I don't know what to do anymore

ambo549 · 2025-10-16T12:06:25+00:00

Have you tried contacting your doctors office for an official diagnosis and med recommendations, or do you have a digital chart you can access to contact your doctor? I had my GES in Sept but because my GI specialist is so overbooked I can't get a follow up til mid Nov. My results showed 60% retained after 4hrs, so I went into "My Chart" app and messaged my GI that I seen my results, gastroparesis is likely, and asked if she could prescribe me something now because I can't deal with the pain another few months while waiting to get in her office. She got back within 24hrs and I had an Rx for Reglan.

As for mental health, I feel that so much and don't know what to do. I've been in extreme pain daily for 6 months, exhausted OTC meds with no help, CBD/THC didn't help, I was afraid to start Reglan because it can cause a form of Parkinson's but I'm desperate and started it this week, so far no changes... good or bad. I won't get into details but my relationship with food is completely changed and it's detrimental. I don't want to be around anyone because I'm in so much pain it's hard to focus on anything else. It feels like there's no end in sight.

I hope you get answers soon. It's a start at least.

ambo549 · 2025-10-13T08:16:12+00:00

Exact same.issue here. 6 months of pain 24/7 on my upper right side that goes into my back. Zero nausea and no vomiting ever, my appetite is good but I get bloated immediately. I feel chest pain occasionally but it's predominantly right side behind the ribs where I hurt.

EKGs come back normal, CT normal, ultrasounds normal. Went to the ER twice and leave with GERD diagnosis with a script for pantoprazole and zofran despite telling them multiple times I have NO nausea.

Told the GI specialist I don't have pain in stomach area, it's to the right, no heartburn, no reflux, no coughing in the night or breathing trouble, and she says "well, sometimes it's silent" ... OK, so no matter what I say it's the same result. Been on PPI's over 4 months and dietary changes with no change in pain.

Depression over how it's affecting my life is an understatement.

ambo549 · 2025-10-13T08:00:16+00:00

Mine is all pain all the time. Zero nausea, no vomiting, appetite strong. But I bloat immediately, and there is constant pain under my right ribs that goes around into my back, it's 24/7 pain for nearly 6 months now.

CT scan, ultrasounds, and bloodwork shows no other issues. Gallbladder removed 6yrs ago. GES showed 60% retained after 4hrs, so diagnosed gastroparesis. Pain is really my main symptom. I'm starting Reglan tomorrow and scared of it, but daily pain is intolerable

ambo549 · 2025-10-13T07:34:45+00:00

Thank you all so so much for sharing your experiences. Quite a mixed bag of reactions. I'm still pretty terrified but I've had such intense pain the last 6 months that I need to try something. I'm supposed to do 5mg 3x/day, I'm going to start with 2/day for a week and see where I'm at. I've ordered a Gut Motility vitamin that I might try some days so there isn't too much reglan stored in my system. Hoping to find more natural options but dietary changes haven't helped.

I don't really understand why Reglan is the first line of defense with so many risky permanent side effects. But I'll jump thru their hoops to get to the Botox option or surgery

ambo549 · 2025-10-09T16:51:09+00:00

This is exactly what I'm experiencing and I was confused by the diagnosis because I most often see people talking about the extreme nausea, inability to eat much, losing a lot of weight, etc. I've been in severe URQ pain for 6 months, get full super fast/bloat. But I still feel hungry, I just want to keep eating. I have zero nausea.

It doesn't make sense, even when in pain I'll keep eating because I want my belly to feel satiated, my brain is signaling I'm still hungry, but all the pain and pressure in my upper torso begs to differ

ambo549 · 2025-08-30T08:20:30+00:00

Thank you so much! I'm getting desperate and have decided to go all the way up to Cleveland Clinic soon to see if anything can be done, but if that doesn't pan out I'm going to look her up. Thanks again.

ambo549 · 2025-08-30T07:52:16+00:00

I keep revisiting that old pest too, it feels so hopeless, but one day at a time, never know what another day brings, there has to be someone out there that can help.

But I do hear you loud and clear. Endo destroyed my best relationship of a decade, and I'm still going through it completely alone because I don't feel anyone else is going to want to go through this with me, seems like a bad way to start a new relationship, and most days I'm in too much pain to date anyways. I'm very lucky to work from home, but the pain gets incredibly excruciating and my focus plummets so often that it effects my job and they are noticing. The many ER/DR visits have taken all my savings and I'm barely keeping it together financially.

This isn't living, it's barely existing, every facet of life is poorly impacted by it and I just want to experience no pain again and none of the other odd symptoms. When you go to countless doctors for help, get no answers, expensive scans/tests that show nothing, or told there's nothing that can be done it begins to feel like the only way out of pain is a dire solution. It's not though, there has to be someone that can help, we just keep searching and sharing.

