u/Fabulous_Community34

Hi everyone - longtime reader, first time poster lol -- I'm 55 years old no in menopause or even perimenopause, have pcos and have been irregular my whole life up until the last 18 months or so when I was every 28 days like clockwork. i always had heavy periods with clots but the last couple years it would pour out like water and I had severe fatigue and dizziness, tachycardia and went on medical leave. Here's my time line - any advice is welcome

I know I've had anemia since at least 2013 (looked back at labs) but probably longer. officially diagnosed in 2018. probablly had 4 rounds of infusions. flash forward to the summer of 2025, im busy working and just being active walking etc but so extremely tired, wrote it off to several things until I remember my iron and had my pcp check and my ferritin was 8.8. went to ED for tachycardia and shortness of breath. Started medical leave on 11/4/25

PCP ordered infusions (I didn't have a hematologist at the time)

Venofer 200 x 5

11/13/25, 11/17/25, 11/21/25, 11/24/25 and 11/25/26

During this time my heartrate was 115 at rest, i was exhausted, short of breath, dizzy, etc. Just when I was hopeing to go back to work (i have a very active job), I was back in the ED.

11/28/25 Emergency Room Phosphorus 1.1 - I had to beg them to check my phosphorus and when it was 1.1 they laughed it off as being "slightly low" and gave me a double phosphate drink and a prescription and sent me home even thought I was still have symptoms (headache, nausea)

12/13/25 return to work

1/22/25 Hemagtology appt. bring a chart I made that shows every time I have a round of infusions they numbers will eventually drop to ferritin 8-10 and I will need infusions again. She promises she will treat me for any ferritin under 75. Orders infusions:

Venofer 3 x300

2/5/26, 2/12/26, 2/19/26

3/11/26 see reg gyno for extremely heavy bleeding. doc says hysterctomy is the only viable option but not sure if anyone at community hospital will do it because I have had so many previous abdominal surgeries but she finds one.

Shortly after meet with gyn surgeon at gyn's office and explain my concerns about adhesions - mention I should go to big city hospital and she says shes comfortable with it, shes only a gyn (not ob), and that hysterectomies are her jam.

april 2026 start norithedrone 5m to stop the bleeding but continue to have very heavy bleeding causing to call out sick from work because extreme fatige and faintess.

may 4, 2026 I get a second opinion at the big city hospitals migs department. surgeon is nonchalant. she says to double norithedrone, take lupron or transemic acid or get a AUE and bide my time til menopause - which the average age is 51 but i'm 55 and still going strong and my two sisters went til 57.

Report back to gyn surg who says absolutely not that i 100% need a hysterectomy because the bleeding will just continue when I stop the oral meds.

6/13/26 go on medical leave even before surgery is scheduled because i just cant even go one more step.

surgery scheduled for 7/30

Ferritin levels drop to 68, ask hematologist for iron insusions, she says no - drop to 56 - she says no - so i say im leaving the practice, she says ok she will do infusions THIS time but she thinks its something else. by the time of my first infusion my ferritin is 40.

Norithidrone finally works and no period in July and no bleeding since

7/14 meet with gyn surg for preop and to sign papers and she says oh wait no i can't do that - you have way too many adhesions, it was would be very hard to even get in there even though I could possible go through URQ - previous note from cholycystectomy/hernia repair says there was scar tissue (not that's belly button area not uterus) and I could get in there (davinci robotic surgery) and not be able to finish and ship you to big city hospital anyway. -- and she says she thinks the cause of all my troubles is adenomyosis - although in the weeks following wont allow a hysterosonogram or MRI

go back to hematologist who says CLEARLY anemia is not the cause of my persistent and overwhelming fatigue and refers me to a sleep neurologist so i can get a chronic fatigue syndrome diagnosis before I return to work on 9/12/26 and go out on permanent disability

phosphorus 1.6 (pcp ordered the test)

My iron level drops from 141 to 72 4 days after the last infusion which I know is too early to test, I tell hematologist im concered my phosphorus is 1.1 and ask for a phosphate prescripion and send pictures of the cellulitis the ED diagnosed at the iv site of my last infusion. she says you cant go by iron because that fluctuates wildly (then why does she use it to tell me im not anemic sometimes), defers to pcp for phosphate prescription and doesn't say anything about cellulitis.

the 1.6 phosphorus was 6 days ago and its a sunday. yesterday and today I feel extremely fatigued. I'm assuming it is now lower (?) I messaged my PCP and asked to repeat the phosphorus level tomorrow and prescribe if necessary

Meanwhile my PCP had to go through hoops to get me in with a new hematologist for proper evaluation for a bleeding disorder like von windlerbrands which my hematoolligst refuses to do -- but will do a bone biopsy if that would make me happy even though she says theres nothing in my bloodwork to indicate anything. my appt with new hematologist is in nov

PCP also ordered a pelvic MRI because previous 3 or 4 gynecologists refusted and the plan was to then switch me to an endo/adenomyosis specialist as my new gyn but

My MRI was normal which is probably partially because the bleeding stopped because prior to norithidrone it was enlarged with a thickened lining - but no signs of adomyosis or endometriosis and my organs are not adhered to each other as was told by gyn - she said there was a high chance of nicking bladder or bowels.

So my questions are

(1) what phoshorus level needs a prescription?

(2) did you iron/feretin etc levels even out after bleeding stopped and you felt better? i thought i was feeling better but now worse so just wondering if i am feeling worse from phosphatemia --- or if i don't feel better now with the bleeding stopped, what is the cause of my extreme fatigue -- anemia and fatigue have been the constants in my life, -- have had 3 sleep studies - cpap was optional, tried it - didn't help, tried an oral device - also didn't help.

So tomorrow i will have blood draw for phosphorus with pcp and see what happens

If you made it this far - thank you so much! any advice is most appreciated!!