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Anyone With Endometriosis?

livelifelarge24

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livelifelarge24 Enthusiast
livelifelarge24
Posted

I am looking for any celiacs out there that might have endometriosis also that I can chat with. Going gluten free completely changed my world for the better for a few months. Well obviously forever, but what I'm trying to say is that my endo symptoms and issues have gotten so much worse since. I am struggling a lot with it and would love to find someone to chat with and ask a few questions!

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Adalaide Mentor
Adalaide
Posted

It's only been 5 months gluten free for me so I doubt I have any useful insight. I was diagnosed with endometriosis 13 years ago although I'm certain that it had a serious impact on me since my early teens. Since going gluten free in January I haven't had any relief of my symptoms associated with my period. As a matter of fact I'd say it's worse, even if only because I have gone from as regular as clockwork to having my period every 2 1/2 to 5 weeks. (Usually right around 3 weeks though.)

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AmyWrites Newbie
AmyWrites
Posted

Only thing that helped my endo was getting that surgery (laparoscopy I think it's called? Sorry, english isn't my native language) and cutting away sugars and caffeine.

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GFreeMO Proficient
GFreeMO
Posted

I've had endometriosis since I was 19. I am in my late 30's now. Going gluten free did help me too for a long time but now there is no difference. It's hard because glutening pains sometimes feel like endo pains. I also think that when glutened, it can make all of the endo scar tissues inflammed and thats why we don't feel better. We feel both glutening and inflammation from the endo.

I think celiac is one of endos sister diseases. Endo being an autoimmune disease and celiac being one too.

Read this article.

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Adalaide Mentor
Adalaide
Posted

I suppose I should have shared what works for me to help me get through the first day or two. (Which is particularly on my mind this morning since I got to wake up in the wee hours of the morning feeling sort of like a gutted fish.) While I've cut back on my dairy intake significantly, I've found that milk helps a lot. I probably drink about a gallon over the course of the first two days of my period, always chocolate but that's just personal preference. I also read long ago that cinnamon is some sort of natural remedy that will help, something to do with reducing bleeding. I have yet to successfully adapt my snickerdoodle recipe, so instead I'll have things like french toast or hot chocolate with cinnamon. Cinnamon pills I'm sure can be perfectly useful but I much prefer foods in their natural forms. Last thing I do, is for two days I get license to eat whatever I want. (Gluten free of course.) So if I decide that I absolutely can not live another moment without an entire pint of Ben & Jerry's, I have it. I'm sure my waist would have something to say about this but sometimes a girl just needs ice cream.

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GFreeMO Proficient
GFreeMO
Posted

I suppose I should have shared what works for me to help me get through the first day or two. (Which is particularly on my mind this morning since I got to wake up in the wee hours of the morning feeling sort of like a gutted fish.) While I've cut back on my dairy intake significantly, I've found that milk helps a lot. I probably drink about a gallon over the course of the first two days of my period, always chocolate but that's just personal preference. I also read long ago that cinnamon is some sort of natural remedy that will help, something to do with reducing bleeding. I have yet to successfully adapt my snickerdoodle recipe, so instead I'll have things like french toast or hot chocolate with cinnamon. Cinnamon pills I'm sure can be perfectly useful but I much prefer foods in their natural forms. Last thing I do, is for two days I get license to eat whatever I want. (Gluten free of course.) So if I decide that I absolutely can not live another moment without an entire pint of Ben & Jerry's, I have it. I'm sure my waist would have something to say about this but sometimes a girl just needs ice cream.

I'm glad that you found something to help!! I have a casein allergy so that wont work for me. I usually drink hot lemon water with sugar and that seems to help me some. Also a hot bath and just relaxing with the heating pad.

I like your comparison to a gutted fish! Thats exactly how gluten makes me feel.

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Michelle1234 Contributor
Michelle1234
Posted

When I was younger I had endometriosis really bad. Drs were no help. As I got older I had really heavy, long (7 days) periods but was able to manage the pain better with Boiron Cyclease. After I got ovarian cysts I started taking DIM Plus and all of a sudden had regular 4 day periods that weren't very heavy. Your mileage may vary but I thought I'd throw it out there.

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livelifelarge24 Enthusiast
livelifelarge24
  • Author
Posted

I have said that gluten pains and endo pains can feel so similar! I had to make myself a check list for when I'm not feeling well that helps me differentiate which I'm going through. I wish there was some better hope for us. I can handle celiac - I face that crap with my fighting gloves on. Eat right, take care, I'm fine. But the endo... different story. I feel so hopeless like there's nothing I can do :/

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  • 3 months later...
joolsjewels Newbie
joolsjewels
Posted

What are your endo questions? I have gluten intolerance, endo, and polycystic ovary syndrome. A gluten contamination reaction comes quickly after the offending food is eaten. The symptoms are stabbing pain in the stomach, stomach cramps, diarreah, nausea, body aches similar to the flu. Whereas endo symptoms are more lower back pain, (sorry for the next few) deep pain during sex and sometimes after, diarreha (sometimes bloody) during your period, heavy and prolonged periods. For myself without meds, i will go for a month and a half at a time to the point that i can barely get out of bed. I think the blood clots are the worst. I know that sounds blunt, but you did say you have questions. Lysteda is a great med that is taken the first 5 days to help break up the clots. In turn, it eases the cramping. If you have any questions, feel free to ask. You can even message me about specific info.

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pricklypear1971 Community Regular
pricklypear1971
Posted

Well, I probably have it. I was set for a lap and then found out I was pregnant (after a year of trying). I am very, very fortunate that pregnancy "fixed" most of my symptoms - constant pain. I still have very heavy periods, clotting, and sometimes horrendous pain during my period.

What helps me is exercise. A 3-4x a week routine of working out helps the pms (including back cramps) go away.

Also, I have found that my estrogen and progesterone levels are sub-optimal. I have used progesterone cream off/on for years and that helps my pms symptoms/cramping. It also, sometimes, makes my periods lighter.

My nd put me in a combo estrogen/progesterone cream a while back and the cramps started coming back (daily, not pms or during my period) so I stopped it and switched back to my natural progesterone cream. It suppressed the cramps within a month. So, progesterone can help. Just don't add estrogen. I think dr. Lee's theory was that if you level out progesterone, estrogen will level itself but I don't have the book in front of me and haven't had coffee :).

When things get bad I pop ibuprofin (now I use Tylenol) and go to sleep. That was my cure when I was a teenager. I have gotten good at learning how to "knock out" for a quick nap to alleviate pain. Helps me with a glutening, too. Sometimes I don't have the option and so I try to move around or stretch (for endo). For glutening I just try not to embarrass myself. Sigh.

I also think starting thyroid meds helped lighten my periods and reduce pms. So, thyroid may be a contributing factor.

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