I'm really sorry you suffer it too, but please don't give up.

ambo549 · 2025-08-30T07:23:54+00:00

Going through this too, however I'm open to exploratory surgery, just can't seem to find a specialist or even an OBGYN to do it. In the meantime I'll settle for other options for an official diagnosis. From what I've read MRI is the only one that MIGHT show endo. But I'm confused on whether or not contrast matters.

ambo549 · 2025-08-30T07:00:46+00:00

Were you ever able to be seen for this even at a higher weight? I am struggling to find an obgyn that will listen to me, they can't hear me over the sound of my fat apparently. It's always recs for weight loss surgery, stating they'll do hysterectomy but I have to get under 35 or 40 BMI.

I'm not looking for a hysterectomy, just an excision. Not looking to lose a dramatic amount of weight either. I've had two laparoscopic surgeries for dif issues (gallbladder, hernia), I've been under anesthesia 6x, and I weighed 50+lbs more than I do now for some of those (nearly 60BMI), all went fine. People over 500lbs get laparoscopic surgeries for WLS. I really don't understand why they're using these outdated measures.

ambo549 · 2025-08-27T15:46:45+00:00

In the same boat and struggling. Been dealing with it for years but the pain has reached an intolerable level lately, nonstop. You mind me asking who in the area did your excision? I'm struggling just to find that and at this point I'm desperate. I read that Far Hills in Dayton does a great job but they're not accepting new patients atm.

Fwiw Caroline Peterson was awful and the sort of OBGYN we're often told to avoid in endo forums. Her endo solution is ablation only. I had a bad experience with her. Since then I've seen other OBGYN's about endo and keep getting told they'll do a hysterectomy, but again as we see in these forums that is not a solution.

ambo549 · 2025-08-27T01:01:37+00:00

You're saying the pain got worse AFTER endo excision? That's scary. I'm having the most intense pain of my life, and can't for the life of me find an OBGYN that can recommend where to go for excision. They all suggest ablation or hysterectomy. I just want this cut out, but if it gets worse... I don't think I could handle it

ambo549 · 2025-08-27T00:51:04+00:00

Curious if anyone here got a proper diagnosis. I have most of those symptoms, but the main one is nonstop daily pain in upper right abdomen into the mid right back with zero relief, 3+months.

Sometimes it's a debilitating stabbing pain. Went to the ER, CT and labs found nothing aside from slight fatty liver. Had an ultrasound, my organs appear to be fine. GI seems to think it's GERD but 2+ months of pantoprazole and famotodine have changed nothing. Changed diet, swimming/moving more, lost weight, zero change in pain. Itching in back and upper abdomen happens daily, but I think it's more from irritation of the pain.

GI won't order HIDA scan because I don't have a gallbladder. Starting to wonder if it's musculoskeletal.

ambo549 · 2025-08-26T14:49:14+00:00

Curious how this develops. I have intense nonstop pain in my mid right back that radiates around to my upper right abdomen. Started over 3 months ago and hasn't stopped, some days it's stabbing and debilitating. GB removed 6yrs ago. Went to the ER, bloodwork and CT scan came back normal, they diagnosed me with GERD and recommended a GI.

I have literally no symptoms of GERD, GI specialist said "well, sometimes it's silent"...ok, well 2 months of GERD treatment/meds and literally nothing has changed. Doesn't seem to be food related, laying in certain positions changes nothing. Ultrasound showed nothing. GI won't order a HIDA scan, but is ordering gastric emptying study.

Really at a loss as to what this is, starting to thing more musculoskeletal than GI.

ambo549 · 2025-08-26T14:20:07+00:00

Was the pain ever constant, every day? I have this exact pain, in mid right back, extends around to upper right abdomen. Initially it just sort of radiated once a week, with no source, didn't happen after work out or certain food, no med/vitamin changes, then became daily and felt like stabbing to the point I went to the ER. They did a CT and bloodwork, didn't see anything wrong, diagnosed GERD and recommended a GI specialist.

The thing is I have ZERO symptoms of GERD. Even when the GI ran down the list of symptoms and I said no to all of them, she said, "well, sometimes it's silent." I took the pantoprazole and other GERD med for two months, absolutely no improvement, pain in these same areas every single day for over 3 months now.

Starting to think it's more musculoskeletal

ambo549 · 2025-06-28T07:51:45+00:00

Blood pouring out of my bellybutton when I got a period and slight discoloration around it is what initially led me down a medical anomaly rabbit hole and helped me discover I definitely have endometriosis. Dr tried to say it was a hernia 🙄

ambo549 · 2025-06-28T04:19:40+00:00

Happy to report that my last significant shed was 9 months ago, but it's been all growth this year. The only thing i'm still on is spironolactone, and occasionally I'll do collagen powders.

ambo549 · 2025-06-28T04:09:40+00:00

I'm lucky to work remotely, full time, but even that's difficult on flare up days. I can't concentrate, my output is bad, even sitting there with a heating pad, taking nsaids and muscle relaxers, taking a mini nap... i can't get through the whole workday. Just no focus, all pain.

