Endometriosis
Hy.someone from endometriosis problem with reflux and spasm esophagus?? Have got this problem nothing helps .thanks
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 — 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 — 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 (endometriosis.net team member)
https://endometriosis.net/clinical/gerd
https://endometriosis.net/living/symptoms-unusualI 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!
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)
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) 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.I used a website called geneticlifehacks.com to read the raw DNA from 23 and me. It does all of the work of interpretting the rs IDs and genes and grouping them together in meaningful ways. I honestly don't even remember how I found it, if it was suggested by 23andMe or if I googled it. I did an annual subscription but you can cancel at any time and they charge $7 a month until you cancel. I started trying to read it all myself but honestly it is impossible. Everyone who does this uses software to read the raw data.
Getting pelvic floor botox has really helped my PT and I start pulling apart the different drivers of my pelvic floor issues. I also had a pudendal nerve block during the procedure and that just shut off all of my pain entirely, it was a dream! That told my pt a lot. I also have bladder muscle relaxers and general muscle relaxers and that helped me puzzle things out too. My bladder was going nuts so I took the bladder spasm medicine and it made zero difference. So an hour later I took the regular muscle relaxer and my bladder symptoms were gone in 15 min. That told us that my bladder is not causing the pain, the other muscles in my pelvic floor are going off and probably irritating nerves that are irritating my bladder. That gave me so much hope that I could drink caffeine again someday!!
Honestly, 6 weeks out from the Botox, I am feeling a lot better and like I have a better understanding of how to manage symptoms and less afraid to challenge things and see what happens. Having some muscle relaxers to shut down flares really takes the anxiety down, because if I do try something I know I won't have to live with the consequences for hours or days. It is really really helpful.
Good luck to you and thanks for the encouragement. It really is a giant puzzle and the hardest part if finding providers who are willing to start turning over every piece, looking for the corners and edges, and matching up the patterns.
I am DYING to get my hands on 23andMe's data and do a correlation between people who have the endo gene and those who have genes that indicate histamine issues and see if there is an overlap between prevalence of having both genes, and/or, if you have the endo gene AND histamine issues are you more likely to have symptoms and diagnosis. Since histamines are a driver of inflammation, if you have high systemic values and a genetic pre-disposition to endo, then maybe that combo could explain who ends up with it and who doesn't, and who has terrible pain and who has none.
I have no idea how to get permission to do a study like that or how to get paid for it, I need to figure that out!this is SO helpful. I will have to check out that website. If it helps give a better understanding, that $7 is worth it! That is interesting about the pelvic botox/bladder pain. My surgery last month, was to remove a hernia and also possibly repair mesh on the other side from a previous hernia removal- it was causing so much pain. He ended up injected that area with a steriod to help with the inflammtion from the mesh that was used and omg, that helped SO much with the pain. I wish he could just inject my entire body with it. I wonder if it had a similar effect as what you are talking about.
Honestly, reading all of your words are so encouraging. You are such a warrior and I truly am proud of you for fighting to get your health back. It sounds like you are doing an amazing job doing just that. No matter how hard it is. Having those few tools that help you manage pain and discomfort, are a game changer for sure.
That would be an amazing study and it sounds like you would be the perfect person to do just that! I would try reaching out to all the endometriosis accounts that you can who raise awareness/fund research. You never know you may get the right person who will know exactly where to send you to do just that!
<3
Kimberli (advocate)
