Zoladex turmoil...should I quit my treatment?

[Cooka]

Hi ladies any advise please? I'm at wits end. I'm half way through my zoladex program for moderate endo (have had 3 jabs, 3 to go) but I don't know if I can handle any more of this. The muscle and bone pain has started with also crazy angry horrid moods. I have stabbing pains in my overies which I don't recall even having this bad before my lap and zoladex treatment! This has been for about 3-4 weeks now and my ad-back hrt tabs(premarin) no longer stop the flushes. My gyno now says to take twice the amount of hrt to help with my side effects! And that this pain will sort itself out.

I feel rubbish and i thought the point of being on this and suffering the side effects was that it stops the pain? I'm worried that I'm doing more harm than good.

Has anyone out there stopped treatment half way through? And if so what happened after? Any advice?

[Impatient]

Yes you can quit any time. It's not about stopping half way through, whether 1 month or 6 months makes no difference to the endo status at all.

It is simply pausing the situation, but if you feel ghastly which I am sorry to say many of us have been through the exact same horrors, then your quality of life is more important and you should quit. The only down side to quitting is that overall your endo pains may return a month or two earlier than they would have done if you hadn't quit.....well worth it when you compare your day to day existance if you did stay on it for those 2 months.

Having double dose HRT is putting back the same hormones that that drug is stopping your body producing to stop the endo being active.

Therefore it makes more sense rather than risk another month of this (and possibly worse,) even with double HRT, that you do stop and let the drug begin to wear off.

The wearing off takes time too. It certainly doesn't happen over night.

Can take a few weeks for the hot flushes and pains to ease off and even longer for the ovaries to get to work again.

The best bit is that time in between the worst of the side effects going and you are getting back to normal again, and the ovaries then restarting at some point. The longer the wait in between, the better, as far as endo pain is concerned. My periods came back so soon i was very miffed about that.

It really doesn't matter whether your ovaries are shut down for a couple of months or 2 years, it is NOT a case of the longer they are shut down the longer they will take to reawaken again. It doesn't work like that...unfortunately.

My gynae advised me 4 months..till the mirena kicked in.

I barely made it to the 4th implant. Each week my side effects list got stronger and longer with so many happening simultaneously I was utterly exhausted and miserable and in so much different pain and so much discomfort.

I am really glad i stopped at that 4th one. In hind sight i would NOT go back on the stuff again if my life depended on it. It really wasn't worth it. I should have quit after the 2nd one.

The drugs are 24/7 no escape.

With pain killers you control the dosage as and when you need it and that to my way of thinking is a much better way to manage the endo pains.

Having strong enough pain relief when you need it is a much better option.

It is not the doctors decision, and it is not like antibiotics where you are advised to complete the course otherwise you don't kill off the bugs and they become resistant.

This is a very different type of artificial drug.

Stopping at anytime is your decision alone. No one will berate you for giving it your best shot and deciding enough is enough. They are super powerful drugs and yes they might be helping the endo by pausing it for a while, but as you say, probably doing the rest of you a lot more harm than good and is that a price worth paying...hmm i would say no it isn't.

If you do want to give it the one more last month chance with double dose HRT and you think you could just about cope with 1 more month of feeling like you do now, then that is up to you and your family too (as they are also crucial in having to pick up the slack when you are really suffering) . If you want to quit now, then in a couple of weeks after the next implant would have been due if you had had it, you should notice a real improvement and with luck should be still period free till after x-mas. The average wait is 5 months to restarting your periods again, regardless of how many implants you have manage to clock up.

You have my every sympathy. I reckon if the doctors took this drug for themselves they wouldn't be too keen to promote it to their patients. Reading the side effects list is one thing, having to live with them is quite another. It's horrid.

Hugs to you, and QUIT if you want to. Don't be bullied in to staying on the drug any longer than you have to, once you know you and it are not getting along.

