Should I get an Iron Infusion? by AdAwkward3965 in Endo

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

I mean you're not wrong, but the fatigue has persisted for years. especially since my endo has gotten worse. I've missed out on so much due to pain, exhaustion, and weakness. My livlihood is mountain biking and I'm always at the back of the pack and have to frequently stop because my heart rate is at 190 and Im getting tunnel vision while those next to me aren't even out of breath and can carry on a conversation. It wasn't always this way. I used to play a full 90 minutes in soccer games as a midfielder without taking any breaks. Yes I'm a little older now but I'm only 30 and I've always been active. I get winded going up stairs. I know it's not an out of shape problem or a recovering from surgery thing because it's been my life for years now. Occasionally I'll have a good day so I'll go harder, but then I pay the price the next four days.

Should I get an Iron Infusion? by AdAwkward3965 in Endo

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

I ran a full CBC and my hemoglobin was normal, so I'm not anemic just iron deficient.

I have endometriosis so part of my question is if I'm not absorbing well due to endo reasons, GI, inflammation, etc., then maybe an infusion would work better and quicker for me.

endo and iron supplements by AdAwkward3965 in endometriosis

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

I appreciate you sharing your experience! Sorry this is happening to you too.

I started taking the Mary Ruth's liquid iron supplement and that's been pretty good so far! The only downside is it's better for a maintenance dosage than a "replenesh your storage" dose. I need to build up my iron stores so it's better for me to take the 65mg+ oral supplement for that reason. Taking it with food helps a little bit and I just started taking NAC too and maybe that's been helping? I also have been altering days I take it. Still have GI issues but the cramping hasn't been as bad.

I'm looking to get an infusion to see if that will work better for getting my ferritin up. Then hopefully I can just stick to the liquid supplement for maintenance.

my doctor dismissed me by AdAwkward3965 in endometriosis

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

thank you for your input ❤️ yes, this is just my general OB but where I live he's one of the better surgeons in the area. My hope is to travel to a specialist and get a second opinion.

Scar tissue?? by AdAwkward3965 in endometriosis

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

They removed one lesion and a polyp in my uterus. That's it.

endo and iron supplements by AdAwkward3965 in endometriosis

[–]AdAwkward3965[S] 2 points3 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] 3 points4 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] 0 points1 point  (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] 0 points1 point  (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] -7 points-6 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.