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Super heavy uncontrolled bleeding, waiting for referral SCARED

Posted , 5 users are following.

jo4848
jo4848

Hi ladies,

I have posted on here before but now I am really scared. I am 45 and my issues started last year with spotting after exercise. An US revealed a small fibroid and possibly a polyp but the 2 hysteroscopies I had failed to successfully remove it due to where it was in my tilted uterus. My periods had also started to get heavier although painless. Two biopsies came back clear so the specialist suggested it was hormonal and I was put on the progesterone only pill (Cerazette). I had my first really scary bleeding episode in Feb, just before starting the pill. It was the last day of my period which was nearly stopping and then I started flooding and couldn't leave the toilets in McDonalds for ages. We were out shopping in a different town and I felt awful, thought I'd have to go to A&E but eventually stopped it after taking ibuprofen which seems to work for me. 

Soon after this I started taking this pill which made my periods longer and I was also either spotting or bleeding almost every day. I am quite annoyed with my GP who doesn't seem to care, told me it's quite normal for your period to affect your life and refused a blood test, telling me to just take some over the counter iron. She didn't even warn me that the most common side effect of this pill is frequent bleediing. So I took this for 3.5 months, reading everything there was on the internet about how it is meant to settle after 3-6 months and tried really hard to put up with it. I bled almost the whole time, with just 10 clear days but 10 days ago I had another really scary bleed. It was uncontrollable and took ages to stop. I had to sit on the toilet for ages as the thickest sanitary towels would not contain it for more than a few minutes. I am also a teacher and this was really stressing me out as I was living in constant fear that it will happen during a lesson. I was taking ibuprofen or transexamic acid which controls it but you can't take these forever. 

Then last Friday I had another episode at work, the worst by far. I had to dash out of class and just couldn't stop bleeding. It was really scary. I was passing massive clots and just couldn't move away from the bathroom. Had to use a tena lady and my friend drove me home. I called the surgery who offered me an appointment at 4pm (it was 10.30 am) or told me to go to A&E. I was really scared and called 111 who sent an ambulance as my heart rate was through the roof and I was short of breath.

By that point I'd taken a lot of transexamic acid which eventually worked but the whole thing lasted 90mins and was the scariest time of my life. I don't remember childbirth being that bad and I'm sure I didn't bleed as much. I was put on a drip and admitted to a ward but because the bleeding had subsided, they didn't perform any procedures. They also couldn't refer me directly so had to write to my GP and told me to call them on Tue and chase it up as they would need to urgently refer me. I was put on Utovlan which is norethisterone and this stopped the bleeding straight away but I only have a 10 day course and am already dreading what would happen when I stop it. Surgery are supposed to prescribe me a lower maintenance dose the Dr said but they are so uncaring and all they want to do is give me the coil which I am not keen on.

Really sorry about long post but would love to hear from someone who's been through something similar. I am scared of drastic procedures but over the weekend have decided that I want a hysterectomy as this has been going on for far too long. It stopped me running and exercising which is something I love and now it's stopping me from doing my job which I also love. I have been signed off for a week, possibly longer, and scared to leave the house in case it starts again. I am also quite aneamic as a result and keep getting out of breath after just a few steps (was finally prescribed high dose iron tablets for this). 

Any similar experiences and advice will be much appreciated. This thing has taken over my life and I hate it :*(

2 likes, 10 replies

10 Replies

  • shawnalb
    shawnalb jo4848

    Posted

    hello!  we had similar issues.  calm yourself down.  its normal and i myself bled 21 days   my sister in law had to wear adult diapers some days to be safe.  i had vaginal us.  one fibroid  dr sais not cause of bleeding  just hormones.  i took progesterone only pill and it stopped in 24 hrs  i did  3 mo course and was back to normal periods (when i had them).  i had one more bad time and it appears it might of been my grand finale dr thinks.  took pill one more time.  i was anemic too,  mildly.    i trust my ob clinic and love my dr.  sometimes drs think we are overwhelmed and a bit of a hypochondriac and will not want to test us just because we are worried.  if you push for it they will,  but most likely it’s us being anxious. i went Er few times myself for panicking and it was a waste of money.  but it was worth my peace of mind.  i just try to talk myself thru the mental monkey i call it.  i love this sight.  i dont feel alone at all now.  i had no idea so many women feel cruddy like i have.   its getting better slowly.  ill be 50 in few mo and been dealing w various symptoms over a period of 5 yrs and never knew it was peri!!   we/you will be ok.  clots are normal and some bleed more or longer than others.  smile
    • jo4848
      jo4848 shawnalb

      Posted

      do you remember what progesterone pill worked for you please? The one they put me on was too weak but when I went to A&E they gave me norethisterone and it worked well. First time I've stopped in 3.5 months, fingers crossed!

    • shawnalb
      shawnalb jo4848

      Posted

      it was called the camilla pill.  progesterone only.  generic norethendrone?  might be spelling wrong.  it worked wonders  had to do one course three mo.  got me back to normal then i had one last hoorah  lol

      dec 2016 and no period for 9 mo until sept 2017   that was light to normal and about 4 days and nothing since.  going on another 9 mo again.  

