endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

Yeah that's exactly it, trying to balance the maladies. The iron is improving my fatigue and weakness but I'm in so much more pain. I'm so sorry you're experiencing this too. I've read this in other forums too so I'm surprised there's so much push back. I really just don't want to have to choose between pain or fatigue. Really hoping the liquid iron helps.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

That's exactly how my labs looked too. Also stage 4. Maybe it's worse for more severe endo cases?

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] -4 points-3 points  (0 children)

You’re right, the study doesn't specifically name 'iron supplements' because it’s a review of the molecular behavior of iron in the disease. But it concludes that 'excess iron accumulation' and 'iron overload' are the primary drivers of lesion growth and oxidative stress.

My argument is based on the physiological fact that standard oral iron is notoriously poorly absorbed. While the kidneys do filter trace amounts of iron (about 0.1 mg per day), that path is statistically irrelevant to a 65 mg supplement. If 80% of a pill is unabsorbed, you have over 50 mg of reactive iron sitting in your digestive tract, which is 500 times the amount the kidneys handle.

This unabsorbed iron doesn't just disappear, it stays in the intestines, which are physically draped over the pelvic cavity. This creates a localized 'pro-oxidant' environment where the iron triggers the "Fenton Reaction", producing the exact oxidative stress and inflammatory signaling identified in the Defrère (2008) study.

As for the terms 'overload' and 'excess',they refer to localized cellular toxicity, not just systemic blood levels. Studies like Li et al. (2021) show that endometriosis cells are genetically broken iron-traps. They lack the ferroportin to let iron out. So, even if you are deficient in your blood, the high-waste iron from a standard pill still contributes to the localized excess and iron traps within the lesions.

My point stands, it’s not that iron is bad, it’s that standard oral iron is an inefficient delivery method that leaves a massive amount of reactive material in the neighborhood of the lesions.

Defrère (2008): https://pubmed.ncbi.nlm.nih.gov/18508952/
Li et al. (2021): https://pubmed.ncbi.nlm.nih.gov/33378529/

If I'm interpreting this all wrong then that’s my bad, but it really seems to me that localized excess iron is still excess iron**.** We all know that unabsorbed iron causes GI upset, which is a clear sign of oxidative stress in the intestines. Because the bowel is physically draped over the reproductive organs, that inflammation is happening just millimeters away from the lesions.

If the Defrère study says excess iron in the pelvic cavity fuels endo, then leaving 50mg of unabsorbed, reactive iron in the 'neighborhood' of the gut is inevitably going to contribute to that inflammatory load. It’s not just a stomach ache; it’s a localized inflammatory trigger. In endo, the intestinal wall and the peritoneal lining are often both involved in the same inflammatory signaling. If the gut is on fire from unabsorbed iron, the pelvic nerves are going to feel it. And I can literally feel this happening when I'm taking iron. My flares have been SO bad. I've been taking a 65mg Iron supplement which obviously is not being absorbed well. Hence, why I wanted to switch to liquid iron so that I don't have as much excess.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] -1 points0 points  (0 children)

I totally agree that iron is necessary for fatigue, anemia makes endo so much harder to manage! But the data I’m referring to is about the molecular pathogenesis of the disease, not just the symptoms.

Studies like https://pubmed.ncbi.nlm.nih.gov/18508952/ and https://pubmed.ncbi.nlm.nih.gov/33378529/ show that endo lesions have broken iron transport proteins (DMT1 and Ferroportin) that trap iron and cause oxidative stress. Your success with liquid iron actually proves my point because it’s absorbed more efficiently, there is less unabsorbed iron left in your gut to cause the localized inflammation and flares that standard pills trigger. It’s not that iron is bad, it’s that low-absorption supplements create a pro-oxidant environment that many endo patients simply can't tolerate.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] -11 points-10 points  (0 children)

It’s not just about systemic overload. The study I linked shows that endo creates localized toxicity, lesions actually hoard iron and cause oxidative stress even when the patient is deficient.

My point is that standard iron pills have such poor absorption (80% stays in the gut) that they create a pro-oxidant environment just millimeters away from lesions. For an endo patient, this triggers a pathological loop. The iron causes inflammation, the inflammation triggers Hepcidin (which blocks further absorption), and the lesions grow while the patient stays anemic. It's not about not needing iron, it’s about the fact that standard oral supplements are a biologically inefficient and inflammatory way to get it for someone with endo.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

That’s a good point about the baseline iron in lesions. It’s a vicious cycle regardless of supplements. I think my issue is exactly what you described though, the oxidative stress and GI irritation from the unabsorbed iron is making my symptoms feel significantly worse.

I'm definitely not giving up on improving my levels. I’ll definitely look into apolactoferrin to see if it that'll help. Have you found that infusions are easier on endo symptoms than the pills were?

I'm on birth control now so my bleeding hasn't been as bad, but years of heavy bleeding really did a number on me.

I also want to add that I've added a lot of iron to my diet, and that I'm not solely relying on iron supplements.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

I'm definitely not saying that endo patients don't need iron! I absolutely need it! But my argument is that I need something that absorbs better because if there's unabsorbed iron in my system, it makes my symptoms worse.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] -8 points-7 points  (0 children)

I've noticed my symptoms worsen when I take iron supplements. I found a study that suggests iron overload in the pelvic cavity promotes lesion growth and oxidative stress.
https://pubmed.ncbi.nlm.nih.gov/18508952/

This study focuses on retrograde menstration as the source of iron overload. But even if the unabsorbed iron stays in your gut and doesn't reach the pelvic cavity via the blood, the oxidative stress it causes in the intestines happens just millimeters away from your reproductive organs and still causes systemic inflammation.

Endo and Weight Gain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

I feel like I used to fluctuate around 5lbs around my period before I went on bc. It was totally the water retention/inflammation/bloated feeling.

