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Experiences of Northisterone

(31 Posts)
itsgettingweird Wed 29-Jul-20 07:50:59

Anyone ever taken this?

About 2 years ago my periods got very heavy.

First started that for 2-3 days I'd flood and then have lighter bleed for 2-3 days.

Tried tranxenamic acid but this just made the first 4 days light - then 24 hours after I stopped I'd have sudden floods with large clots.

Started mini pill in December. This changed my periods but rather than make them better it increased frequency and doubled the length of time. They were lighter but I'd get heavier throughout rather than heavy then lighter which is what I thought was usual?

Started beginning of June with spotting after my period (which lasted 11 days) ended.
Then 1/7 started with spotting. Week later light bleed, into medium bleed and then heavy bleed.

The issue I had was I wouldn't bleed for 12-16 hours and would think my period had ended and then suddenly it was like someone turned on a tap. The clots were like a ping pong ball and it smelt very metallic like actually bleeding iyswim?

Started northisterone on 17/7. Took for 10 days. Last tablet taken Monday morning and started Desorex again Monday evening at usual time.

I am aware period can start when northisterone is finished.

So last night was horrendous. Sever cramps that I ended up taking ibuprofen and paracetamol for. Then I had a bleed but it was very liquid and thin blood.

I'm having coil fitted next Wednesday.

Anyone had experience of this? I feel like my life is being taken over by worrying about bleeding everywhere. Fed up of wearing a pad all the time. Cannot wear a tampon because with bleeding not being continuous. (? I'm sure that's true?)

I think I'm noticing it more because with less loo's open publicly it's limiting me going out and when I do go somewhere with a loo the queue is horrendous. (I have a radar key as my ds is disabled and I'm seriously wondering if I can use this in an emergency as this is a medical issue?)

Please help me. (Tea and sympathy welcome!) is it likely the coil will make a difference as bleeding stopped within 24 hours of starting northisterone?

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itsgettingweird Wed 29-Jul-20 14:03:09

Just me?!

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auntieElle Wed 29-Jul-20 14:08:41

That sounds a nightmare, OP! Do you feel that your GP is across things fully? I had flooding during perimenopause and was offered a progesterone but didn’t take it as I was worried about possible MH side effects, so I don’t have direct experience. But I do know how overwhelming very heavy bleeding gets.
It sounds like you need more medical assessment and advice. Has a referral to a gynaecologist been suggested?

itsgettingweird Wed 29-Jul-20 14:15:35

No referral being suggested but I don't think there's any reason to as no symptoms iyswim?

I did wonder if peri menopausal but GP has never mentioned this.

She did say it can take 6 months for coil to settle things down again. Perhaps they refer after this if still bad?

Strange thing is - other than being exhausted due to broken sleep last night (had a nap!) I've had no more pain or spotting today.

I'm hoping coil works quickly as work in education so I can sleep in day now because on holiday!

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DippySticky Wed 29-Jul-20 14:16:53

northisterone is used to delay periods. But it only stops the bleeding so you'll still get all of the period symptoms IYSWIM.

Has this been properly investigated by a gynaecologist? If not, it needs to be.

itsgettingweird Wed 29-Jul-20 14:42:24

The northisterone stopped the bleeding for 10 days. After a few I stopped having period symptoms.
I'd already been increasingly bleeding for 17 days at that point.

Can I still have coil fitted and then also see gynaecologist? I'm really worried about the bleeding starting up horrendously again

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BigButtons Wed 29-Jul-20 16:05:19

I took masses of doses of norithistrone to stop endless and increasingly heavy bleeds after having the mirena fitted.
Once I finally managed have it removed ( strings had disappeared) I stopped the nori.
Few days after I bless very heavily for a whole them it stopped and went back to normal.
I have tranexamic acid for times when bleeding is severe and that helps a lot.

ohdearmymistake Wed 29-Jul-20 16:11:40

My experience with it was horrendous never ever again will I take it.

I bled for 12 months non stop, GP useless I paid to see a gynaecologist who gave me it so that I could get an internal scan.

