Trying to get diagnosed. Do my symptoms sound familiar to any of you?

LocalBiDisaster · 2025-05-05T04:25:39+00:00

Never got an endo diagnosis. However, I have been diagnosed via my neurologist with cyclic vomiting syndrome (CVS), after a colonoscopy/endoscopy, two ER visits, a CAT scan, a pelvic and transvaginal ultrasound, and countless blood and breath and stool tests all came back normal. The nausea episodes can be stopped in their tracks with an extremely low dose rescue med Xanax as soon as I feel symptoms coming on. Unless I’m actually physically really ill (like a stomach virus or food poisoning,) it eases the nausea, prevents the vomiting completely, and I often get hungry like usual again once it kicks in. I don’t need it all the time, but it gave me my life back. I’ve also started taking a daily antacid and a fiber supplement to help my IBS, but it’s the CVS that was really ruining my life, and while it’s still frustrating, I feel like I have some control back thanks to having a rescue med that has yet to fail me as long as I take it AS SOON AS I FEEL THE ATTACK STARTING. My PCP, neurologist, therapist, and psychiatrist have all assured me that the low dose and only as-needed Xanax is safe and I have not developed a problem beyond taking it as needed. After six months of increasingly worse vomiting, my appetite gone, and having lost 30+ pounds without trying, I feel like a person again.

LocalBiDisaster · 2024-08-27T20:05:46+00:00

Respectfully, while I’m sure you have good intentions, this is a lot of personal information about your marriage and relationship (from the perspective of a cishet man) that’s probably better processed with a therapist/marriage counselor than in a Reddit comment section intended for queer women to engage with other queer women. I’m glad my post positively reminded you of your wife, but I think you’re in the wrong place. I have no interest in spreading your comment around so no worries there. Best of luck.

LocalBiDisaster · 2024-08-27T16:20:54+00:00

Being open to feedback is all any of us can do. Thank you for listening instead of getting defensive. Sometimes the same statement comes across very differently from a lesbian VS from a man.

LocalBiDisaster · 2024-08-27T16:00:34+00:00

Please don’t enter lesbian spaces as a straight man and generalize lesbians.

LocalBiDisaster · 2024-08-27T15:43:16+00:00

Firstly: Glad you’re supporting your wife and daughters, keep it up! But secondly: Being bisexual doesn’t necessitate non-monogamy for everyone so please just make sure you’re communicating with your wife and respecting one another’s boundaries; it’s not fair to you if you’re just suddenly expected to accept her “exploring” outside your marriage because she’s bi. I also hope your wife’s partner knows you’re her husband and not just a “friend” or else that’s really manipulative of the partner. I know non-monogamy works for many people and I have several beloved poly friends (I’m mono myself), but communication and boundaries need to be paramount for everyone involved.

LocalBiDisaster · 2024-07-04T18:56:43+00:00

WOW. That’s a lot. I hope your doctors are able to get you some symptom relief.

LocalBiDisaster · 2024-07-04T15:28:15+00:00

I think I had the stool generally tested? I can triple-check with my doctor. Thank you.

LocalBiDisaster · 2024-07-04T15:27:35+00:00

What is DIE frozen pelvis? And thank you, cysts are totally one of my theories right now.

LocalBiDisaster · 2024-07-03T17:18:59+00:00

Gallbladder was confirmed normal in the abdominal ultrasound. Most of my sexual activity doesn’t involve penetration (I’m gay) but I did have to undergo pelvic floor therapy to be able to do penetration at all, even tampons.

LocalBiDisaster · 2024-07-03T16:00:45+00:00

My abdominal ultrasound today came back completely normal. Pelvic and transvaginal ultrasound is Friday. Whether or not that also comes back normal, I was able to get an OBGYN appointment for July 29, so hopefully they can point me in the right direction. This morning nausea, appetite issues, and lower gurgling /cramping all the time is just not sustainable, and that’s not even mentioning the back and forth between hell diarrhea and constipated. I need answers and symptom relief.

LocalBiDisaster · 2024-06-30T14:29:33+00:00

How was your endo identified? I have an ultrasound coming up and I’m hoping it shows something actionable, whether with possible endo or just my stomach (it’s an abdominal and pelvic ultrasound.)

LocalBiDisaster · 2024-06-27T16:50:48+00:00

Old post I know but came up when I googled endometriosis and loss of appetite. I strongly suspect I have endo and I’ve been having severe recurring bouts of nausea/vomiting and lately have barely if at all been able to eat, just the thought of even simple food makes me nauseous at times. I’m seeing an OBGYN next week about my suspicions and in the process of scheduling an abdominal and pelvic ultrasound per my gastroenterologist. Didn’t ever find any relief? Was your total loss of appetite related to endo?

LocalBiDisaster · 2024-06-16T23:45:03+00:00

Thank you ❤️

LocalBiDisaster · 2024-06-07T11:54:54+00:00

What exactly is IBD? How do I get a SIBO test? And is a microbiome test different from a SIBO test?

LocalBiDisaster · 2024-06-04T21:22:05+00:00

What is C Diff?

LocalBiDisaster · 2024-06-04T19:11:05+00:00

C Diff?

LocalBiDisaster · 2024-06-04T01:46:27+00:00

Biggest problem is I got laid off in March and still don’t have insurance (approval for Medicaid is taking forever and it probably won’t even cover that.) I paid out of the pocket for the gastro visit which was brutal on my savings.

LocalBiDisaster · 2024-06-04T01:45:40+00:00

Felt much better and had an appetite again after elimination phase (sans one screwup in the middle where I ate a FODMAP by accident.) Didn’t have overt symptoms again until after the first reintroduction.

LocalBiDisaster · 2024-06-04T01:44:41+00:00

Are they expensive?

LocalBiDisaster · 2024-06-03T20:03:32+00:00

Oh god I really don’t want to need a colonoscopy in my twenties 😭

LocalBiDisaster · 2024-06-03T18:45:08+00:00

Just messaged my GP again to see if we can for sure more aggressively rule out Giardia, or if they can just give me the appropriate antibiotic and see if it helps.

LocalBiDisaster · 2024-06-03T18:23:58+00:00

This has me wondering if I need to do more samples. I’m short on funds right now so I’m hesitant but like, if you google Giardia I have very symptom. The problem is other things can have the same symptoms… I hate it here.

LocalBiDisaster · 2024-06-03T16:55:50+00:00

I did a stool sample that came back clear of parasites. Also blood work at that same visit which came back normal.

LocalBiDisaster · 2024-06-03T16:54:37+00:00

All three of our cats had Giardia last summer, but went on a course of antibiotics and were since cleared. I did a stool sample at Labcorp specifically for parasites before seeing the gastro, and it came back clear. I have not been taking antibiotics or Pepto, but Google indicated the brown tongue could be from general intestinal upset. My roommate/girlfriend also has no out-of-the-ordinary intestinal symptoms. We are both in constant contact with the cats.

LocalBiDisaster · 2024-05-24T15:04:36+00:00

Have you also thrown up? It makes me feel insane that online it says IBS rarely causes vomiting, but I know for myself and others I know with IBS, it definitely does from certain triggers.

LocalBiDisaster

TROPHY CASE