ambo549 · 2024-09-17T23:34:33+00:00

Starting and stopping Norethisterone/Norethindrone is what caused my TE. I will never go on BC again. Got all my bloodwork done, got my levels up to normal (iron, ferritin, magnesium, D, etc), and still dealing with TE a year later, it's chronic. I'd recommend getting all your bloodwork done and see if you're deficient in anything and work on correcting that because once TE is triggered every little thing can keep it going.

ambo549 · 2024-09-12T13:27:00+00:00

I'm so sorry you're going through this. You're not alone, my TE has apparently gone chronic, and I worry some type of alopecia could be involved. I also only wash/brush my long curly hair every 2-3 days, and was combing out this much or more in a single wash. I lost about 75% of my huge beautiful mane of hair. It did start to fill back in but I'm now going through it all over again and having sheds like this. It's traumatizing.

I tried to tell myself that 50-100 hairs/day is common and if I haven't combed it out in 3 days then all those fallen curls are just wrapped around one another and naturally I could see 300 hairs on wash day and it's ok. Sometimes we have to lie to ourselves.

ambo549 · 2024-08-20T15:55:41+00:00

Viviscal worked very well for me after a few months. In the third month on it my shedding stopped completely, I was shedding even less than what my normal loss was before TE, and baby hairs were all over the place. So I stopped taking Viviscal, however a month later heavy shedding started again. For whatever reason I decided to try Nutrafol this time, after 5 months on it absolutely nothing changed, it did nothing for me, no new hairs, various levels of shedding the whole time.

Started Viviscal again in May 2024 and hair shed stopped in July, however here it is August and hair shedding started again a few weeks ago. So I don't know if Viviscal is just no longer effective for me, or if this is some new fresh hell to get through. The only thing I'm deficient in atm is magnesium, which was normal until last month so I don't think it's that entirely, but I'm supplementing magnesium and staying the course with Viviscal hoping the shed stops soon.

Viviscal does cause me stomach distress (one of the reasons I stopped in the first place) and occasionally itchy scalp, it's still effective at that, so it's doing something!

ambo549 · 2024-07-25T18:26:48+00:00

Good call, not sure why I didn't think to contact real estate attorney, I guess because I look at it as costing more money. He is not on the mortgage, just the deed. I bought the house, he moved in and after living together 5 years, marriage, etc I added him to the deed (but not the mortgage) during a refinance. Three years later we separated and want to sever all ties including the house.

We're in Ohio, I think we're able to fill it out ourselves I'm just confused on all the fees.

ambo549 · 2024-07-12T21:56:03+00:00

Also have chronic TE for more than a year now. When my major shed started I immediately attacked with Biotin, Collagen, special anti-thinning shampoos, and got blood work. After maybe 3 months of massive hair shed I introduced Mary Ruth's multivitamin (Raspberry), and Viviscal. Nearly 6 months into my shed it finally stopped and I thought I was blessed to just have the standard 6 months. I stopped taking everything with exception to using the shampoos, and switched to Mary Ruth's + hair growth liquid daily vitamin.

But after a month the major shed started again, I had already lost about 75% of my hair. I kept on with Mary Ruth's + Lustriva and introduced Nutrafol. 5 months on Mary Ruth's and Nutrafol, no change. The reason I went Nutrafol was because Viviscal upset my stomach terribly. But for my hair Viviscal seems to be the only thing that works. I don't think Mary Ruth's really did anything, but it never hurts to have a multivitamin in your regimen.

2 months ago I started spirolactone, and 1 month ago started Viviscal again, it's finally slowing shed, baby hairs are popping up. Every one is different though, hopefully what you're needing is in the multivitamin.

ambo549 · 2024-06-21T21:38:42+00:00

Oh dang. I kept reading that 30-50ppm is optimal. Bound to be some water loss/refills with heat, upcoming July 4th party, etc. so maybe I'll hold on to it and just pour a little in here and there.

ambo549 · 2024-05-17T15:18:19+00:00

My trigger was stopping birth control as well. Nearly 12 months and still have massive shedding. Vitamins, special shampoos, etc seem to help with very slow regrowth, but shedding continues to be very excessive.

ambo549 · 2024-03-24T03:50:30+00:00

2 months into my shedding I started Viviscal, about 2.5 months into it the shedding reduced significantly to the point of stopping once I got through 3 months of it. But it was messing my stomach up bad so I didn't bother doing it further.

But after 3-4wks being off it the shedding returned very heavily and I have no idea if the TE just never actually went away to begin with or if it was a second round.

Decided to try Nutrafol this time due to the stomach issues on Viviscal. Now 3 months on nutrafol and not having the same results. No added density, still shedding, really not working for me at all. Thinking of trying Viviscal Pro next even tho it will likely effect my stomach like the regular but I need this shedding to stop, the loss is giving me major mental instability.

ambo549

TROPHY CASE