In hospital! FEEL NORETHISTERONE, MAY HAVE CAUSED THIS!

[Jasmin24]

I was admitted to hospital, with stroke like symptoms, I feel Norethisterone may have contributed it.

I am on the road to recovery, and regained g speech back and slight weakening of the right side.

Apologies for writing mistakes and wording, I'm struggling to this of words.

I have stage 4 endo

I just want to know if anyone, felt swollen, an swelling in legs, hands face, had headaches and migraines, legs feeling heavy led like and full of pressure, water retention?

I have had a urine really bad infection. Which i have been to the doctors over and over again, constantly complaining, I want to come off Norethisterone. I thought my urine problem was due to endo pressure on tbe bladder, and was re referred to urology. I have been getting sicker and sicker, only to be told to wait to see the consultant. Consultant I rang a few times and gave up, with no help or no idea what to do.

I ended up going to out of hours to get help, twice! First time through GP service, which he requested a sample. Sample was contaminated. It took GP 3 days to tell me that, but I couldn't take the pain any more and ended up in the out of hours and got treated for the infection straight away.

My body swelled, I had water retention in my feet, ankles, hands, eventually my neck head.

I was still taking Norethisterone. I stopped Norethisterone I asked for a face to face and al the doctor could advise that I write my thoughts down, and wait for appointments. Apparently due to covid appointments are not happening.

I got lots of headaches and migraines, prior to getting really ill and don't know why I got stroke like symptoms, called Bell's Pasly which is a facial nerve virus, causing my face to drop on one side.

But now I have weakness on right-side, which will go in time.

Gynae have been unhelpful, I have been left depressed and sadden, angry.

I'm sorry for the rant, but need to heard other peoples experiences.

I am unable to see a endo specialist, has apparently some are not taking new patients. (Only at one specialist hospital, I cannot speak for the rest).

I'm still in hospital, getting more tests done, has I feel weak on tbe right-side, and my functioning and coordination isn't brilliant.

I do feel now, that People with diagnosied Endometriosis, should only be seen by specialist of this disease.

Not my gynaes who specialises in other areas.

I am upset and needed to vent. Apologies to you all.

[LifetoCherish]

So sorry to hear you’ve gone through this. I haven’t experienced or used Norethisterone but I didn’t want to read and not acknowledge your message. Try to rest up and keep those fluids topped up. I really hope you get better ASAP. If you still have hints of a UTI then steer clear of tea coffee and fruit juices including cranberry juice. The sugar in the latter far outweighs the goodness it’s meant to do. My GP told me that many years ago. The sachets are good as well as rehydration sachets, although check the latter with the Doctor. Take care xxx

[Moon_maiden]

Thats a lot to go through, so sorry you’ve had such a bad experience. You can go to another hospital for a specialist and the hospital you are in can also arrange this. Have a look online and speak to the ward manager. If you do want to move, tell them you’d like a second opinion from whoever you’ve found. Can’t guarantee it’ll work, but I know it can be done. It may work that they’ll get the specialist involved where you are. You can also request a visit to you in the ward by PALS. Also look at the hospital rating on the CQC website. The NICE guidelines will show that with stage 4 you should only be seen by a specialist.

I think you could be in the best place to get real answers. You can show them the info as to what they need to do 🙂

Let us know how it goes 🙂

[TennisAM]

So sorry you've experienced this, agree with the below, for stage 4 you should only be seen by a specialist. Worth asking PALS to come see you in the ward. You can call them about it.

I have to take norethisterone to bring on my periods as I get all the symptoms of a period but don't bleed. I've had headaches and very low mood from it. From what I've read on the leaflet norethisterone could have caused your symptoms. I hope it's not a stroke and they can help you soon

Hope you see a specialist soon and find the answers you need.

[Missy100]

Hi,

Norethisterone has a lot of risks that are not always highlighted. The guidance on taking it can be viewed here:

medicines.org.uk/emc/files/...

Alternatively you can do a google search for it. Migraines, kidney issues and blood clots (which can lead to stroke) are all among the things listed in the possible complications.

These are all things that any A&E and GP should be aware of.

As for Gynaecology care, I feel your pain. I am years in trying to get proper care and my last contact was, following a PALS complaint, a telephone conversation with a head consultant at a BGSE centre, promising next contact in November to set up for care. I'm still waiting as a result of Covid, as are many others.

In the meantime I would push for better care via your GP in concern with the recent additional health issues which sound to be in connection with the progesterone prescription, and if you don't have any success don't hesitate to complain. This isn't a small thing or something to be brushed aside.

I wish you the best of luck in being heard and receiving the care you deserve.

[Jasmin24 in reply to Missy100]

Thank you Missy100Apologies for the late reply.

I spent also 3 weeks in hospital. I'm going to concentrate on my recovery first.

I have asked my GP now to refer to another specialist clinic.

Like I said I will concentrate on recovery first and I will pursue the matter further.

Regardless of covid, I still feel the lack of services is not helping people who need help.

I lost my job last year, and only been in the new job 4 months. They have been kind to me, but my recovery might take longer then I thought.

I appreciate your kind advice. 😊

[LoneWolf91]

Hi I've been on norethisterone since november 12th 2019 straight now and due to end them at end of this month tbh I've never had this issue but it is scaring me so much to come of the norethisterone as I dont know what to expect as I've never taken them for this long before my gyne told me to stay on them till OP date which hasn't happened yet but I've been wanting some advice or reassurance from someone that's been on the tablets for longer or so

[Jasmin24 in reply to LoneWolf91]

LoneWolf91I suppose everyone reacts differently. The drug clearly did not agree with me. I was only on it a short period of time, as you have been on it alot longer.

My concern is my consultant, GP have not acknowledged my constant pleads for help and guidance, which I will be dealing with once I fully recover.

If you are unsure of what you are taking, please continue to pester your consultant and GP.