    • jo4848
      jo4848 shawnalb

      Posted

      Thank you. It must be norethisterone (had to look on the box as I can never spell that!). 

      They first put me on a different one but having looked into it now, it's a different progestin (desogestrel) and it's a very low dose. That actually made it worse and I went from having the very heavy but at least regular periods to bleeding non-stop for the 3.5 months I took it (only had a few clear days here and there). After my last episode the A&E doctor gave me high dose norethisterone which worked like a miracle and I stopped bleeding within 12 hours. As in nothing, not a trace! It's a 10 day course and it say expect to start bleeding 2-3 days after you stop the pills and I'm dreading it as need to go back to work. I have been given more of it to take later on in my cycle but have also read about a lot of ladies who have to take it non-stop and it really thins the lining so I'll discuss this with my GP. 

      Starting to feel normal now but still cannnot not wear a pad, just in case. Yours starts promising, hopefully you are done, bliss! Can't wait xx

  • rachel13481
    rachel13481 jo4848

    Posted

    Your experience is what happened to me in my 40s!  I also was a teacher!  I had multiple heavy bleeding episodes over the years along with "periods" lasting for 2 months.  My understanding is this:  your uterine lining is building up and not shedding properly during the menstrual cycle.  Overtime, your lining will become quite thick and you can pass a lot of blood and clots quickly.  It is being caused by an imbalance of progesterone and estrogen.  You have too much estrogen and not enough progesterone to balance it.  I was stubborn and did not want to have a hysterectomy.  I had several D&Cs to "clean out" the excess lining and remove polyps.  Eventually, taking progesterone only and treating my high blood pressure calmed the problem down.  If I stopped taking the progesterone, thinking all was well again, I would have another episode.  I hope you feel better soon.  I do remember how scary it was and how hard it was to carry on teaching!

  • jo4848
    jo4848

    Posted

    Thank you both for replying. Please, believe me, I am not going over the top and sorry but don't think that's normal. I was passing clots the size of a fist (sorry TMI) and it was literally gushing out. If anyone bled this much out of another part of their body, they'd be requiring urgent medical help straight away. Yes, it probably happens but we shouldn't have to put up with this and let it rule our lives.

    Rachel, yes, being stuck in a classroom makes it even worse! What progesteron pill were you taking? I tried Cerazette but I believe this caused the constant bleeding. Before, they were heavy but at least it would be just spotting in between. And yes, totally agree about the high estrogen/low progesterone theory. Researching doses in different progesterone only pills revealed that Cerazette has a lot less progestin compared to others so I might ask for a different one to try or just take the nerothisterone most of the time if that's possible.

    How long did your ordeal last? I am willing to try the ablation or D&C but if not, I will be happy to have a hysterectomy, just so that I can get my life back.

    Thanks again for replying x

  • rachel13481
    rachel13481 jo4848

    Posted

    I ended up using Compounded Progesterone Capsules from a compounding pharmacy.  I was allergic to several other types of progesterone because they contained a peanut related oil.  Sorry to say it took a few years to settle down.  I would have a few good months then a few bad months. I would have done an ablation but at some point a biopsy showed precancer cells and therefore the doctor could not offer me an ablation.  I still have regular ultrasounds to measure the thickness of my lining.  I took the progesterone for years because if I stopped taking it I would have another episode.  The bleeding was out of control as you described.  
    • jo4848
      jo4848 rachel13481

      Posted

      OMG Rachel, we seem to have another thing in common - the peanut oil! I have a really pad peanut allergy which once led to an anaphylactic shock. And I recently discovered the soy oil danger thing when I went to collect my second pack of pills. The first 3 months supply was a branded one but more expensive so they tend to offer you a generic one which 3 members of staff in the surgery and pharmacy assured me was the same as it contained the same active ingredient - desogestrel. So I reluctantly collected my pills and it wasn't until later on, when I'd nearly read the whole information booklet, I saw the tiny warning at the bottom that they are not suitable for peanut allergy sufferers! They had to give me the branded pills after that. Apparently, a lot of generic/non-branded meds contain it so have to be really careful and always read the information leaflet. As it turned out, those pills didn't agree with me and made me bleed the whole time (3.5 months) but the A&E doctor put me on norethisterone and this did the trick. Hope it lasts. I have read some take it non-stop so will discuss this with my GP. As I said in my reply to the other lady above, I have been completely clear since Fri, within 12 hours of starting this course, but still wearing a pad as I just don't know when it's going to start again. Haven't left the house since Fri too! Planning to go back to work on Mon as I only have 2 lessons (the older students have now had their exams and left) but still dreading it...

       

  • susan58415
    susan58415 jo4848

    Posted

    Hang in there and keep fighting.....
    • jo4848
      jo4848 susan58415

      Posted

      Thank you so much!

      I have been taking the norethisterone for 9 days now and no bleeding apart from one random occasion which wasn't heavy. Dreading coming off it tomorrow. Have a telephone appointment with my GP tomorrow and might ask if I can stay on it for a bit longer as I'm not ready to start with the horrors of bleeding again. Still really weak and dizzy and can't go back to work yet sad

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