Fibroids and Norethisterone, bleeding and spotting

[Laura2306]

Hi all,

I know you've each got enough to deal with, but I've been having a difficult few months and am after some advice. In February I was diagnosed with multiple fibroids. One of them is very large. I've had several ultrasounds and a hysteroscopy booked in for this week.

My periods were very heavy, and were getting longer and longer but did eventually stop and I'd have a break of a couple of weeks. Back in March, the GP prescribed desogestrel which just caused daily bleeding. My period never stopped and it made my anemia worse. After a flood I was prescribed tranexamic acid which didn't touch the sides. I went to see a consultant and he prescribed norethisterone.

I've had a couple of floods on it and over the weekend a lot of clotty bleeds. In between it's been spotting. It's exhausting and stressful and I'm just coming up against a lack of information anywhere but here about whether this is normal and can it be managed.

Assuming the hysteroscopy doesn't find anything else, the scale of my fibroids mean a hysterectomy is the most likely course of treatment. But I don't know if I can handle the daily irregular flow that makes daily life almost impossible between then and now. I've become nervous about leaving the house and can just feel my confidence ebbing away.

If anyone could offer, if not reassurance, then a confidence that I'm not the only person this happens to, that would be great!

[Sunset-lady]

I would ask for zoladex or prostrap. I've been bleeding for 2 years - it's exhausting. Zoladex puts you in chemical menopause but if you take a small amount of HRT it can be manageable whilst you wait for an operation. Research it. It's the only thing that has calmed my bleeding down xxx there are a lot of scary stories but for women who bleed it can give you your life back. Being chronically anaemic is awful x

[Sunset-lady in reply to Sunset-lady]

There's a good face book page too x

[Laura2306 in reply to Sunset-lady]

Thank you

[Rainbow2468]

Hi noresterone worked for me brilliantly after the first month, but my doctors surgery took me off it, out me on the mini pill which was horrendous. But i tried out prostrap and it's been brilliant, hopefully i can stay on this for as long as possible x

[Laura2306 in reply to Rainbow2468]

That god you found something that works x

[Rainbow2468 in reply to Laura2306]

I hope you do too, sending you a big hug x

[Fulham85]

I literally couldn't have wrote this myself . Been on same pill for 2 months been heavy bleeding everyday became aneimic so now on iron tablets . Also got given transmexic acid and Noresthisterone and not stopping the bleeding. I said to doc I would prefer to have it all out this is all to depressing his words were ... your gynaecologist will not let that happen as you are only 38 you will have to try all other options . Just so fed up with it all x

[Laura2306 in reply to Fulham85]

The fundamental lack of authority over one's own body is profundly disenfranchising. I hope it works out x

[CoffeeConnoisseur]

Hi. I could have wrote your post Laura. I had constant bleeding because of fibroids and severe anemia that required iron infusions by IV. The mini pill didn’t work so they put me on 10mg of norethindrone. It stopped my period for 8 weeks but then it came back with a vengeance. They put me on 15mg to get it to stop and when it did they dropped me back to 10mg. Big mistake. I hemorrhaged with my next period, bled for 30 days and needed a blood transfusion. At that point they realized they had no choice but to let me have a hysterectomy. You will need to fight for yourself and explain you have no quality of life and can’t leave the house. I brought my husband with me who also advocated for me and they scheduled the next available surgery date. Turns out my uterus was 8x the normal size due to several large fibroids that were bleeding. I hope it all works out for you. The hysterectomy was life changing and I’m only 3 weeks post op.

[TealDisco]

Hi Laura,

You’re not alone, I’ve been prescribed all 3 of those same medications. Firstly norethisterone which made my initial cycle lighter but then came back with a vengeance a few days later. Then TA which should’ve helped with the bleeding, which didn't, but instead made me feel awful, weakness in my muscles and extreme lethargy, to the point I struggled to climb the stairs! I was then prescribed Desogestrel which made me so irregular that I had to take time off work. I was on more days in a month than off. Beforehand I was always regular so at least I could prepare for when I was due on. Now I’ve been told to come off it and wait for a gynaecologist appointment (which I’m STILL waiting for) and prescribed mefenamic acid to deal with the pain in the meantime. Feeling thoroughly let down and fobbed off! Had no face to face appointments since I was diagnosed and passed from pillar to post. On a plus note I haven’t had a period since coming off Desogestrel but apparently it came take 4-6 weeks to regulate again 🙄

I’m sorry it’s not a reply in positivity but only that you’re not alone. Obviously each person is different so I hope you have better luck than me! 🤞🏻

[Laura2306 in reply to TealDisco]

I hope you find a path that works x