Norethisterone

[SK2021]

Hi all hope everyone is well!

Just needed a bit of advice about using norethisterone long-term. I have been using it pretty much for the last 4 years as I haven’t responded to anything including zoladex injections and the mirena coil. I’ve just had a scheduled break from the norethisterone (every 3 months) but I’m finding that it’s not working now that I’ve restarted it. I’ve been taking it for nearly a week and I’m still bleeding feeling sick and In so much pain and generally just feeling like I’ve had enough. Normally it kicks in 2-3 days after restarting. Has anyone else had a similar experience with norethisterone? If so what gave you relief?

Thanks In advance xx

[TennisAM]

Hey

I don't take norethisterone but there are many natural things that work for pain relief.

Pick a carrier oil (jojoba/sweet almond oil etc etc) take 100mls of the oil and add 50 drops of clary sage essential oil and 10 drops of black pepper essential oil. Mix well and apply small amounts to your abdomen/pelvis and back. This combination is proven in clinical studies to work for endo pain.

There are Chinese herbal plasters you can buy online which are great for endo pain relief. If you want the link to the amazon page to buy these then please send me a private message.

Cbd or cbg oil (more expensive option) as the half life is only 5 hours, but they do work for some women. The stronger percentage is better so you don't use too much.

Tens machine - this could help with the pain, it helps some women.

Gentle yoga could help too. The stretches help the congestion in the abdomen

Has the GP given you a decent painkiller? Etoricoxib 60mg (taken after omeprazole to protect the stomach) is a good one as it has a half life of 22 hours so should last up to that length of time. It's a NSAID and is clinically proven to cause less upset stomach etc.

Hope the symptoms go away soon x

[SK2021 in reply to TennisAM]

Hey thank you so much for tour advice/tips will defo give some of this a go! I’m definitely interested in the Chinese herbal plasters. X

[TennisAM in reply to SK2021]

No worries, I've sent you a message with the link x

[Allieline]

I had that problem in the past and was very unwell with endo. For the last 10 years or so though I have had a Mirena coil (changed after 5 years) and taken cerelle continuously (no break). This has worked amazingly well for me and I’ve had no symptoms in all this time. I’m not sure it that would be an option for you.

[SK2021 in reply to Allieline]

Hi thanks for your reply! I’ve tried both the cerelle and mirena coil and not had much relief with either. Think it’s surgery soon for me

[Railee]

Hi, can i ask how you got on with this? I'm currently suffering the same problem. only recently been diagnosed and have been taking norethisterone for 3 months, did my 1 week break, im now a week i to taking it again but my period seems to be getting worse instead of better.

[SK2021 in reply to Railee]

Hey my bleeding did settle with the norethisterone it’s more just spotting now. What dose are you on atm? Maybe your dose needs reviewing as 3 months is long enough. Also I don’t have a break I’ve just been taking it daily without a break for quite a long time tbh xx

[Railee]

I take 5mg 3 times a day. For the first 3 months everything was fine. It’s just now taking them after a week break my bleeding seems to be getting worse instead of better xx

[SK2021]

It takes a good while for my bleeding to stop too if I do have a break and then restart. My consultant has increased my dose in the past. Also taking tranexamic acid for a few days reduced my blood flow x

[LoneWolf91]

Don't do it long term!!! I was on norethisterone for a full year and 6 months in 2020 and after I stopped taking it my periods became extreme 3 week periods every month no fun at all .... I decided enough is enough and went back on norethisterone last year in October and I wish I'd never did it as it only works for October till Dec 7th then I started spotting out the blue all of December and I stuck to norethisterone thinking it be okay and it will go away after a few days or so but nope unfortunately this month on the 5th a massive bleed came on with desidual casts and small clots and heavy bleeding and I'm still bleeding till this day and it's now 13 days of it .... I had a gync app on the 13th and she fitted the mirena coil but unfortunately it came out causing more pain and bleeding anyways I stopped norethisterone last Sunday as it wasn't working to stop the bleeding so far nothing has changed 😢 so looks like it's a doctors appointment tomorrow to see what she can do for me as I'm so tired and fed up now of it continuing to bleed every single day!!! Want my honest opinion DONT GO ON NORETHISTERONE .... they only work for so long until your body becomes to use to them and the stop working, I've taken norethisterone a few time over the years and now with all this bleeding and waiting for an endometrial oblation I've lost all hope 💔 I suffer with PCOS and prolonged heavy periods also but my advice is like I said above but all means if you want to try them go for it but please don't take them for LONG TERM USE otherwise you might end up in my situation and I regret it now for stopping my periods for long term and became addicted to norethisterone as it worked amazingly in the past it was a god send but now ( it's stopped working for me ) I'm absolutely gutted by it and the mess it left me in to deal with but right now it's agienst all odds of waiting for it to stop on its own which will take forever as I know it will!! Or try and see what my doctor can do for me ..... anyways GOOD LUCK x