[Cooka in reply to Impatient]

Hi impatient, a few months ago you were giving me some advice on zoladex and when the side effects should start to wear off after stopping the injections. Did your moods pick up when you stopped the injections? if so how long did it take to feel happier like yourself again? Or did your moods go haywire when your hormones started flooding back in? I'm feeling very low today and have had anxiety and palpitations. 8 days left to go on this injection until it "wears off" Your advice is much appreciated x

[borderali]

I stayed on it for the full six months and I can honestly say after my first and second I felt like little old me again, then came the back ache, hot flushes, firework feeling in my belly, and a big fat belly like I'm pregnant! The last two months the pain has really got to me and my partner its just miserable,now I just want the hysterectomy. X

[curly1980]

awww yes i can really sympathise here,,, i managed 2 jabs and couldnt take anymore, i actually went to the hossi when i was due for the 3rd one to tell them i didnt want anymore i just want a laproscopy,, but the doc talked me into having them for another 3 mnths (was only supposed to be 3 months altogeter then they said they would do a laproscopy) so he said i can have hrt too,,

so i am waiting in the corridor after seeing the consultant ,, the nurse is taking ages to come and do the injection,, so my mind was whirling,, and i dont know what came over me, but i just broke down there in the corridor! , couldnt believe it as its so not like me at all,,, told the nurse i dont want it and she was great and told me to go and have a think and come back next week if i wanted it,, been thinking all week but have decided not to go through this horror anymore.

I am like a different person snapping at my kids for no reason,, crying and just feeling really unwell, along with the insomnia which doesnt help the moods,, its the worst thing i have ever been through in my like ! ( i also suffer with depression which is under control, and i have had cancer so that just tells you how bad it is)

My pain is starting to come back already and i still am having the side effects from the evil drug,, had my last jab 5 weeks ago,, so hopefully will start to wear off soon,,, i really would prefer the pain anyday,, as impatient has said, you are in control of your own pain and body with painkillers

so i would say if you are feeling that horrendous then i would not continue,,, they really do need to think a bit more before just giving this medicine out to people, i mean they knew i live with depression and i take anti deppressants so surely any thing that is going to make someone feel like tis will make the deppression worse,,, i am going to tell that to the consultant in 2 weeks when i go back,, i have to try and make him give me a laproscop now,,, he is probs gonna be pissed off that i have stopped, but im at the point now where i dont care, and i am always a bit scared to speak to consultants cos i dont like goin in telling them what to do, but im afraid i will have to!!

gosh sorry for that ! didnt realise how long i went on for!! xxxxxxxx

[Cooka]

Thanks so much for your advice ladies. It's nice to know I'm not going mad and others understand what i'm going through. My worry about giving up the 6 month treatment early is that they way I understood this horrid treatment works is that the endo and fibroids will sort of dissolve or diminish when it is starved from the estrogen for 6 months. So if I quit 3 months early will the endo still be there and will my 3 months of suffering be all for nothing? The reason I was put on this was for urethral pain and spotting more than period pain. This treatment has stopped my urethral pain but boy I feel like I'm getting my period every single day now! I have pain in my pelvis and sharp stabbing pains in my ovary area that really worry me. They are stronger than I had before this treatment. I feel like has this created more problems??

Another thing my gyno said was that even tho it seems weird that I'm taking ad-back hrt which is estrogen.. it will not effect the zoladex action as the zolly works on a central system which affects the endo and the ad-back hrt doesn't. huh??

I too suffered anxiety and panic attacks when I was put on this drug and now I feel really depressed. It has cost me my relationship as I was in a new relationship when I was put on the zolly and he has ended it. I dont blame him. As I've been a misery guts and feel unsexy and disgusting. So being on this, being in pain and having a broken heart is all a bit much!

[Juleyanne]

Years ago I tried Zoladex for endo and like everyone else found it heavy going. I did not see any relief in my symptoms which the gyne told me mean't it wasn't now endo causing my symptoms but probably adhesions. If Zoladex works it's endo, if not it is likely adhesions. Zoladex does not work for adhesions!

[karrijon]

Hi, I am only one month into my treatment and I am not having the second one. I think you've done amazingly well to get this far but as far as I can see it is just not worth it. This stuff is horrendous, if it is making you feel that bad just stop!! And good luck xx