Refusing to continue Zoladex, but offering no other suggestions.

[Spangalow07]

Hi Ladies,

I am currently on month 4/6 of Zoladex injections to treat my severe endometriosis. Had a telephone update (with the gynae secretary may I add) and they are refusing to allow the injections to continue past 6 months but cannot offer me anything else in its place. I should have an outpatient appointment in June.

Couple of questions from me:

Has anyone had it for longer than six months, and how did you get it signed off?

Has anyone been on it for six months, and how long did it take for your periods to come back?

I have just been able to take a promotion at work after previously being on a PIP plan for my sick leave, and I really feel like I have my quality of life back. I am so scared that this is going to be taken away from me again, and I really do not know how I will cope. It got to the point where I could not even walk my dog alone as I didn't know how far I would make it, and I could hardly socialise outside of my own home. I cannot go back to that again, but they are saying the waiting list for operating is over 12 months and there are no other options. My nurse who is administering the drug tells me I can have it for longer, and has emailed the consultant, but any further information would be so helpful. Also, I enquired privately and they are happy to continue the treatment I am currently on, but at the cost of £240 a month. If privately they will continue it, surely my consultant can sign it off too?

NB - I have tried all contraception options before and had adverse side effects/found it to have no effect at all on my endometriosis so I will not be going back on any of them again.

Sorry for the ramble, really working myself up over it all.

thanks xx

[Annimay43]

Hiya. I was put on the zoledex back in 2019 and they only gave me 6 months. Then they tried pill which didnt agree with me so I begged to be on the injections again. These lasted 2 years due to covid and I finally had hysterectomy in Feb. The limit is max 4\7 years to be allowed on Zoledex as they affect the bones thats why they wont give them longer. If you are in severe pain and where previously with Gp who done referral ask them try push surgery for u. If nurse happy to continue giving them then dont see reason why cant stay on till get surgery. Thankfully my periods didnt come back as was due injection just before surgery. Hope u get sorted x

[Lindle in reply to Annimay43]

Hi - please could you let me have the written evidence that zoladex can be given 4/7 years as I'm not aware of this.

[Annimay43 in reply to Lindle]

Hi I dont have written evidence im only going by what my GP told me is the limit as can cause oesteoporosis and other problems with bones

[Lusciouslips in reply to Annimay43]

Iv never heard the max being 4/7years because of the risks. They will allow or are allowing me 1year, however they aren't happy with this, so I have to have regular MRI.

[Gemini201]

Cancer patients have it for a lot longer. My friend will need it for a year and a half in total so they can do it if necessary. I’m waiting on a hysterectomy and in my third month of zoladex and they’ve said MINIMUM six months but likely longer due to waiting list. X

[MillsM199047]

I was on it for 3 months and refused to have longer xx

[Hidden]

I’m so sorry you’re struggling. Zoladex and the other GnRH hormone producers state that no more than 2x6 month treatments should be administer in a patients lifetime due to the potential for quite damaging long term side effects. If you’re told you can have more…. Question it because the companies themselves recommend that you don’t. Some studies have been done on this (you’ll find I’m on PubMed). Xx

[Pinkmice]

Hi Life with endo is an never ending trip of pain ,stress - if you can afford the injections

until surgery. But you will need time to heal.

Had the big op year,s ago but still suffer - had those injections to aid monthly cycle

left me ill , un-able to produce my dreams of motherhood.

Now year s later no job - so take care think before any major ops

Take Care,Big Hug

[lekeendo]

Hi you need to fight back and get others involved make everyone aware because this is a cost saving activity for them. Zoladex is very expensive and this is why they do not offer it. Zoladex works and should be given until menopause. Fight back.

[Lusciouslips in reply to lekeendo]

They don't like to give zoladex for long periods if they can help it because it can cause osteoporosis so staying on it until you go through menopause will give you even more damage. I looked after a lady with osteoporosis it's definitely something to avoid if you can help it.

[Katielaa]

Wow how frustrating, my NHS consultant wants to keep me on it until ‘presumed menopause’. I’m49 with a family history of osteoporosis and there is no way I’m staying on it long term. That’s why I’m going private for a full hysterectomy in May. Never understood how different advice can be x

[Lusciouslips]

I have been on zoladex longer than 6months and still on it. They don't like me on it because it can cause osteoporosis, however they gave me an MRI to see how my bones were and it came back that my bones were ok and so I carried it on. In the past when I had zoladex then came off it I think it took 3month for my period to come back, but I could be wrong. Also when my period came back it was a lot worse than before. But that doesn't mean it be the same for you. That's just my experience.

