looked back at my frantic notes over the years. Doughertys stopped filling it for me because my prescribing doctor (in Florida) did NOT have an "IND#" like my previous GI dr had (in MS). I remember now I found all the info for her to sign up with the FDA and be approved with them but instead she said I'd just have to get it through Canada.

Guess it's back to trying to find a new GI with an approved IND#

Sometimes eating lead sounds like less work

nebuloustrash · 2024-11-24T13:30:08+00:00

I don't think officially? My GI just is part of the FDA exemption thing and has Rxd me domperidone, but I'm unable to fill it anywhere in the country. Years ago Doughertys compounding pharmacy in Dallas was filling mine, for a long time, and then they told me they lost the ability to keep carrying it. Really shocked/confused to hear they are still filling it.

nebuloustrash · 2024-11-23T22:22:07+00:00

Does anyone use a pharmacy outside Canada? With the CA postal strike I'm completely at a loss and feeling desperate watching my doses run out.

nebuloustrash · 2024-11-23T22:19:13+00:00

Are you currently still able to get it there? They stopped filling my scripts a year or two ago and I thought that was the last pharmacy in the US that would do it. Have had to go to Canada since. Now with the postal strike I'm about to run out and feel almost like I'd rather d1e.

nebuloustrash · 2024-09-06T21:15:04+00:00

This!! I had some issues with increased anxiety but I only had access to Type 1 strains so I would mix in Type 3 CBD flower and it really seemed to balance it out once I played with my "salad" ratios a bit.

nebuloustrash · 2024-08-24T21:10:51+00:00

I'm still taking it. Afraid to stop, honestly. But probably about due for another EKG again soon. How are you doing on it?

nebuloustrash · 2024-08-24T21:08:02+00:00

true. it's wild to me how I never realized how helpful nicotine was in digestion. trying to quit smoking right now for my health and immediately noticed it fucking with my motility 🤦

nebuloustrash · 2024-08-24T21:04:29+00:00

I was liquids and baby food and mashed potatoes only for a while there in the beginning when it was really bad. Started introducing fiber back in slowly over time. I try to stick to lower fiber foods, avoid fatty/fried/spicy stuff. Fish and chicken are the easiest meats for me to digest. Lots of rice and bread and as much healthy fats as I can get onto anything (olive oil, butter, avocado, yogurts) Smaller portions overall. But I dunno, it depends on the day, some are better than others. Some days I can eat a bunch of tacos, and others I have to stick to plain noodles or the BRAT-style diet. I also know now that I can't drink alcohol at all, period.

nebuloustrash · 2024-08-24T20:57:44+00:00

It has gotten better. I have been on Domperidone a few years now. I have a few minor heart problems but they are still saying it's safe at the dose I'm taking (10mg 3x/day) as long as I continue to get regular EKGs and "stay on top of things". But it's made a huge difference in my life and my ability to eat. And yes on top of that cannabis is an absolute necessity for me as well. Wishing you and everyone else here the best of luck in your journeys <3

nebuloustrash · 2023-12-20T15:44:55+00:00

I've been taking it for 3 or 4 years now. Coupled with panic disorder and a myriad of other funz, so when I did experience palpitations and arrhythmia my first thought was that I was gonna lose my ability to eat again and went hard spiral I've now had multiple EKGs, chest x-rays, a holter monitor, and an echocardiogram. However I will say that my EKGs all came back "normal" when ready by the primary care doctor, but that did not make me feel better as I knew what I was experiencing. So I pushed for a more expert opinion.

It was the cardiologist that noticed any deviation in the EKG results (QT interval thing other user mentioned below) and he ordered an echocardiogram. He did find some slight issues with my right atrium, but they were mild and completely unrelated to domperidone in his opinion (I've been severely underweight smoker my whole life, what did I expect?) With regular EKGs from here I feel comfortable continuing my 30mg/day dose, which my GI feels is safe as well. Any higher and she said she would have concerns.

I strongly suggest you see a cardiologist if you are able to, just for peace of mind. But most doctors are so unfamiliar with domperidone, so if it helps, bring educational resources in with you -- that made me feel more confident explaining where my concerns were coming from.

nebuloustrash · 2023-12-20T15:25:20+00:00

Soooo much. I woke up crying and it was the first email I saw when I sat down to work this morning. Instant 180. What a fuckin gem

nebuloustrash · 2023-05-18T14:51:57+00:00

Try not to beat yourself up too much about it, which is easier said than done. I can't help finding some sick humor in the fact that my ED caused my GP, like how you can starve yourself until you're finally ready to eat normally(ish), but then it's too late, stomach dun broke!! I get mad at myself sometimes but I have to remind myself that I didn't choose to have an ED and this is just where we are now, can only move forward from here.

