Porphyria: feeling of stomach being sawed in half

Hi @propitious You must be at your wit’s end with worry for your daughter! I’m sorry to hear she’s having such horrible stomach pains. Hopefully the hematologist is on the right track for giving her some normalcy in her life.

I’m not a medical professional and members in Connect aren’t able to diagnose or offer treatment. However, we can share our experiences which may help others. I had a friend who was experiencing very similar issues as your daughter. Took years to diagnosis but she had Celiac Artery Compression Syndrome. With surgery, she is now living pain free.

I’m going to post several articles for you to see if this is similar to your daughter’s experiences.

This article from the University of Chicago MALS program.
https://www.ucmals.com/diagnosing-celiac-artery-disorders/
There are also several discussions in the forum with other patients (or caregivers for them) posting in conversations, like @sandyskw13 whose 20 year old daughter has symptoms much like your daughter.
Possible MALS and/or SMAS
https://connect.mayoclinic.org/discussion/possible-mals-andor-smas/
Another from member @cowtownusa.
Update on MALS situation
https://connect.mayoclinic.org/discussion/update-on-mals-situation/
From the MALS foundation.org.
https://www.malsfoundation.org/what-is-mals
There are more discussions which can be found by typing in MALS in the top search box.

I may be off base, just wanted to give you another potential lead. Has your daughter been seen by a vascular surgeon, interventional radiologist or gastroenterologist who could check for MALS?

Saw your comment. You may want your daughter checked for several vascular compressions. MALS is only one of them, there is another called Nutcracker and several more. You need a doctor familiar with vascular compressions, otherwise you will go round and round in circles. My daughter is 22, has been dealing with similar abdominal pain for just over 3 years, center, above belly button. We have not completed full Mals testing yet, but have discovered Nutcracker syndrome so far, which is a compressed left renal vein. Many who have 1 compression, may have more. There are several compression groups on Facebook, you can connect, ask questions, find doctor's. MALS PALS, is one to start.

So interesting! I (60s female) also thought I had porphyria with similar symptoms to your daughter's but it turned out I have three different pelvic venous compressions like the other posters have mentioned: Nutcracker Syndrome, MALS, and May Thurner Syndrome. I noticed on my vaginal ultrasound report (one of many unpleasant tests trying to figure this out) the phrase "congested ovarian vein" which no one else had even mentioned to me. Researching that led to the pelvic venous compressions (but when I told the vascular surgeon I saw here in the States he said "no way is that causing your problems!")

My search for help took me to Dr. Tomas Scholbach in Leipzig, Germany, who is pretty much the world expert on pelvic venous compression issues: https://scholbach.de/#gsc.tab=0 I actually went to see him two years ago (and paid out of my own pocket) since no one here at home knew anything about these issues (or believed me, sadly.) I also went through the "IBS, functional gut, health anxiety, psychosomatic" run-around which I'm sure is even worse for young women! Dr. Scholbach and his surgical partner have basically saved the lives of many patients, you can read their testimonials (and even some letters from other physicians) here: https://scholbach.de/what-patients-say-continuition#gsc.tab=0

Because of my age and moderate symptoms (compared to the awful things many of these young women experience) I won't undergo surgery but am instead using exercise, supplements and low-dose aspirin as therapy and I am feeling much better! A big plus of seeing Dr. Scholbach for me was I now have a record of a three-hour ultrasound exam that I have shared with my docs here at home (and which resulted in a few of them apologizing for "not having that knowledge.") Sure wish they'd apologize for having called me crazy! 🙂

Wow!! Thank you for the information. I have not heard of this illness but shall research further with my daughter. The interventional radiologists have only looked at her picc line. We will definitely get some info together before her next follow-up with the hematologist. Thanks!

I just want to say that I am very grateful to everyone who responded. I am not on social media at all and don't really know how this all works. (I didn't know which reply button I was supposed to use; the top blue one or the bottom grey one) Your responses within hours of posting my questions has completely awed me. Thank you! Wishing perfect health, peace and love to all in 2025.

Good morning, @propitious. You did just great for your first foray into social media. Connect is a safe environment to seek help and support from others.
I know it can take time to get the wheels of medicine moving so I hope you’re able to get some help for your daughter soon. As you can see, there are many of us concerned right along with you.
Please stay in touch and will you let us know what you find out?