Unpredictable spotting on norethisterone

[LoneWolf91]

Hi can any shead a light on why I'm spotting on norethisterone yes I've been on it straight for 7 months but due to end it next month ( dreading it ) but it's annoying to have this happen every now and then if anyone has been on this medication for a long term purpose can you share your experience please thanks x

[Janeyjane20]

Hi I’ve been on this now nearly 2 years straight I am 55!! No sign of menopause and have numerous fibroids so extremely heavy bleeding but every couple of months or so I do have heavy bleeding for a couple of days or spotting on and off randomly they suggest a hysterectomy but with Covid around I’m definitely not going into hospital I have had scans cancelled anyway but like you I am scared to stop northisterone as I know my bleeding will be uncontrollable I have no other side effects though which is good 👍 good luck with everything I would just like menopause to start now

[LoneWolf91 in reply to Janeyjane20]

I've been experiencing spotting on and off for 3 months now and had a breakthrough bleed which lasted 20 days in March! I'm sick of this spotting it's annoying and scary I just want it to stop I dont understand why norethisterone causes this as I honestly thought it stops all bleeding .... I guess I was wrong the period cramps are legit PAINFUL and have to take feminax daily to help it go away but I find sometimes it makes the bleeding abit persistent...I dont know what other medications to take that doesn't cause bleeding all I take is ibuprofen ( feminax)

[Lovepenguins]

Hi there sorry to hear you are unwell. I started norithisterone in 2018 out of desperation with endometriosis on bladder bowel and pelvis and for 7months it worked and I had my life back after 20 years of suffering. I had a laparoscopy in july as the pain became unbearable last year with bleeding through but due to an overdue smear I needed a colposcopy and had an abnormality removed. I was put into prostap and HRT which made it worse for me and in the operation I had stage3 endometriosis and it was removed. I tried the coil afterwards and again it perforated my uterus so finally went back on norithisterone which helped!

However in january I became really poorly with sweating palpitations nervous energy etc. They found that I had gone into menopause due to the norithisterone which caused hyperthyroidism. I'm 31 and never experienced it before with thyroid and had to go private as my GP didnt believe I was menopausal or hyperthyroidism!

I started on oestrogen and all thyroid meds but unfortunately the endo pain is returning and I have put on 2.5 stone! So I dont think I can stay on norithisterone alone as I'll end up more menopausal.

It is an amazing medication but long term for me it stops working causing breakthrough bleeding and all of the above which is heartbreaking as it's back to the beginning again for me.

Really hope you get some answers x

[LoneWolf91 in reply to Lovepenguins]

The spotting is worrying me daily as its need on and off daily and the cramps are extremely painful esp in my left side ....I take feminax to help but sometimes it causes spotting to get worse but idk what else to take for the pain I just want all this crap spotting to go away

[LoneWolf91 in reply to Lovepenguins]

Was it norethisterone that was gaining the weight on you or summit else just wondering as I've notice my weight has fluctuated also

[Lovepenguins in reply to LoneWolf91]

Hi hun glad you read my message. I'll reply to both of yours on here x I ended up on oromorphe tramadol and cocodomol as it became so bad I felt I'd died inside honestly it ruined me. I'm thankfully off all that now but get scared when it flares. I'm on pre gablin now which took months to work but was for nerve damage from the endo. The weight can be caused by norithisterone but for me it was my thyroid medication and the oestrogen. Its defo worth seeing your gynae even private if you can for pain relief as every woman is different and the gp never understands how bad it can be. I used hot water bottles heat packs etc. The yoga ball helps too as I have pelvic floor dysfunction. Xx

[LoneWolf91 in reply to Lovepenguins]

So your no longer on norethisterone how long was you on it for and was it straight back 2 back packs with no breaks or?

[LoneWolf91 in reply to Lovepenguins]

Also I got told by my GP that norethisterone doesn't cause weight gain but water retention weight only! :/ she said if I've gained weight it be down to what foods I've eaten including drinks but I did have prostate 3 last year which didn't work and caused more issues and I think it's that what's caused the weight gain as I've never gain rapid weight before tbh in match I was 10st 11lb before that I was 9st 5lb in September 2019 but now I've not weighed myself I'm so so so scared to do so as I got a big issue with weight gain as it effects my confidence badly

[BrightLights88]

Hi so my gp had to change me from microgynon in December to Noriday which is the same group as norethiserone as my migraines were coming on with aura. I started Noriday dec till March, had normal periods, no pain till April period lasted 3 weeks, extreme pain was worried I will not have much pads due panic buy I couldn't get hold of pads anywhere i told my gp period isn't stopping she told me to start norethiserone I did and period stopped. Then a few days later I started spotting and then period started. I stopped the norethiserone and only taking my Noriday again as normal i don't think norethiserone is for me its given me severe endo pain and I have been endo free since aug 2019.