I was in the supermarket on a Wednesday afternoon just putting the shopping on the belt when I felt the woosh. As I was nearly finished I carried on.

Wednesday evening not too bad, woke up Thursday morning someone had turned the tap on full blast. I was getting through a tampon and towel every 20 minutes.

This continued all day Thursday all through Thursday night, all day Friday all through Friday night. I lay down on the bed Friday night and slept for a hour, it looked like there had been a massacre, I had to change me and the bed.

I decided to sleep sitting on the loo, it sounded like I was having a wee.

I had to set a timer while sat on the loo knowing I only had a limited time to do the school run.

Saturday came with no let up, by Sunday I was so knackered and felt rough I took a couple of ibuprofen and noticed that they slowed the flow down to an hour before changes. I kept going with them, gradually it eased off to nothing after about 2 weeks.

TheFormidableMrsC Wed 29-Jul-20 16:20:53

I am going to give a different perspective on this and while I am not trying to frighten anybody, I think it is worth keeping in mind. I had a copper coil for many years until I hit peri and then the bleeding became longer and at times, uncontrollable. We have a specialist gynae GP at our surgery and she recommended I had the Mirena. I really didn't want the hormones due to my age and very lumpy boobs which always made me nervous. Anyway, I had a clear mammo and then a few week later Mirena. That made things 100 times worse. Flood bled for weeks and weeks. GP removed it. Gave me Norethistrone to take to try and control bleeding, then put me on the mini pill (Desogestrel, twice a day, 12 hours apart). I was getting to the point of asking for a hysterectomy. Anyway, it seemed to settle things down until I found a lump in my boob. I was diagnosed with breast cancer in March. It seems that my use of so many hormones in a short space of time may have triggered this. No history in my family and other than lumpy boobs since my 20's, no other identifiable risk factors. I know that this can happen to anybody, but it was too co-incidental. GP had brushed aside my fears of BC when I asked about the sensibility of taking two pills a day. I just wanted to put that out there because at mid-life, I think far more care is needed with chucking hormones at you.

itsgettingweird Wed 29-Jul-20 16:44:26

I need to hear it all.

All I keep getting is the idea they think the Moroni will be the cure all.

But then again everyone told going on the mini pill stop their periods and mine got worse!

GP seems to think it'll take me 6 months for Mirina to settle things.

Should I wait that long of things get worse before presenting again and asking for help?

MrsC thanks

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DippySticky Wed 29-Jul-20 17:26:41

Personally I would push for a referral for further investigation. GPs are terrible for dismissing everything as hormonal and trying to fix it with birth control.

ohdearmymistake Wed 29-Jul-20 17:43:28

Fingers crossed for you MrsC hope all is/goes well.

auntieElle Wed 29-Jul-20 17:53:42

Also think you need to go back to your GP and not carry on like this. Also ask them to check your ferritin as this level of bleeding can deplete your iron stores and leave you exhausted.

auntieElle Wed 29-Jul-20 17:59:51

Here’s the patient info from NICE:

And a decision-making guide shared by NICE:

Just that you can have an overview before you speak to your GP again.

Ulysses Wed 29-Jul-20 18:07:36

I've been having both with heavy periods for year. Initially went on the mini pill to no affect, got the Mirena coil but it didn't make a difference and I realised a few months down the line that the strings weren't there.

At one point I was bleeding for 4 weeks continuously and I ended up take Northisterone as a temporary fix. I was referred back to gynae, got various tests scans etc (have a small polyp) and got another coil fitted in January. Bleeding became erratic so I got a prescription for the mini pill which I am still taking. Periods still feel erratic but are much lighter. Gynae reckons I should give a few more months, though I may need to put up with the erratic ness.

Re ferritin I was taking iron for a while but keep getting dizzy spells and she has recommended me taking an iron table every few days to bring my stores back up.

I'd push for an investigation too. I got ultrasound and a biopsy, had various blood tests done to see if I was menopausal (the indicators say I am not). This was at the point I had been bleeding for 4 weeks though.

Good luck.

Frownette Wed 29-Jul-20 18:08:34

That brought back memories from the past of the never ending period.

