Trying norethistat: Thanks to the... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,354 members10,542 posts

Trying norethistat

emmaj profile image
14 Replies

Thanks to the previous posts about heavy menstruation I went to my doctors yesterday, he was a locum and i was a bit unsure as to whether he would agree to it,but he knew about antiphospholipid a litttle,and with tears i explained how i wear three sanitary towels at night and still flood,and cant really go out for at least one day a month and he was really understanding,he had a read up and agreed that although its only really used for delaying periods for convenience i.e a holiday etc he saw no reason why it couldnt be used if that was my choice,and it was a good starting block given that its only in your system for 8 weeks. I have tried depro povera in the past and it really messed me up hormone wise so we'll see,but thanks all-i even knew to demand the injection instead of tablets as it was said on here that was what was needed-such a relief! Has anybody else had more pmt with it though or does it appear to have sorted that to?x

Written by
emmaj profile image
emmaj
To view profiles and participate in discussions please or .
14 Replies
janjan78 profile image
janjan78

I am on this & think it's great!!! :) I had an awful time with my monthlies from the moment they started at 11yrs old until just about 2yrs ago (i'm now 36 btw!!).......tried everything from pills (prior to APS Dx), coils, mini-pills, womb scrapes, depo inj., mirena coil,norethisterone tablets & FINALLY the norethisterat inj. it's the simplest of things but has brought my monthlies in order & given me a life again.....I can wear light coloured trousers again!!!!

I don't have a period as such anymore I get 1-2 days together throughout the year of extremely light bleed & no pain this may happen 2-3 times but it's almost non existant which if you have horrendous monthlies you don't care whether you ever have one ever again!!!

Anyway I had mood swings REALLY badly every month (don't know how I'm still married!!!) but they have completely eased off.......I do still get a bit short or cranky around the time when I would be due on but I can see it myself & hubby laughs at my phantom period monster for a few days!!! :D lol

I will say to make sure you get your injs bang on time, as I've found from experience, that even if you're so much as a day late you get a heavier bleed & awful cramps :( my well woman nurse & myself work together to suit ourselves.....like if I am going away around the time it's due we give it a few days even up to a week before & the same with herself we work around her schedule....but never ever any later than the 8wk mark :)

I really hope this is the answer to your monthly issues as it certainly was for mine......wish you well with it & remember it may take a couple of shots before things settle down be patient :) contact me anytime :)

emmaj profile image
emmaj

Thanks hun, im really hoping this is the one, otherwise its a referral and i just want everything whipped out!! Cant cope at the moment-im on a permanent downer, a difficult child to deal with and my home is a very difficult one to keep- i feel like im on the brink of a complete meltdown and just numb on the verge of depression like pmt but all the time, im really hoping this is one less thing to deal with as im tired and weak more so for two weeks out of 4 and my life just hasnt room for this!x

Hi I dont have really bad periods like U, they sound awful, but I do suffer with really bad ovulating. Every month I am in so much pain that sometimes I can't stand up and walk. Was just wondering if U have this aswell. Doctors have said there is nothing they can do and just to take painkillers which dont work.

emmaj profile image
emmaj in reply to

I had that for years,it started when i was 18 and it came out of the blue,one month i just felt the pain come and it was horrendous, i couldnt sit walk or stand, and i had to go home from work every time - it got better over the years but i stlll get a day a month where it is painful, i found codeine worked the best- i went round the system and had scans cameras and it was all very frustrating, i really feel for you x

janjan78 profile image
janjan78 in reply to

Hi lewchar1 :)

I can relate to that aswell......used to get one day a month where I'd be going about my usual stuff & bang get floored with a crippling pain in my ovaries and it would last ALL day & like emmaj a strong dose of codeine seemed to be the only thing that helped ease it :( over the counter meds didn't even touch it......but within 24hrs I was like brand new, though I new my monthlies weren't far away after the pain :( *touch wood* since having these injections every 8wks I no longer get floored with a day of pure agony :)

I am just about to start warfarin can U have the injections while taking that? Id try anything to stop the pain!!!

emmaj profile image
emmaj in reply to

Im on warfarin and aspirin and im about to start it, im not too sure about the pain side of things im merely trying it to supress my periods hun-maybe worth a chat with your doc though xx

in reply to emmaj

I will speak to my doc when I next see her thanks for advice :)

emmaj profile image
emmaj in reply to

Let us know how you get on, if you search for the name of it on this site you can read more on it before you go- i only by chance stumbled on it here so i made a quick appt full of excitement!x

GinaD profile image
GinaD

I'm now 59 and menopausal, so my experiences, though similar to your descriptions, we're years ago and ( I hope!) there are new meds since then. Years before my APS symptoms I had horrid periods! Pain, buckets of bleeding, and feinting spells. I couldn't tell you how often I ended up in the ER or in student health where various docs would load me up with various opioids. But nothing worked. I would spot and know I had about 1hour to get myself to a place I could lay down for the next 12 hours. Sometime I couldn't get myself into such a safe place, I would have to walk, I would feint, hit the floor, and then try to convince whoever was around me that , no, I didn't need to take an ambulance to a hospital - just leave me alone and i'd be fine in a few hours. No one ever listened to me and off I'd be sent to another hospital and to another bunch of doctors who were sure I had: An ectopic pregnancy! (Nope.) Endometriosis!(Nope.) A fibroid tumor! ( Nope.) Some sort of horrid infection!( Nope.) Appendicitis" ( yep, that was be ER doc's theory, but again-- Nope.)

Until Dr Patchel suggested I try that ( then ) new fangled naprosyn. Which changed my life! The pain and bleeding were still there, but now I didn't pass out!

I know that naprosyn is a no no with warfarin, ( or, if taken, use a lot of care!) but I thought I'd ask if you had tried it.

MaryF profile image
MaryFAdministrator

I am glad you are getting some help, perhaps too they will check your iron and b levels as with blood loss like that it may leave you a bit compromised. MaryF

emmaj profile image
emmaj in reply to MaryF

thanks, i see neurology in london this month so ill get the results then, i asked for my b12 to be checked last appt x

MaryF profile image
MaryFAdministrator in reply to emmaj

Good, I am very careful with my diet, but have low iron currently which I am pleased showed up after I asked for more detailed tests recently. MaryF

emmaj profile image
emmaj in reply to MaryF

i buy ferrous sulphate over the counter and take one a day, on warfarin so i cant exactly even up my greens!! I am vitamin d deficient and i take tablets for that, but i know when im low in iron as i get restless legs and sores at the corners of my mouth x

You may also like...

Trying to get a diagnosis

has run more tests, but I just wondered if I’m the only one been in this situation. Many thanks in...

Trying to get more information

that I only have problems in pregnancy and that I'm high risk of a clot and that's it, I've only...

Trying for baby with APS

heart. Do you think more is going on due to antiphospholipid syndrome?

Acenocoumarol - anyone tried this instead of warfarin?

anticoagulation team have really been struggling to stabilise my INR despite using a coaguchek self...

New to APS - Trying to Get Pregnant

months of anticoagulation therapy. Even though I was only 30, no one on my care team thought it was...