Hey girls, was diagnosised with endo 2-3 years ago after 8-9 years misdiagnosis.

I am currently on zoladex injections monthy and have the coil insitu.

I finish my 6 month course of zoladex in June.... Does anyone know what the next course of treatment is? The injections have worked really well for me no hospital admissions and pain is 80% improved. But i am apprehensive to being of the injections.

Anyone had a similar experience??

15 Replies

  • Hi there. I had zoladex for 2 years. Apparently so the consultant told me as long as you have add back therapy (hrt) it's safe to stay on this for 2 years. Maybe a further course would help you? It certainly helped me I went from badly anaemia and jobless hardly going out to getting life back. Good luck hope you can. 

  • Dont know if they will offer me more than 6 months because i also have coeliac disease so im high risk for bone problems

  • Hi, the problem with zolodex is that it will always only be a temporary measure, I fought it should only be taken for 6 months, but I've heard alot of ladies say they had it for longer, the gold standard of treatment is thorough excision in a bsge centre, with a specialist, so if you are not under a bsge centre, ask your gp for a refferal, x

  • Do i have to ask my GP or can i not go through my gyne consultant at the hospital?

  • Hi . I was on zola dexterity for 7.5 years with Hrt . I know of ladies that have been on it for 15yrs with 4weekly injections  . I was even asked if I wanted to self inject. I loved it and since coming off have had numerous issue with bleeding. It has been incredibly heavy and clotting. However I have been on the mini pill for last 8 months and it has settled right down to what I feel would be classed as normal period. I only came off zoladex as I was unfortunately one of the ones that has osteoporosis.  Although it is believed that I had it from juvenile.  As it runs in famiky and we never knew. If not I would definitely still be having it. Talk to your consultant and take time to ask all the questions about treatment going forward  but if it works for you maybe see about staying  on a little longer. I'm now 46 and they think I am becoming menopausal which is a giggle in its self .... I wish you all the very very best hun zxxx

  • Hi. Similar to yourself I took Zoladex and it was such a relief. When I was due my next implant my pains were coming back. It was fantastic to be obtaining relief. I was 38 when I had my first lap and appendicectomy (just in case) and they inserted the coil at the same time. At the time I was told they only found one 'old' spot of endo during the lap but it was enough to confirm that it was in my system. Anyway, the coil reduced my flow a little but the pains were just as bad as my periods didn't stop. Another gynae  (I never saw the same one) checked my notes and said my left ovary was covered with endo and that as I was suffering so much they'd offer 6 months of Zoladex with a view to having a hysterectomy if it was successful in reducing my symptoms. At 40 I was lucky enough to have had 2 children and I was happy, although apprehensive, to have a hyst. Apprehensive because I did heaps of research and found that the op isn't a cure for endo. I was positive for my situation though as, like you, Zoladex had been wonderful for me. They let me have a further 3 months of Zol then I had a total hysterectomy and double oopherectomy. They took everything! It took a good few months to fully recover from the op but I feel great. Still have bloating and lethargy for a couple of days here and there with low level pain but it's made a huge difference to my life. A change of HRT 14 months post op helped settle some nastier pains I'd been having. You don't mention your age and whether you have or would like children but I hope my story has helped you decide your next step. Excision wouldn't have worked for my endo because I was pretty much covered with microscopic endo. Turns out I had fibroids too which hadn't been picked up with scans. Very best wishes to you x

  • I am 26 and very keen to have children when i own my own house which should be the case in the next year.

    So hysterectomy is not an option for me at present.

    Did u have any symptoms with the fibroids??

  • I was advised that Zoladex real shrinks down the endo and it could be that one of the pills could then keep it shrunk. I truly hope this is the case for you and I hope you conceive quickly. I'm unaware of what symptoms were endo and what were fibroids, sorry I can't help with this xx

  • First of all I very much hope we are not recommending women in the UK to take prostap for 15 years! I find it really worrying that Endo UK don't monitor comments that may be taken as advice. There is NHS protocol to be followed otherwise what is the point of having it? The gold standard for treatment of endo in the UK is excision and not long term use of any sort of hormone medications. These should only ever be used temporarily. If GnRH agonists significantly reduce pain then it is clear that the pain is being caused by oestrogen stimulation and this should be then used to guide subsequent treatment not replace it indefinitely. Kate, click on my name and have a look at my post on the treatment pathway. If you are in England I suggest you request referral to a specialist centre. x

  • How would i go about getting a specialist referal?

    I am under a gyne consultant at my local hospital.

    I am a nurse and i no that any PCT are reluctant making referals to specialist units due to cost, i have a follow up in June post 6 months of  Zoladex, so will be interested what plan they make for me.

    But need all the info possible because as they say information is powerful. 

  • Just had a look at the gsbe hospitals and my local hospital is actullay registered there so thats a good start lol

  • make sure its with the named specialist because i was being treated at a bsge listed hospital but didnt know that the general gynae dept were nothing to do with it. hence ive had to have 2 laps done just to get diagnosis. x x

  • Hi,

    I had dipherelline treament for 6 months, which is the same with zoladex. After this I've been told to make a kid, which is naturally impossible. So I had to start another treament and I am very happy with it. The pills's name is Visanne, but unfortunately you don't find in every country. Try to speak with your doctor. It really helps me. I have 1year and a half with no pain at all. They are approved in USA, Turkey and Greece. Take care!


  • Hiya Kate, I'm 45, just recently, at last(!), diagnised with stage IV Endo with RV & Ureter involvement + extensive Adeno + uterine / endometrial ?polyps... and I've just had my 7th monthly Prostap injection. There is an evidence base that indicates that up to 2 years is fine as long as you are taking 'add-back' hormones, which I have been doing since my 3rd injection. I am taking bio-identicals: Testogel daily, Estradiol pump daily & Progesterone pessary (Crinone) every 4 days at night. I have recently had by Bone Mass Density assessed through the formal scanning procedure and I am a little better than average compared with other women my age. However, my GP has added Calceos (Calcium & Vit D3) as an additional protective measure. I imagine risk of mass bine density loss / Osteoporosis is your worry? It can be easily managed with 'add-back', Calceos & a bine scan every 12 months. My using Proastap is a temporary alternative to surgey (hysterectomy and extensive excision work including possible small bowel re-section with hopefully temporary ileostomy) as I have just started a new job & I donlt want to take any time off for surgey in the first 12 months. I have a fantastic Consultant Gynae Surgeon & Gen Med Surgeon + team looking after me, & my GP has been absolutely amazing. I am very fortunate. The Prostap has made an incredible difference to my life... no more pain :-)

  • I had a 6 month course of zoledex and it worked brilliantly for me. My periods and pain stopped after the first month and neither returned for 5 months after the course finished. I was told I had to have at least a 6 month break before I could start having the injections again which was apparently standard practice? But I am also high risk of bone issues due to family history of oesteoporosis so was advised it would be better to wait longer. I never had a second course in the end (started IVF etc. ) 

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