[LoneWolf91 in reply to BrightLights88]

So sorry for your bad experience I've been on norethisterone only since last Nov and still on it now straight with out breaks due to extremely long periods monthly my gyne wants me to stay on them till my ultrasound date and operation date then end it 10 days before hand but I'm worried so much it's going to be extreme bleeding and unstoppable

[LoneWolf91 in reply to LoneWolf91]

All last week I've been having spotting daily also it was annoying as it was on and off and the period cramps honestly it was extremely painful to the point I couldnt deal with it no more I've never had extremely painful cramps neither I think the cramps could be endo cramp instead due to the pain and pressure

[BrightLights88 in reply to LoneWolf91]

My best pill was microgynon I would hands down go back on that atleast I knew I had a 6 day period and knew when to expect the endo pain. I see my specialist in july thats if covid isn't in the way which is my 6months follow up. But I have been sent for a urgent transvaginal scan as mri atm is not available but I had to cancel the private scan as I'm still on my period. I feel like that pill as messed my cycle.

The gynae on the phone told me that its more likely to be ovulation pain and hopefully not new endo growth. Now I'm think it may be ovulation pain as I have not had any pain once my period was on day 5..Not even a back pain.i know it does state that it could take upto 6months for the body to fully compatible with noretherstone so you may get the bleed, spotting or none of it. So hopefully your body should start to settle down on it.

Have you been given a date i hope it all goes well. All I can tell you is that surgery date will be a big relief. I remember being so excited and the nurses looked confused, I told them I came a long way these 11 months and this was a closure for me to start again on a new diet plan and manage me endo.

[LoneWolf91 in reply to BrightLights88]

I haven't got a date yet but I hope it happens this year as I want to end norethisterone but I'm abit scared due to the withdrawal bleed and first period again I got no idea wtf its gna be like

[BrightLights88 in reply to LoneWolf91]

my first period after surgery was 3 months later as I was tricycling on the pill. it wasn't bad the pain was like a normal period cramps but that was because I caught a bladder infection from surgery then my period were normal no pain. 7 Months later ovulation pain was horrendous lower back pain and period pain with period for 4 days and period went on for 3 weeks. I had another period last week and it wasn't painful it was normal again without pain just taking slow to finish thats all.

[Afrohair]

I’m not sure if my post will be helpful or not but my endometriosis specialist always recommends if something doesn’t work within two months to stop treatment if possible as it does not help endometriosis when you bleed excessively only makes it worse you would have to access your situation was you better before northistereone or are you better now ? X

[LoneWolf91 in reply to Afrohair]

No when I wasnt on norethisterone I had prostap 3 and it didn't work just made things worse for me but then i wen ton norethisterone everything stopped but in march the bleeding happened and spotting but no period yet thank god but my gyne wants me to keep taking norethisterone till i get a date for ultrasound and OP date but tbh i dont want to stay it on it for more months and just come off it but saying that I'm so scared as I've never been on norethisterone this long max was 3 months and now I've been on it since last nov 12th straight no breaks! But I'm thinking of ending it next month or August as I still have 3 months of the medication but idk my mind wants to just end it and the other is saying DONT

[LoneWolf91]

Also I dont know how far this is true or if it's just click bait but does norethisterone thicken ur uterine lining or does it stay the same cause I'm confused about that one

[LoneWolf91]

I've also been noticing yellow/orangey discharge daily with spotting also it's so frustrating that it's been happening for a little over a week now but everything was fine yesterday but this morning its acting up again especially when I go for a no.2 sorry Tim but no idea why it's happening

[Afrohair]

If it was me and your instinct said stop I would stop 🛑

[Afrohair]

You must remember it’s your body and we don’t always have to take advice of “professionals”

[LoneWolf91]

I agree so much I do want to stop but so scared too as I dont know what to expect I'm getting prepared to stop though but thinking about it and when as the cramps are horrendous at time and some pain killers dont work as much but i find warm water helps for some reason but I'm thinking maybe at the near end of this month I'm going to end them just have to prepare my mind for the hella bleeding and i cant tolerate pain

[LoneWolf91]

3 days I've been okay and now the spotting has returned ugh this is driving me insane!!! I'm really thinking hard now on stopping it sometime next week or so cause it's becoming a joke