I'm Lizzie and I was diagnosed today at nearly 39 years of age. Endometriosis in my abdomen and ovary. My ferritin levels have been very low for two years and I have missed periods on and off the longest being for 5 months. Apparently, my ostrogen levels are normal/low so I really didn't think my diagnosis would be endometriosis.
The symptoms I experience from low ferritin have been horrific and still persists even with iron tablets. I'm unsure whether that is to do with the mass in my abdomen. Is it common to grow in the abdominal wall, deplete ferritin and stop periods?
My partner and I are planning to try for a child at some point over the next few years and the specialist told me that my age plays more of an impact on my fertility rather than anything else. Apparently my hormone levels are within range so what is dropping ferritin levels is it endo?
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Lizziepats85
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Hello, I’ve recently been diagnosed with endo after eight years fighting to be heard.
Over the past four years my iron levels have dropped very low which has left me on prescribed iron. I believe it’s because endometriosis cells act just like those in the uterus, which bleed during your period (causing adhesions) the additional bleeding will contribute to additional blood loss which depletes your iron.
Thank you for your reply. That's very interesting. Yes I was prescribed them two years ago with no explanation or investigation just to take them. I asked whether it is linked to endo and was told it was possible. Do you miss periods too? I have read somewhere that your body doesn't want to lose blood so will hold onto what it has rather than have a period.
I am 51 and bleed constantly so I don't think the theory about holding on to blood is true although I do think the body tries to help as much as it can. What stage of endo are you? From what I've read it's not the level of estrogen it's the balance between estrogen and progesterone that suggests you are estrogen dominant. So you can have very low estrogen but still be estrogen dominant. Estrogen is also in your tissues, and as you say endometriosis actually makes it's own estrogen without needing the ovaries. The dropping of iron is usually from blood loss but if you log on to your NHS record and go to bloods you can see the complete break down. What I would say is that peri menopause tends to make everything flare. My peri symptoms started at 41 and were really tough: they are still going on now 10 years later. I'm on zoladex now to stop the bleeding. There are a lot of women on here in their late 40s and 50s suffering because of the need for HRT for mental health but the physical symptoms are making us ill. There are many links to endometriosis and fertility which I'd explore. Many women have been lucky enough to conceive but others haven't so I wish you lots of luck there. Endo grows in lots of places unfortunately- it's insidious and persistent but lots of us use a low inflammatory diet and exercise to combat it. Good luck with your journey x
Very informative thank you. I havent read enough about that balance. Constantly bleeding must be ridiculously draining I have thought about perimenopause a lot especially as my mother went through the menopause at 43. Plus I have lots of symptoms. I also stopped all alcohol over a year ago, don't eat processed foods/drinks and regularly exercise.
I wasn't told a stage and was told not to do anything about it If trying for a baby. Since I remember I've always had long and heavy periods and some pain but just thought it was normal.
I don’t have any insight into why your ferritin is dropping but I have some advice on how to improve it which is hopefully helpful. Your doctor can prescribe ferritin infusions which deliver a large amount directly into the blood. I’m surprised they haven’t done this when the supplements aren’t helping. It’s hard for the body to absorb iron from supplements once they reach the gut. The other way of taking iron is via an oral spray in the mouth which gets absorbed by under the tongue and gets straight into the blood stream. You can get this in Boots. It’s expensive, worth asking if there’s a prescription version.
Taking iron with vitamin C will increase its absorption, avoid tea/coffee with food as it will block iron from being absorbed. If you are taking omeprazole or anything that reduces acid in your gut you might become anaemic as the gut needs acid to release iron from food. Drinking orange juice or eating tomatoes with iron rich foods like steak will help. Plant based iron doesn’t get absorbed by the body in the same way as animal based iron. Organ meats like liver are very rich in iron so consider trying these if you can.
If you’re getting short of breath from iron deficiency I would push for a ferritin infusion as having low iron and low haemaglobin over a long period of time can put your body under a lot of stress and not to scare you but it’s not good for your heart.
My husbands got super low iron due to a heart condition and I’ve got haemachromatosis so we’ve had some experience with trying to boost and lower iron! Best of luck, I hope the symptoms reduce and you get some answers on whether it’s endo related.
I have asked for iron transfusions over and over but they refuse and just hand out tablets. They gave me one iron transfusion before I had an operation but they never provide then regularly. Your consultant or hospital must be good 👍 most GPs refuse.
My husband has had three infusions until his iron finally stabilised, his GP was really on it but I presume the threshold must be lower for someone with a heart condition. The infusions are probably quite expensive as well and there might be risks of adverse effects so maybe that’s why they are refusing! I did read on the NICE website some general guidelines that recommended ferritin infusions among a load of other investigations if oral supplements don’t work so maybe going armed with those to your healthcare provider might get them to try more avenues than just prescribing tablets.
Friend has normal but at low end of range of B12 but low ferritin levels with Endo. Her young daughter also has low , below norm , B12 levels. Neither tested for gluten but both far better on a predominantly gluten free diet and liquid methylated B12 daily. Pain levels go down & ferritin goes up when she does this. As gluten can be an issue for those with inflammation issues such as auto immune and Endo worth exploring . B12 is water soluble so as such doesn’t build up in the body to cause harm . If you take B12 then you should long term also insure your diet is B but rich or take an additional supplement to keep all in relative balance for the sake of general welfare.
I was diagnosed with endometriosis during my hysterectomy at 48 years old and from my histology afterwards. Thank God my endometriosis is gone after 3 hour long robotic hysterectomy due to extensive and complete endo removal. I feel great now and am very grateful.
My ferritin levels were too low for years 15 + years. Just a thought. If you are taking PPI medication longer than 6 months , these medication lower your Iron saturation in your body and it doesn't matter how much Iron you will supplement, you will no absorb enough.
Doctors ususally never tell you this. They often prescribe PPIs and patients just end up very anaemic. I understand that your aneamia is due to heavy periods with clots- same as my was, but please be careful of PPis - educated yourself on it , the doctors often prescribe these meds for us to protect our stomach lining from prolong overuse of Iron tablets. There are also other alternatives worth researching if it applies to you. At the same time they are important,but need to be taken when and how prescribed while advocating for yourself. I took them for 6 months ,they really helped me to heal my stomach erosions from prolonged Iron tablet use , now I weaned them off on my GPs approval and feel great . My saturation of iron is correcting. My anemia and iron levels are completely normal first time in 15 years thanks to my hysterectomy. The best thing I ever did. That surgery saved my life and I was the one who was fightig it, as I wanted so desperately to still have a child I don't have. Now I feel it is the best thing and gift I ever recieved.
But then again, you might not be even taking those meds. So perhaps my advice is not applicable. Good luck with everything, and don't worry, you can get rid of your endo if it is closer to your menopause , perimenopause for good. Every case is individual, as we all are.
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I have thought about perimenopause a lot especially as my mother went through the menopause at 43. Plus I have lots of symptoms. I also stopped all alcohol over a year ago, don't eat processed foods/drinks and regularly exercise. 
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