[Em_46]

HiBeen on zoladex since December 2019 as per the consultants recommendation for my endometriosis, I have stage 4 along with cysts on my ovaries. Due to have a hysterectomy but unfortunately covid has delayed that somewhat.

Consultant seems happy for me to stay on the injections for the time being and because I'm having a two part operation he has said that I can remain on them afterwards as well instead of a coil being fitted as he didn't think that would work for me. I was told by the nurse giving me the injection that I could only be on them for a maximum of three years but the consultant says I can be on them for longer.

Hope this helps?

Em

[Lusciouslips]

We can't win. We take medication to help is then we get taken off them because it creates irreversible side effects. It's never ending

[Minnie153]

HiNormally when on and if the treatments that put you in a medical menopause you’re given hormonal ad-back therapy to help with the side effects the medication causes - all menopausal symptoms including to address any potential loss of bone density. The drug may well only be licensed for 6 month blocks when being used to treat endometriosis. Surgeons may decide to use it off licence for individual cases, such as women close in age to natural menopause who are awaiting hysterectomy and for other reasons. Ideally you need to discuss this with the consultant as although the nurse is happy to administer it’s the Dr who writes the prescription.

Additionally, I’ve had 4 courses of Zoladex/prostap in my 30+ years of having endo. 3 with very good effect, the last not supposed much but this was a bridge to surgery as I was awaiting hysterectomy. All completed now, thankfully but I waited over 2 years for this surgery.

Good luck

[csytasista]

Hi - I have just finished 12 months on Zoladex. They would only give me 6 months without HRT add-back so I was on HRT from month 5. The zoladex was most effective for my endo on it's own but the HRT did help the menopausal symptoms and I still had a lot of relief in this second 6 months. My last injection was 5 weeks ago now and I am suffering with much of my previous pain already and had nausea today for the first time in a year I think I am ovulating now, or trying too. I will have to see how long it takes for a bleed but I expect in a couple of weeks. Hope my experience helps, as far as I know the 6months is a max without HRT but there are probably exceptions to that. Seems pretty standard for them to give it a year if HRT can be tolerated. I'm 39. FYI: I was given evoril conti first as HRT which I couldn't tolerate, once switched to tibolone and settled down it was pretty ok really apart from mini-flares a couple of days before each injection.Take care x

[Laura_anne_]

Hi, the max length of treatment is 6 months, and it cannot be repeated, see the BNF (British national formulary) for more info, but it's the legal and manufacture guidelines for all prescribable drugs

[Laura_anne_ in reply to Laura_anne_]

bnf.nice.org.uk/drug/gosere...

[EndoNorthEast]

Hello, I’ve been on prostap for 5 months now. I was also panicking as I’m coming up to 6 months and didn’t want them to stop as I still have no date for surgery to treat my stage 4 DIE endo with bowel involvement. Update with my consultant yesterday and he assured me I can stay on it as long as I am taking my HRT (which I’ve been taking since month 3 on prostap) and have bone scans. My surgery could be up to 2 years wait and I was desperate before I got these injections. I am almost 34 and have tried just about everything else but nothing helps like this does. I really hope you can manage to stay on zoladex but make sure you are also on HRT to protect your bones X

[riddo11]

My gynae was only happy for me to continue long term on zoladex if I went on HRT, which I did x

[EvieJ70]

Hi, I was on prostap for 7 months before starting with dangerously high blood pressure and migraines. My consultant rightly stopped the injections due to this as this has only started whilst on the prostap. I started bleeding just 2 days after my 8th injection was due. This was nearly1 month ago and I have had 1 day of heavy bleeding with clors and on/off bleeding but not kicked in to hiw I was before starting the injections. I have also had to go on BP medication to try and bring my Blood pressure down. I was due to have my full abdominal hysterectomy on Tuesday but after avoiding covid for 2 years tested positive and now surgery has had to be postponed for 7 weeks post covid infection. I can only hope that my operation is completed before the nightmare begins again.