u/MrsCoffeeMan

I was diagnosed with FPIES - Milk Protein last month. I’m a 38F, my symptoms started 2 years ago but I may have also had it when I was born as I was diagnosed as “lactose intolerant” at the time, but it went away after a few years.

I’ve noticed this subreddit and the majority of resources and supports for FPIES are predominantly infant/child focused, which is fair since my understanding is it’s only fairly recent that it’s been recognized that adults can also have it. But I’m not sure if others feel the same but it can feel kind of alienating seeing every discussion/article/etc being directed to parents. Which I’m wondering if there are any resources/supports/groups etc, that are more adult focused that anyone is aware of or if there is any interest in creating one? Or maybe there are so few of us out there?

I thought I would share my experience because I’ll be honest going into my surgery after reading lots and lots of posts about people’s post op experiences, I had very different expectations than what reality was for me.

Some background information: I’m 38F with Endometriosis and Adenomyosis as well as a handful of other chronic illnesses. I had a total larascopic hysterectomy, bilateral salpingectomy and excision of endometriosis. We were able to keep both my ovaries and I am staying on Norlutate (been on it for 4 years) to prevent menstruation in hopes to keep any endometriosis under control. This is also my 4th surgery, 3rd abdominal surgery.

Day of the surgery was the hardest. I have a history of extreme nausea and vomiting post anesthesia, I again woke up nauseous and dry heaving but it was managed with Ondansetron. I barely ate after the surgery due to the nausea and because I struggled to stay awake the first 24 hours. I only woke up to pee and then I’d fall asleep while on the toilet. I went home that evening.

The first 48 hours I constantly felt like I I had to pee, so I was getting up at least every hour. I went home with Tylenol no3 and Naproxen. I took both until the morning of day 3 just to be safe but I honestly didn’t feel like I needed them by mid day 2. After that I switched to just naproxen to be safe. Day 5 I stopped pain meds completely.

My pain was most noticeable day 1, with cramping. My pain never got nearly as bad as it was when I’d have endo flares. The main reason I stayed on pain meds despite feeling like I could manage without is because with past surgeries I had a habit of stopping too early and then taking pain meds when it was already too late.

I never ended up experiencing any gas pain by some magic. Other than cramping I did have a sore lower back. Now I get occasional light cramping/pulling sensation.

The day after my surgery I walked a block, I did the same the next day. Today I’m at 2 kms at a decent pace.

Overall, I’m shocked at how good I’m feeling at only a week out. When my surgeon went over restrictions prior to the surgery I was surprised by how minimal they were compared to my previous surgeries.

This isn’t meant to dismiss other peoples experiences that are different than mine. I recognize I am very fortunate that my recovery has gone so well and there are many factors that can result in varying experiences. I just wanted to add mine to the less common positive experience posts.

I hope this helps!