I've been on Norethisterone for 18months for severe floo...

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I've been on Norethisterone for 18months for severe flooding which caused anaemia and hospitalisation. In july I went into hospotal for an ablation but woke up to be told the procedure could not be done as my uterus was too big. Told to take the tablets continuously and consider a special coil. At 52 I really don't want to have a coil fitted so i've been taking the tablets but have cut down to 1 a day but am now bleeding. GP is no help and I was unaware of the carciogenic problem. Where now? I don't know - hence my visit here looking for an answer.sad

[i:a1f46870d3]This message was automatically imported from the original Patient Experience[/i:a1f46870d3]

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8 Replies

  • Posted

    Dear A,

    I really feel for you. It is so hard when the doctors are of no help. I think you should try to get a hysterectomy, at 52 you no longer need your womb. I feel it is terrible we are all put on these life altering hormones just to shut us up.

    You need to be pushy with doctors. Don't just take what they are saying as set in stone. Ask to see another gynaecologist or see one privately.

    I wish you all the best.

    x a

  • Posted

    HI,

    I have fibroid tumors and have been on Norethidrone now for 2 yrs.

    I do have weight gain, but my bleeding has stopped. I am down to 1 pill

    5 mg. a day. I added acupunture, reiki, herbals, homopathy, kinesiology all to my attempt to shrink my fibroid. IT WORKED. The fibroid is smaller and I am thinking of taking the pill every other day to see what happens. I would try holistic approches along with your RX. I hope this information helps you.

  • Posted

    I have a very disturb history. Infact i got 11 miscarriages, during these miscarriages the dr detected that i have anti cardiolipin harmone range less than 15, they gave me prdnisolone(steroids) which made my periods really abnormal. After some time they said i have a fibroid in the prosterior wall of the uterus, also i have poly cystic ovaries, beside i got a problem of hypotheyroidism. I m 33 yrs old and still wish if i could get a baby. I read ur review that these homeopathic herbs helped yu, if so can yu plz give me the name of that medicine. I normally have very heavy periods with thin watery blood which stops with norethisterone 6 tablets a day. once it stops then i minimize my dose to 3 tabs per day. after eating 30 or 60 tablets the next few periods are normal. Please guide me what to do?
  • Posted

    I was recently prescribed Norethisterone for heavy bleeding and while it worked for 4 days the bleeding came back, worse than ever. My Dr prescribed Tranexamic Acid which is brilliant. The only dowside was I got a lot of cramps with it - but the bleeding stopped and I have been bleed free for a week now. I found the Norethisterone made me very moody and put me in a negative mind-set, but the TA seemed to work for me (it is non-hormonal). The only down side is I am currently very anaemic through blood loss so I am weak and tired from the affects of that...the things we have to go through! Losing weight for me also seems to help - I have lost 14lbs and feel better in myself.
    • Posted

      Hi Magoo,

      I was perscribe TA as well worked on the second attempt but seemed to lose effectiveness after the second cycle.  Can you please share if you experienced similarities and if the TA is continuing to work for you?

  • Posted

    Magoo - have you been checked for Anaemia recently and do you have shortness of breath - if you've not been checked or struggle to breathe then please, please get a blood count test done.

    You sound identical to how I was - I began bleeding in June and just didn't stop and began losing bloodclots as big as my palm and I became very lethargic and began to struggle to breathe but didn't even consider I was in danger because I was seeing my doctor weekly.

    I then asked for an Ovarian Cancer test to put my mind at rest and the vigilant nurse asked if she could also take an extra blood sample to test for Anaemia - that night an emergency doctor phoned me and ordered me into hospital as I had less that 2 units of blood in my body and was in a life-threatening and ciritcal condition and hadn't even realised (because when you have a gradual illness, you don't realise just how ill you are) and I needed an immediate life-saving full blood transfusion - he was amazed that I could still stand let alone move around and speak.

    In less than 12 hours, I then had a heart attack as my organs began to fail due to the Anaemia and I almost died again later that day - luckily by then I was in hospital (if I hadn't have been, there would have been no way I would have survived).

    I hate hospitals and I was hospitalised against my will but I was only in hospital for 48 hours and that's from being at death's door and needing two bouts of resuscitation to being declared well enough to go home "under caution" - ie, so I went home and regained my strength in bed and with a few more weeks off work.

    The blood transfusion didn't hurt at all and saved my life and last Monday I finally returned to work after 12 long weeks off because I was too weak and tired to work or do much else and now I'm the picture of health again - although I did miss 5 pills of Noresthisterone on Dec 02/03 because I went up to Edinburgh and stupidly left my pills behind and this Monday (10th) I began to bleed despite taking my Norethsiterone and Ferrous Sulphate religiously and I'm still bleeding now - but whereas before I was flooding through max absorbancy towels AND tampons within half an hour, the bleeding is light and watery and I can sleep using just one sanitary pad alone per night.

    I am admittedly worried but I think the break in medication made my body think it had to have a period/breakthrough bleed - although I don't get why the Norethisterone hasn't stopped it yet seeing as it stopped my bleeding in hospital (when I was flooding and losing enormous bloodclots) within 3 days - I've now had this watery bright red bleed for 5 days - if anyone can advise me on that or reassure me I'd be grateful xxx

  • Posted

    Wow ... amazing story ... am grateful for your explanation of what can happen. Thank you for relating that. Seems it was right for me to finally go to the doctor? Like you I hate hospitals and all that . Every time for 40 years I am anaemic whenever I have a blood test ... have just accepted that as part of how I am made. My doc is great. She gave me strong iron tablets yesterday and I already feel much more lively! Maybe placebo, but I slept like a log last night for the first time in years and actually feel like I am a human again. I have been given norethisterone (bleeding heavily for 40 odd days) and am booked in for scans and blood tests ... I just thought it was menopause so tried to ignore it until I could barely stand from the blood loss. Am still not perfect, know I have to have tests, know they suspect fibroids, but am feeling much better already. The bleeding has stopped already too! Thank God for that! Yours is much much worse than mine ... guess I am lucky?
    • Posted

      None of us are lucky,  this is a debilitating condition and I'm furious that the medical industry's answer is Histerectomy or live with it and the anemia.  I wish we are treated with more respect and not pushed around like we are a non entity.  I hope someone out there has found a caring physician and clinical trials for better treatment and if so please share it.

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