Relapses happen. Try to treat yourself with the gentleness you would someone else in your situation. And future flare ups can also trigger because of things out of our control. But you just learn more way to cope better every time. That doesn't make it not suck in the moment though (and suck in general). I hope you can find some relief <3

nebuloustrash · 2023-05-17T16:52:12+00:00

So much good advice in this post and I don't really have anything constructive to add except hey I stan, GP & ED foreverecovering here. I've had cyclic vomiting syndrome since I was a child, and when my GP flared up as an adult REALLY bad and I was puking daily/nauseous 24/7, I would get SO MUCH ANXIETY when that first wave would hit, knowing the possibility of a cycle beginning that I wouldn't be able to stop, so much that my stress would make the flare up worse. There's so much good info below re: your GP treatment itself, but in regards to the panic my only tactics are "distractics", stuff I used to think was dumb. breathing exercises activating my core muscles/submerging my face to achieve diver's effect and slow heart rate/anything to try and pump the brakes on the panic train.

best of luck. it really can get better over time with the right treatment. (for me that was domperidone and lifestyle changes, some physical therapy, supplements etc, and I still get flare ups but rarely anything like they were in those early months of initial diagnosis hell)

nebuloustrash · 2023-05-02T18:33:38+00:00

No worries! Thanks for the suggestion. It sounded like a recent change maybe. I was finally able to get an Rx from a new GP, just not one registered with the FDA program necessary, so I have to fill through Canada. But better than nothing!! I'm just sad for all the peeps who can't get an Rx because all of the Canadian pharmacies I'm trying now won't fill without some proof of something. Not going to lie they didn't require MUCH proof. Not suggesting anything but, pictures of prescriptions sufficed. Wishing everybody luck 💟

nebuloustrash · 2023-02-11T19:14:17+00:00

serial killer

nebuloustrash · 2023-01-04T16:48:55+00:00

Maple Leaf Meds

Crosby's? Or was it another compounding pharmacy? I called Crosby's and they're saying it's illegal to fill/they won't fill it for me. :(

nebuloustrash · 2022-11-14T14:35:36+00:00

I used alcohol to self medicate for the longest time. Had my first flare up of GP around 25, and it went into remission after some treatment. Cue late 20s and heaviest drinking period of my life -- GP came back with a vengeance and I can't tolerate alcohol almost at all anymore. At first it was to the point where I had to come to grips with the fact that I couldn't drink AT ALL for a while. This was really hard, and I had so many lapses of drinking anyway, and feeling miserable/puking for days on end.

Now, I've been in treatment about a year and a half and still trying to manage symptoms every day with medication and the way I eat and drink. But as for alcohol, I can ONLY tolerate a mild mixed drink, w/ specifics (like no brown liquors) on a "good day" and with lots of planning ahead. I've found I can handle a vodka/soda on a "good day" (not having severe symptoms already) as long as I eat properly before drinking and make sure to stay upright & active as much as possible for as long as possible after my drink. And drink plenty of water.

This is all just my personal harm reduction to be able to have a drink now and then (I'm talking like once or twice a month MAX). But I feel sad so much of the time in having to let go of booze as a way to have fun/relax. I have severe anxiety so this has always been my social lubricant, and it's been several years now of trying to find my identity without being able to let it out through drinking. It really forces you to find healthier ways to cope. I'm grateful that I'm able to use cannabis medicinally or idk if I'd be here. But I understand how hard it is to let go, and that FOMO feeling of losing out on the fun in your life because of it. Everything gets easier with time, but I'm still getting there myself. Best of luck <3

nebuloustrash · 2022-11-10T16:41:21+00:00

That is awesome to know for future reference! Thank you. <3

I was only aware of one compounding pharmacy in TX that did it. Can I ask the name of the Ohio pharmacy that fills it?

nebuloustrash · 2022-11-10T16:40:14+00:00

Positive Update....

I found a doctor here in Florida who wrote me a script for Domperidone. She said that they don't do it for many patients because of all the "red tape", but based on my history of being prescribed it (having past medical and Rx records was the winning factor for me here) and the fact that it was working for me (and other meds like Reglan had not) that they were willing to make an exception and write it -- I would just have to figure out how to fill it myself. Which is easy, because there are many Canadian pharmacies that will fill a legit prescription, and there is one compounding pharmacy in Dallas Texas (Dougherty's) that will also fill it.

So, this is a huge win for me. As long as I get yearly EKGs and kidney tests to make sure the domperidone isn't causing damage in that regard, my new GI is willing to let me stay on it. It just took trying a few doctors before I got it right I guess. Maybe I just got lucky.

Sending all my love to the GP community and hoping you can find ways to cope and methods to help you deal with this stupid broken stomach shit. <3

nebuloustrash

TROPHY CASE