Zoladex 3 monthly injections plus taking livial but endo has got worse, anyone experienced anything like this?

I was finally diagnosed with endo in pouch of douglas plus adhesions on large bowel & abdominal wall, had suffered for 12 years before diagnosis. Have been on monthly Zoladex no hrt before I was diagnosed but after my consultant being a nightmare & not listening to me I finally got him to do another lap (I've had 4 now) I'm so glad I pushed it cos this was when he found the endo as he actually did the op himself instead of it being passed onto a general surgeon.

I have been on 3 monthly injections with livial for nearly 11 months now & I thought this was supposed to stop the endo from spreading. Well I went for an updated ultra sound last week & they found an endometrioma on my right ovary, to me it explains why I've been in so much pain when it was supposed to be getting easier. I go back to see my consultant in may.

Was just wondering if any of you had had anything like this happen whilst being on zoladex?

vic

:-)

10 Replies

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  • Hi Vic

    I have had surgery for endo twice and have have been on zoladex now for 8 months generally going well however last two months have had horrendous pain at times and loads of urine infections.I wondered if my endo has returned as well .I was also told the zoladex would stop endo from producing anymore I am not convinced now!i have a gyaeni appointment next month so we shall see.like you I thought zoladex would be my saving grace.Its tough.Hope you get some answers soon from clinic.

    Bxx

  • Hi B, my pain came back aswell I kept saying to my other half that I was sure the endo had spread even though I was told it wouldnt, but lets face it we know our bodies & I wasnt suprised when the scan showed it had spread to my ovary. Just out of interest have you had any bleeding/spotting on Zoladex? because although my bad bleeding had stopped but still getting low bleeds & spotting all the time. Endo has completely taken over my life now & I hardly leave the house due to the pain, I just wish they would do a hysterectomy as I dont want anymore children, just so I can hopefully get my life back to some kind of normality.

    I hope your app with gynae goes well & you get the answers you want, try & get them to do another scan if the dont listen as you know your body better than they do :-) Keep me updated.

    vic x

  • hello ladies, i haven't been diagnosed yet but was put on Zoladex for 6 months. had my last injection 1 week ago, it has helped pain level now 2/3 instead of 8/9 but my doctor thinks when i go back to see consultant they are not going to think my pain has been gynae related because the pain level not gone down sufficiently, i think it has from going from 8/9 to 2/3 is fantastic. i am worried now i am going to be passed to other department bowel/bladder possibly. what do you ladies think?

  • Personally I couldn't get on with the three monthly injections after about two months the pain started to creep back (so could only assume the endo too) so I just stuck to monthly ones and even then made sure I had them every four weeks instead of calendar months to ensure it was always in my system properly. Maybe worth a try it worked for me. Take care good luck with your appointment. x

  • I have had the injections with and without livial. It didn't help me, my symptoms got worse. But the main reason that having it with hrt does not benefit is because livial contains tibolone which is the artificial form of oestrogen. Endo is fed by oestrogen hence more grown.

  • Hi

    Just a quick note! I had Vivial with Zoladex and I had the worst bleeding and pain ever. I have never taken Livial since.

    I hope you get this all sorted.

    Best wishes

    x

  • I had 4 months on zoladex which was fantastic but then started livial and pain came back. Was on zoladex for 12mths and just got 1st period in 18mths. I have had battle with gynae as they are adamant that cant be endo if zoladex doesnt stop pain. Ive got to point now where im just living with pain and see what happens. Got gynae appt tmrw so watch this space. Dont let them tell you its not endo request lap asap.

    Good luck.

    Liz xx

  • How did your appointment go livibean? My Gynae has put me on Zoladex and Livial to find out if it rids me of my lower back pain which would then confirm it is Endo related. xx

  • Zoladex doesn't always keep the Endo at bay, or not completely, livial has estrogen in it even if its a tiny amount its enough to keep the Endo thriving. I've just copied this post from a group (im a bout to post) thought its worth a read to those of u that aren't very familia with zoladex etc.

    - some interesting information regarding zoladex (prob true for the others too) and helps support what others on here have said about zoladex not always working when they have had prolonged courses or repeated courses or zoladex. It says that in 10% of females isolated elevations of serum oestradiol occurred during clinical trials and that this hormone alongside FSH and LH might not be suppressed to follicular phase in certain individuals. It doesn't mention a typical profile of a person that this might be the case but it might be worth mentioning this to gynaes who say that it isn't less effective over time or does work for everybody. My original gynae told me that because prostap didn't work it wasn't a gynae problem and this explains it. Not sure why zoladex would work though xxx

  • Hi my 3rd injection is on the 11th july, but I've still got the pains in my left side, I go in to hospital on 23rd july to get mirena coil fitted and a cyst drained but I don't know if this will be a job??? Anyone got some advice?? Also I thought the Zoladex injection would have stopped the pain and the brown staining, you see that's my problem I have staining all the time and it can be as heavy as a period, anyone like this???????????////

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