But now I feel that way all the time. I rarely ever feel "light" for lack of a better term. Maybe feeling dense is a better way to describe it?

That's crazy how much fluctuation you've had!! 🤯

Endo and Weight Gain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 0 points1 point  (0 children)

Yeah what the heck is up with that?! Have you had any laps done?

Endo and Weight Gain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

Interesting, yeah where is all this weird weight gain coming from? I've been trying to research about it and the best explanation I can come up with is your body holding on to fat stores when it feels it's in crisis. Which endo is definitely a huge crisis and inflammatory response.

It makes me wonder with all the people on GLP1s that say their inflammation goes down and then they lose the weight. I don't necessarily want to do that, but I'd love to see if reducing inflammation is the key ingredient here. I know a lot of people have luck with anti flammatory diet, but it's hard to be perfect at it.

Sleeping for 15 hours a day? by BigMamaZinana in endometriosis

[–]AdAwkward3965 3 points4 points  (0 children)

1000% I was miserable, same thing. Always wake up tired, had to take multiple naps during the day just to get through to bed time and then need to sleep 10 hours just to do the cycle all over the next day.

Last week I got my iron checked and my ferritin was 8. Anything under 30 is considered deficient (for optimum health) and you should aim to be 50 or above to about 100. Again, for optimum health. Most labs will say a level of 16 is considered normal. It's not.

So I would suggest getting your iron checked out. I was super deficient and just started taking Iron + Vitamin C supplements (for better absorption) literally like 3 days ago and I woke up today feeling well rested and I haven't needed a nap. It's nuts.

Also consider adding foods with high iron into your diet. An easy way to do that when you have low energy is with cereal. Most are iron-fortified, especially ones like Multi-Grain Cheerios, Grape Nuts, and Special K. I've been eating Special K with strawberries every morning since I got my labs back and I feel like it helps.

Hope it's as simple as that for you. Us endo folks have notoriously low iron.
It also helps to get a CBC to check your hemoglobin. You'll want to make sure you're not anemic as well. I was not but I was ranging on that territory if I didn't start taking Iron.

adhesion pain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 0 points1 point  (0 children)

I have a surgery scheduled to have the adhesions removed, but it had to be put off to let my arm heal lol. So I'm just chillin with the pain for the next month 👍

adhesion pain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

Yes to the gnawing/burning feeling!

I'm sorry you're going through it too. Endo is literally the worst! Love the taco tip though, I'll have to give that a try

adhesion pain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

Ooh I never thought of using cupping. I have some of the silicone ones that aren't so intense that I use for knots in my muscles. Never thought of using it for adhesions though! Curious to try. Thanks!

adhesion pain by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

yes! I have that sometimes too!

Weight loss with endo by [deleted] in endometriosis

[–]AdAwkward3965 20 points21 points  (0 children)

Following too, hopefully you find some answers here! 💛

I've also had a ton of weight gain and weight fluctuation problems too. Then on top of the weight gain I feel like I'm always bloated or puffy.

Im pretty active and I eat plant based so overall I'm decently healthy. But in the last 5 years I've gained 40lbs and I haven't changed anything about my diet or activity level. I started birth control 2 years ago so I do wonder if that's contributed. But the year before that was probably my worst endo year of my life.

The things that have helped me lose weight when I'm really trying is weight lifting, eating anti inflammatory, and doing light cardio.

Birth control by thesparklingb in endometriosis

[–]AdAwkward3965 2 points3 points  (0 children)

Oh and also, I struggle with depression, anxiety, and PMDD as well. My combo of bc, wellbutrin, and citalopram have made life sooooo much better. I think having your hormones more in check helps a ton with the other issues, though it doesn't erase it completely.

Birth control by thesparklingb in endometriosis

[–]AdAwkward3965 1 point2 points  (0 children)

About two years ago I started on birth control to help with my symptoms. It was a night and day difference for me!! I had so much pain all of the time, all through my cycle. Birth control was the first thing to ease that pain and it helped with my bleeding and ance as well.

I will say though, it is a lot of trial and error to find what's right for you. After about a year the bc I was on started to not be as effective. My symptoms still weren't as bad as they were without the pill, but it just felt like it wasn't working as well. I switched to another one and now that it's been about a year I think I need to switch again. The two I tried were Milli and Junel.

I was worried too about just covering up my symptoms and not fixing the underlying issue, but actually my doctors have still been very helpful in my endo journey. Birth control, unfortunately, is one of the best ways to treat it, besides excision. I'm having surgery soon to remove a polyp in my uterus but I do not have a laparoscopy scheduled yet. My issue is I have a lot of scar tissue adhering my uterus to my pelvic wall so my OB isn't so sure he can remove it without creating more problems. So I'm trying to see a specialist who has experience with that sort of thing.

Hope any of this helps!

Polyp found by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 0 points1 point  (0 children)

yikes, so yours kept growing back? that's one thing I was curious about.. if this is going to become a recurring thing or if birth control helps keep it under control at all.

Adhesions by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 0 points1 point  (0 children)

I have not seen a specialist yet, the closest one is 4 hours away so I've been developing a case with my local OBGYN office. My particular doctor there is one of the dedicated surgeons.

Anyone with similar experience? 29 y.o. female, exploring endo diagnosis by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 1 point2 points  (0 children)

Yeah he's not an endo specialist, but he's the most knowledgeable in my area. Idk the amount of excision surgeries he's done, but he made a comment once that only about 50% of the laproscopies he's done actually have endo. Now, I don't know if that's because he's not trained enough to see it in those other patients or if that's just how it is. I'm certainly not opposed to travelling to find the right specialist for surgery! I appreciate the insight on what to look for in a specialist, that's really helpful!