u/what_sm

I am finally going to seek treatment for RCPD. This is my story as to why now, at 30 years old.

This morning I was thinking, "I know I have RCPD, but it doesn't bother me that much anymore. It's not a priority."

Then I thought to myself: WHAT IF I am just super uncomfortable, but I don't know it because it's the ONLY way I've ever lived and just had to cope. WHAT IF my doctors gaslighting me for my entire life has caused me to further minimize my own pain?? WHAT IF I were able to finally BURP???!

For context:

I've not been able to burp for as long as I can remember. Symptoms were worse as a child, but I think it is only better now because I avoid certain foods and activities like watermelon, citrus fruits, drinking from straws, etc. I can ONLY vomit when inebriated in some way, shape, or form and it's still a struggle, even then.

So it turns out that all my life, my doctors were gaslighting me about every single painful condition I had and I believed them. I believed them so much, that I gaslit myself. I wasn't even diagnosed with endometriosis until I went into the hospital for 3 days for a small bowel obstruction that they couldn't find the cause of. I didn't even go to the hospital for my bowel obstruction until hours after it started bc I just thought it was my period. That's how messed up my pain perception is now.

I'm 3 weeks post-op from endometriosis excision surgery where they made an incidental finding that I had embryological adhesions in my intestines. The surgeons said it was an extremely difficult procedure. My embryological adhesions had endometriosis inflammation adhesions. A LOT of it was fibrotic. It was on every pelvic organ I have. I ALREADY feel a crazy difference with my GI symptoms. I DON'T HAVE IBS; instead it turned out that my intestines were glued together, causing major dysfunction that grew more and more severe with progression of endometriosis!

ON TOP OF ALL THAT, gas has ONLY ever been able to exit my body 1 way.

So now that I know that the pain scale is severely warped for me due to being gaslit about the chronic pain that was not clinically recognized for my entire life, WHAT IF I could burp? What could it change?

I already hit my out of pocket max this year, so if they cover the procedure, WHY NOT?

WHAT. IF. I. COULD. BURP.

7 months ago I had a small bowel obstruction (while on my period). My small intestine was physically twisted on itself. The pain from that was the same as my worst period pain, and in fact turned out to be secondary to endometriosis bc my intestines started to slow down on my period and were all tangled and mangled in adhesions from 17 years of undiagnosed Endo inflammation. In fact, the only reason I ended up seeing a specialist was bc of the obstruction.

I waited the entire day to go to the hospital bc I just thought it was cause I was bloated and on my period. It's when I could not find any position, heat, pain medicine to even TOUCH it that I got worried and called my mom. My period pain usually lasted for hours, but always ended up improving somewhat with heat + medicine, and that's how I could tell the difference. My mom told me to just go to the hospital bc it's better to be safe. I started vomiting everywhere once I got there (not normal on my period, I don't vomit easily bc I have c-rpd, a condition where you can't burp 🙄😅) and that is when I knew I'd made the right choice. They told me if I'd waited just a few hours more, I would've gone septic and that part of my intestine would have died and I'd have needed open surgery. Instead, I got the ol' NG tube for 3 days (which was the most traumatic experience in my life bc there were uhhhh... complications inserting it).

It is estimated that 0.1% of endometriosis patients have bowel obstructions due to endometriosis. So, yeah... No one was able to tell me shit about why that happened to me until I got to my specialist 3½ months later (mostly bc it's so rare to have adhesions with no prior surgery, but also bc my endometriosis was undiagnosed at the time 🙄).

7 months later, I've had my surgery, they've freed my intestines from their toxic relationships with my left ovary and uterus, they've taken out the Endo. It may be TMI, but Ive pooped more in the last 6 days post-op than I did in probably all 7 months of mangled, tangled, and inflamed intestines (I suffered SEVERE constipation, I was averaging pooping once every 3-5 days most weeks, especially before I started continuous birth control to stop my period).

Side note, when I was in the ER for my bowel obstruction, they gave me Dilaudid (7x more potent than oxy) intravenously and it took my level 9 pain to a 3. Soooo, ya the SBO hurt and my periods hurt. This is all for reference to my pain scale.

I'm feeling a LOT better so far. This disease is so horrific and I'm happy to be done with it, at least for a little while. My realistic goal is to make it at least 5 years before another surgery, if ever 🤞

I teach 8th grade science and am going to be out for about a month for my excision surgery and recovery. I told my students about being out and why. I told them that I have endometriosis and told them to look it up in their own time if they wanted to know more about it (surprise suprise, they did)... Then I made everyone pause after all of their questions and told the girls that if they EVER have bad pain from their cycles, PLEASE go to a doctor. I explained what constituted normal discomfort from "bad" period pain. I told them to go to a different doctor UNTIL they find one that will take their pain seriously. 1 in 10 women have this disease, so odds are that at least 6 of my students will have it.

Not surprised that a few came up to ask me questions after I was done giving this talk. They said they'd been to the doctor about it but they just said x, y, z red flag thing (the kids didn't know they were red flags, of course). I made every single kid that inquired privately a hand out about what endometriosis is, and how to strategically talk to their doctor about it because damn it... They deserve answers and I'm SICK of reading the same story over and over again on this forum about late diagnosis. I was diagnosed 17 years into symptoms, and now I have DIE. They fit me for an OSTOMY BAG just in case they have to resection my small intestines.

These girls have already started to gaslight themselves about their pain and think it's just something they have to deal with. NO. ENOUGH IS ENOUGH.

It made me feel SO GOOD to be able to tell them their pain is not normal and maybe help them some way on their journey to answers. There are a lot of hard days, but today teaching felt like the biggest privilege in the world.