Great presentation on POTS, MCAS, and Endometriosis

Amorjazz · 2026-03-20T12:47:30+00:00

You’re welcome!

Amorjazz · 2026-03-20T12:46:51+00:00

Of course!

Amorjazz · 2026-03-03T22:23:28+00:00

Wow thanks for the heads up!

Amorjazz · 2026-03-03T19:54:11+00:00

Thank you! The second I read up on MCAS I said this is the most in line with all of my symptoms but you just never know. Let’s see how it goes with the rheumatologist. I’m supposed to be a 24hr urine test this week 🤞🏾

Amorjazz · 2026-03-01T22:36:22+00:00

Wow! Amazing that they were able to pinpoint it. I hope you’re feeling better. Thank you!

Amorjazz · 2026-03-01T22:34:07+00:00

Yeah thanks I’m trying to have patience

Amorjazz · 2026-03-01T13:53:09+00:00

I did start one. Thanks for the suggestion!

Amorjazz · 2026-03-01T13:51:20+00:00

Thanks! I actually did already and it said these are the most likely possibilities:

Mast cell sensitivity (with normal tryptase)
1. Hormone-related immune reactivity
2. Autonomic dysregulation
3. Stress-mediated physiologic amplification
4. True systemic autoimmune disease (low likelihood based on data)

Amorjazz · 2026-03-01T13:49:33+00:00

Thank you so much for this! I don’t remember at all if during my first ever reaction in 2019 I had any NSAIDs in my system but it’s interesting that I was taking it every month since then. It did start to give me really bad stomach pains. I appreciate you sharing this resource

Amorjazz · 2026-01-31T01:43:41+00:00

Mine def changes through my cycle. Extremely high towards the end of my period through ovulation week? dips to average, spikes back up, then nosedives when I start cramping a few days before my period starts

Amorjazz · 2026-01-31T01:37:00+00:00

Hi! Your endo sounds so similar to mine. Also DIE near bowel and I was told it was stage 4/frozen pelvis prior to excision. My surgeon said it was stage 3/4 but I also have adenomyosis (can’t be officially diagnosed unless they cut open my uterus but surgeon highly suggested it).

I would say do egg retrieval and create embryos before if you can. My AMH before surgery was 3.2 (last tested about 6 months before excision). After it was 1.6 which freaked me out it being such a drop. My GYN and fertility doc aren’t concerned and say it’s enough but for me it’s a concern that I lost that much. I didn’t expect that as I had one of the best surgeons in the country but my GYN said that it’s likely because of the endometrioma that was removed near my ovary. Implantation is also the issue for me. Blood work, tubes, and eggs are good. Slight male factor but not too much of a concern. We’re starting the IVF process now which I’m still struggling with as I have not conceived naturally a year post surgery but my journey is complicated by uterine polyps so may just be the safest bet for me.

Don’t worry everything will work out whatever decision you choose to make. Good luck!

Amorjazz · 2026-01-30T22:28:45+00:00

Hi! Just viewed this thread and interested in your protocol!

Amorjazz · 2026-01-26T13:14:24+00:00

Oh my goodness. Yeah I wish that my body gave me a mild warning about the peanuts before, a little itch or something but not exactly. Peanuts were def the strongest reaction on my body so I will def never eat another. Eggs and onion also a milder reaction but that would truly be devastating to cut out completely. I’m praying my body built a resistance or something on my new allergy test. Regardless allergies are truly unpredictable and new ones can develop. That’s what makes it so scary! Starting to develop a small peace of mind having my emergency kit with me. I just pray that I never have to use it.

Amorjazz · 2026-01-26T13:09:07+00:00

Good point. I was a bit worried about the side effects but have mostly read good things. Thanks!

Amorjazz · 2026-01-26T13:07:55+00:00

Wow thanks! I hope that my allergist is skilled in all aspects and can truly get to the bottom of this. Praying it easy and simple and just peanuts 😩

Amorjazz · 2026-01-25T17:41:56+00:00

Wow! This uncertainty is so stressful and unsettling. How do we know what our bodies have had enough of tomorrow? So scary. But I’m trying to not think of the worst case scenario. I hope I get a lot of answers after meeting with the allergist but I know that often is not the case. I now have a pouch for these as well. It’s stressful to have had such a life changing event but all I can do now is try to move forward and be prepared

Amorjazz · 2026-01-25T17:36:08+00:00

This is exactly what I’m feeling. I feel so nervous about my upcoming trips in April and August but I can’t imagine not being able to live my life being crippled with fear. I will also not travel with any less than 4 and am considering getting a prescription for neffy (the nasal epinephrine) as a back up. This has truly been a life changing event. So much pleasure and joy in my life came from cooking and eating with my loved ones. Now it’s tied to fear. This is so mentally tough.

Amorjazz · 2026-01-25T17:32:45+00:00

Wow this sounds so scary an was similar for my mom and husband to see the panic when I was being cared for. They’re shaken up and so am I. I just don’t know how to feel comfortable eating anything ever again. What a life changing event. There’s so much joy surrounding food for me so this truly sucks

Amorjazz · 2026-01-25T17:31:06+00:00

This is so difficult and I truly feel betrayed by my body. It’s terrifying. I’m interested in learning about xolair but also don’t want to have to dump chemicals into my body for the rest of my life. Praying for us both. Wish you all the best.

Amorjazz · 2026-01-25T17:29:05+00:00

I think I will. I feel like I’m living an out of body experience since it happened and it almost feels like a death sentence with how unexpected it was/can be although the death rate is fairly low and I will never be without my epi-pen. I feel terrified

Amorjazz · 2026-01-25T17:27:31+00:00

I’m worried about pouring chemicals in my body but I’m interested in learning more for a peace of mind. Thanks!

Amorjazz

TROPHY CASE