On me, norithisterone worked well and stopped the bleeding within one day.

I would say liaise with doctor because drugs work differently with people and your GP would have a fuller medical record. Keep a note of what's happened so you can give exact dates.

Flavabobble Wed 29-Jul-20 18:19:11

It's a few years ago now but I used it off and on for a few months to stop constant bleeding. It did stop it, but I gained a lot of weight, was very irritable and my hair grew at an insane speed (it kind of mimicked pregnancy but with worse mood swings) whenever I came off it the bleeding was unbearable.

I ended up on provera for six months, which wasn't as harsh on my body. Looking back it was clear I was peri-menopausal, though the blood tests I had indicated I wasn't. Only had a couple of mild periods after that.

noblebarry Wed 29-Jul-20 19:42:01

Would the Depo injection be an option - it stops periods until you cease having the injections?

itsgettingweird Wed 29-Jul-20 19:42:08

Thanks all. It's been handy to get different experiences and see what I could really be facing.

I think I was wary that the Gap just seemed to think this would work and considering every single person I know who took the mini pill periods stopped - and mine got worse! - I wanted a full picture.

I do think we tend to put up with things and just get on with it and before you know it a years passed and you've just muddled along.

I've had some more very thin, watery spot bleeding this evening.

I'm keeping an eye out.

And great suggestion from whoever said keep a record.
I started using the health app to track them a few months ago.

In fact I discovered all sorts of apps and stuff during lockdown! <most not health related!>

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itsgettingweird Thu 30-Jul-20 07:42:33

Forgive me if I'm being thick!

But I just don't understand how it happens?!

I thought the uterus wall thickened through your cycle and the period was it shedding because you didn't get pregnant?

So how the hell does a) bleeding continuously happen and b) it seem to get ridiculously thick every day and then shed?

I'm thinking it's hormones as they keep suggesting progesterone?

But I don't understand the science/biology behind it?

Anyone know or can explain (google not much use). I think I'd feel happier taking all these hormones if I could understand why.

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BigButtons Thu 30-Jul-20 11:27:06

The idea behind progesterone for birth control/ HRT is that it keeps the womb lining thin.
When I was on the mirena I bled everyday until I had the bloody thing removed. Only norithisterone gave a break from it.
I too used to wonder where all the blood was coming from if the progesterone was thinking things out.
I have worked out that I am extremely sensitive to progesterone full stop- even to my own.

itsgettingweird Thu 30-Jul-20 14:47:03

Yeah I was told progesterone would keep lining thin.

But just cannot work out why lining would be continuously thick and therefore continuously bleed? That means I can't be having a cycle?

So what? Not ovulating? Continuously ovulating? (That would explain the constant stomach cramps!)

I'm just thinking if your/my uterus is always getting thick then there must be other things if mirina doesn't work?

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auntieElle Thu 30-Jul-20 15:24:46

Anovulatory cycles can lead to heavy bleeding. This might help with understanding it all:

BigButtons Thu 30-Jul-20 17:01:34

I have/ had constant aches and cramps on any form of progesterone.with the mirena I was constant- that kind of ache you get ore period. I use to have it 2 weeks before my period so I always knew when my own progesterone levels were rising.
I get it taking utrogestan too.

itsgettingweird Fri 31-Jul-20 15:00:47

So back on northisterone as of this morning.

Another night of hardly any sleep due to cramps.
Yesterday my stomach was so swollen I couldn't even roll onto my side due to pain.

Finish straw was when showering this morning and it was running down me into shower. There's no way it's normal to be stood in a shower with blood and clots at your feet.
Then as I'm trying to comb my hair it took 20 minutes because I had to run to loo 4 times because I was just pouring.

Just decided that wasn't the life I wanted and because northisterone has worked that chances are coil will.

Also I am so sore now.

Anyway almost stopped bleeding again.

I'm scared though that it'll start again even with mirina. But I'm going to have to be strong with GP and say if it starts heavy again and doesn't stop I want immediate referral. I cannot go back to school on September if it's not sorted as there's no way I can stand in class and teach when I have to run to loo every 20 minutes sad

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