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Hy.someone from endometriosis problem with reflux and spasm esophagus?? Have got this problem nothing helps .thanks

  1. Hi Alexalexa, I'm sorry you're having these symptoms. You're definitely not the only one who experiences this. First, if you haven't already, I'd suggest scheduling an appointment with a gastroenterologist, preferably someone who is familiar with endo. Along with a clinical dietitian, mine helped a lot with my issues. (There are also specialists who can identify endo on the bowels, which can cause digestive issues, but I've never had access to that kind of specialist.)

    With that said, I get delayed stomach emptying near my period, which makes me feel very full on small amounts of food. I'll literally burp my food back up if I eat more than the size of a small sandwich. My doctor, a gastroenterologist, says it's likely related to hormonal changes that slow everything down โ€” but that's just his best guess. He told me these shifts happen to everyone who has a period and can cause issues all along the digestive tract, which means the mouth/throat all the way down to the lower intestines, colon, or rectum. That can cause symptoms such as reflux or diarrhea.

    My GI doc doesn't think my symptoms are related to endo lesions, per se, but people with endo are often very sensitive to hormonal shifts. I definitely am. I have a lot of nervous system issues during the last 2 weeks of my cycle. My doc looked inside my throat and stomach with a camera (endoscopy) and took some samples to make sure nothing was structurally wrong and to rule out celiac or something like GERD (gastroesophageal reflux disease). Everything looked fine.

    After that, I worked with a dietitian to identify my triggers. And what really helps me isn't avoiding certain foods but to eat small meals more frequently โ€” that's 1-1/2 cups of food or less at a time.

    I'll leave some articles below from some of our other advocates that might be helpful. And please keep us updated on how you're feeling. Wishing you well! - Keri ( team member)

    1. I have had this literally my entire life and never had an explanation for the cause. I have read that it is a symptom of endo regardless of whether you have endo on you stomach. If your vagus nerve is getting signals that something is wrong it tells your stomach to produce acid and your heart to beat faster etc. So both my cardiologist and gastroenterologist are interested to see how my endo surgery influences my stomach and heart rate. I also finally went on Cymbalta due to the extreme anxiety I was going through dealing with finding proper health care and dealing with my employer not believing I was truly ill. AFter a few months I have noticed that my stomach and reflux are much better and I wish I had tried it a couple of years ago when my GI doc suggested it. At the time it felt like I was just being told it was all in my head, but it seems like it did actually make my brain stop telling my stomach to produce excess acid.

      I've had so many weird chronic health issues my whole life, I am very curious to see what happens now that the endo and fibrosis are removed. I'm hoping my nervous system will stop thinking I need to be on high alert all the time!

      1. they like to use that line, "it's all in your head" or "this is actually normal and just part of being a woman". Been told all of this way too many times. Anyways, just wanted to say I can relate to everything you said about the acid and heart beating faster. Something I definitely deal/dealt with. The acid has gotten better since changing my diet but I still feel my heart feels funky at times. I am so happy to hear you have found something that helps you and that your stomach and reflux are getting a bit better! I hope you continue to see improvement <3 Thank you for sharing. -Kimberli (team member)

    2. Keri left some great thoughts and articles about this. I just wanted to say I am so sorry you are dealing with this. You are absolutely not alone. I definitely have this similar issue as well. Like Keri, I had endoscopy (scope down throat) and they said everything looked fine. Of course. So really, my best bet is it is somehow endo and hormones just acting up. I have found that a change in my diet, has really helped with the acid. Working with a holistic health coach/nutritionist and functional medical doc now and I will say it has been the most productive team yet. Hoping you find some relief too. Please keep us posted on how it is all going. Hugs and good thoughts being sent your way. -Kimberli (team member)

      1. Yeah, changes to diet can definitely help, but having to live on a restricted diet really really sucks. It really triggers me when people tell me that I can fix all my issues but just going on this incredibly restrictive diet that actually has no evidence to support it helps. I know you aren't doing that in this reply. I just want to advocate for everyone that is told that dietary changes could fix their issues. Quality of life is important and being unable to eat foods that bring me joy reduces my quality of life. It also feels like victim blaming and that their pain is due to their inability to control what they eat. Again, I know Kimberli is not doing this. I'm just pointing it out as a general issue. We all deserve to have the underlying condition diagnosed and treated, not told ways to make our lives smaller in order to manage the symptoms. This can take a HUGE amount of self advocacy. I changed my diet and lifestyle all my life and dramatically in the last year in order to prevent pain. I felt fine and had almost no pain as long as ate frequent, small, bland, meals, no caffeine, no decaffinated anything, no chocolate, no sweets, no raw vegetables, no sex, no activity lasting for longer than 30 min, no sitting for longer than 2 hours, no standing for longer than 30 min. Yep, totally managed my pain, but it was not a life I could sustain.

        Keep going to new doctors until you find one who will help you. Find an endometriosis specialist, hopefully one who deals with pelvic pain. Everything changed for me once I found true endometriosis specialists, not fertility doctors who dealt with endo in order to improve fertility.

        My pelvic pain specialist endo surgeon said she sees people with both unexplained stomach inflammation and bladder inflammation that is due to the inflammation process from endo.

        Since my surgery I suddenly have an appetite for food again and am not feeling miserable after even a small meal. Maybe it is the Cymbalta, time will tell, but I feel better than I have in decades and everyone deserves that freedom. @alexalexa don't give up and keep looking until you find someone who cares about your quality of life. It is hard but you deserve it.

        1. Oh yes, I was definitely not suggesting that at all. But the change in diet has definitely gotten rid of my acid reflux. Because I am not eating anything acidic anymore like I used to. I am a spicey lover at heart and realized spices and sauces were really making it act up. But I also absolutely hear you and understand. It is not a cure or way to fix endometriosis for sure. But for some, it truly does bring a bit of relief. I would have to side with you though because, yeah, I am doing a diet that does help, but only a little bit. My daily bloat is still horrible. My bowel movements still aren't normal. And like you said, I have had to restrict SO many of my favorite things. And it isn't even that I can't eat them or miss them that is the biggest frustrating part of it. It's being nervous to eat out/ go to people's houses and standing for hours in the grocery store in tears reading labels because everything I think I can buy- still has an ingredient or two that I can't eat. It's a process. A stressful and exhausting one for sure. It's not an ideal life, that is for sure. But one I am trying to learn to adapt to because at this point, I just have no other choice. And that's what makes me angry. Is that there are not better solutions out there for us. But anyways, so happy you have an appetite for food again and feeling a bit better. Hugs 😀 -Kimberli (team member)

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