[SK2021 in reply to LoneWolf91]

Hey oh no I’m sorry that you’re suffering so much with it. I’m similar to you I’ve been using them long term for the last few years tbh as soon as I stop them my periods are horrendous the bleeding just doesn’t stop. I hope you get something sorted with the doctor let me know how you get on xx

[LoneWolf91 in reply to SK2021]

Well my doctor will be ringing me today at some point as 14 days I've now been bleeding for and I'm so fed up of it I'm tired and got low energy .... tbh its not worth it the norethisterone as they sometimes work for short periods of time but leave you with alot of bleeding for weeks on end tbh I'm staying off them now as I can't deal with all the bleeding but still need something in the mean time to try and get it to stop bleeding but I feel all hope is lost

[SK2021 in reply to LoneWolf91]

I know the feeling I really do ☹️I was supposed to finally have my larproscopy today after waiting ages and my covid swab came back positive so it’s been delayed again. No symptoms and lateral flow tests are negative but it’s just one of them things. Hate endo!!!!

Let me know how you get on with gp. Best of luck

[LoneWolf91 in reply to SK2021]

Ugh where do I start my doctor said there isn't much she can do apart from try me on cerazette mini pill but she said to wait till Friday first to see if the bleeding stops but if it doesn't then start taking them pills but what annoys me is she said they might work they might not as they are not for heavy periods/bleeding but for contraception like seriously what's the point in prescribing that ..... but she said the only best method now is the endo albation and I don't have a date yet for that

[SK2021 in reply to LoneWolf91]

I tried cerazette in the past used it for 3 months bled non stop. Could she not have given you some tranexamic acid tablets to reduce blood flow they usually help me

[LoneWolf91 in reply to SK2021]

I'm currently taking tranexamic acid now ... 6 a day... but I'm not sure right now if they are working as the bleeding is still going

[Erica448 in reply to LoneWolf91]

Gosh I have been on northisterone for 10 months due to continuous bleeding I have decided to come off to see how my periods are so far been off for five days just waiting for the period to start now. I’m literally praying that I won’t fall back into the cycle of heavy bleeding. I know the pain and hopelessness you feel when you continuously bleed. I will keep you posted.

[LoneWolf91 in reply to Erica448]

I've been bleeding since the 5th Jan and I'm still bleeding 😫 I'm so sick of it now just wish it would end! It's not fun at all esp with continuous bleeding and small clots coming out with desidual casts still ..... I got no idea what is going on!! But I feel like it's here forever I don't want to take anymore progesterone pills 😩 as now I know what it's does to me and all this started whiles I was on norethisterone so I came of them cold turkey last Sunday and more heavy bleeding happened!!!! 17 days and still going ..... in my eyes I feel its just gna keep going all month even though it should be ending its not I've taken tranexamic acid for 3 days so far and it did start to lessen but then it's just come back again tonight ..... I wish I could just rip my ovaries out right now

[Erica448 in reply to LoneWolf91]

I know what a nightmare it is. Just so sad 😞 that doctors are unable to come up with a solution that actually stops the bleeding for good. I have had to larproscopy and stillNo improvement they said it’s hormonal. But I have been off northisterone six days and not bleeding so I am staying positive.

[LoneWolf91 in reply to Erica448]

Almost 3 weeks for me! But my doctor prescribed me desogestrel 75mg ( 12hr window) mini pills but not sure if they ate going to work I've took one yesterday but really don't wanna take more as I feel it won't work and just make bleeding worse

[Dee_EndoUK Moderator Endometriosis UK in reply to LoneWolf91]

Hi LoneWolf91

It sounds like you've had a really difficult time of it. Hopefully the conversation with your doctor will be productive and show you a manageable way forwards.

You've probably checked out our website already - if not, we do have an endometriosis treatment pack that can be downloaded from endometriosis-uk.org/endome... - it includes information on pain relief, hormone treatments and complementary therapies. Perhaps there's something you haven't tried already that may possibly help?

Wishing you all the best. Take care

[Erica448]

I ended up going 31 days off Northisterone and felt so happy but unfortunately came on heavy and never stopped so back on it again. I never wanted to go on the mirena coil but have been given a date at the end of March. Praying to God for a miracle at this point.