Is norethisterone a treatment for endo?

[charlottecarter91]

I have been battling endo for a decade. Last year was awful. I had to have TFMR as my baby boy was incompatible with life. Apparently unrelated to endo or surgery whilst pregnant. I am now on a very long list for surgery to remove stage 4 made even longer due to covid 19. I have just stumbled across a post on google that the POP norethisterone can treat endo?

[Moon_maiden]

So sorry to hear what you’ve been through.

I was on desogestrol from December to March, didn’t really help much apart from emotions improved.

Since follow up now started Zoladex which gives fake menopause and possibly stop endo progress and hopefully improve pain, but I believe it’s a max of six.

Everyone reacts differently to medication, worth talking to GP or gynae, even over the phone.

Hope you get some relief soon.

[charlottecarter91 in reply to Moon_maiden]

Thank you yes everyone is different. Unfortunately due to the times my gyne is doing others things and I cant speak to them. It's out of my hands for now but will ask them when all Is well.

[Starfish123]

I was given norethisterone for treatment for ongoing bleeding. It stopped the bleeding whilst on it but within days of stopping I experienced a very painful period worse than normal. Whether it helped with Endo otherwise I’m not sure, I wasn’t as breathless whilst taking it but I can’t remember any other benefits. I didn’t know I had endo at that time but it was stage 4 when found a year or so later.

[charlottecarter91 in reply to Starfish123]

Thank you this is all very helpful for me hope your doing well

[Linley]

Hi!

So sorry to read you had to have a TFMR do hope you are healing in mind and body. Sending you a big hug.

Norethisterone is a progestogen and I was prescribed it to stop/delay my periods as the were very heavy. Once I had a Lap and Endo was found I was prescribed another med to dampen down and control my periods. Speak to your GP to see if Norethisterone would be suitable for you until you have your surgery. Keep safe.

[charlottecarter91 in reply to Linley]

Thank you for your kind words I'm learning to getting used to feeling a bit different.! I have spoken with gp and they cant get any norethisterone in pharmacy near me due to covid! They also said due to me having to avoid pregnancy it's not very reliable if you miss one so may be best to steer clear! Good luck in your journey

[Lovepenguins]

So sorry to hear what you've been through. I've had endometriosis 21years and am 31. Last year I started norithisterone 3 times a day continuous to try and delay a 3rd laparoscopy and I felt amazing for 7months. Just before I started it I was in agony with my bowel bladder and pelvis, bleeding from behind etc. Then the symptoms returned with a vengeance and I had to have a laparoscopy where they found stage3 endometriosis and removed all of it however endometriosis doesn't go as you know. I had nerve damage and pelvic floor dysfunction but when the symptoms returned I had to try the mirena coil which perforated my uterus and I didnt even want it! I went back on norithisterone which helps a bit but the operation and prostap I was on whilst waiting for it put me into the actual menopause and my oestrogen became so low due to the norithisterone it damaged my pituitary gland and caused an overactive thyroid so I've been very unwell the last few months and an taking 1mg of oestrogen a day but pain is already returning. The norithisterone does help the symptoms and stops most bleeding for me but I wasnt aware of the side effects due to lack of gynaecological support. I'd say for a break of 6months it may ease bleeding and pain but youd need closely monitoring. It's so hard getting the right treatment and it's the managing that causes the worst effects but I really hope you get somewhere soon xxx

[charlottecarter91 in reply to Lovepenguins]

Wow! I have had similar problems with bowel bladder pain etc. Itsreally not nice and doesn't seem fair they dont really know enough about it as every case is so different. I am at a bit of a down stage where I am fed up of pillar to post drs i feel i have my hands tied. Thank you for your reply it really helps talking to you all

[Afrohair]

It’s supposed to stop bleeding but did nothing for me

[Beestaree]

So sorry for your loss 💔

I've been taking 2.5mg of norethisterone for 9 months. My period became much lighter but no other benefit.

My gynae told me it was going to do wonders, including treat my adhesions.

He was planning to up the dose a month ago, but couldn't due to another condition I have.

[charlottecarter91 in reply to Beestaree]

This is interesting. It's strange I've never been offered this before ? thank you for your kind words it's great to talk to like minded people