Endo and zoladex treatment: Has anyone else... - Endometriosis UK

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Endo and zoladex treatment

emmaibiza profile image
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Has anyone else had zoladex for endometriosis?? Im really suffering after my lap last may and pain seems worse than ever, I cant take the pill as im allergic so started zoladex 2 weeks ago and hrt I started to bleed 5 days ago and the pain is worse than ever and my period is more heavy than normal, anyone else experienced the same and is this normal?? I had to stop hrt as was making me really dizzy. I never ever cry but cant seem to stop at the min. Just need to know if people experienced the same as me as im not sure I can carry on with the zoladex if it doesnt get better, thought it stopped periods and pain?? And why am I getting upset and angry all the time?? Just feel so unlike myself and getting upset and angry over things that would never usually bother me. Please help em

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emmaibiza profile image
emmaibiza
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Impatient profile image
Impatient

Yes your zoladex exprience is sadly all too familiar for so many of us. Please use the search box in the green bar at the top of the page type in

GnRH, Zoladex, Prostap, Decapeptyl, Lupron (all terms for the same family of drugs) and you will soon see just how many don't get on with these super-strong drugs.

If you have fibroids and are shrinking them awaiting surgery - then that's something to keep in mind.

If you are only on it for endo - then stop and get back to managing your period pains as you have managed them all this time -hotwater bottles, tens machines, pain killers etc

All of which you take as and when you need them, and you control things.

zoladex is only prescribed for endo to improve your quality of life for a while - that is the aim. It doesn't cure or kill lendo - just puts it to sleep for a while. It's still there it will still reactivate after you stop the drug. Sois there any point battling the side effects for nothing?

All your descibed side effects are known and common and are listed on the patient information leaflet which you rarely get given if ever. It is on a PDF format file online if you google it.

lupronvictimshub.com/index....

lawyersandsettlements.com/a...

Are just two of many websites where ladies (and men) report their experiences of these GnRH drugs.

And if you are hanving problems at home because of the moods, angry temper, harsh words etc, please tell family it is not the real you, it is definitely the drugs causing it, you cannot stop yourself from over reacting in an aggressive way other than trying to keep out of the war zone by taking yourself to bed.

And once you come off the drugs - a few "I'm sorry " cards written to those who have been victim of your out of character behaviour will go a long way to healing ny hurt feelings.

I was just the same. My poor mum bless her, got the brunt of my slamming doors and frustration and sharp tongue. Thankfully having known me for such a long time she knew it was not the realme but the drugs and she made allowances but it still was not a pleasant household situation.

The great news is your mean moods will lift as soon as the drug is running out, which is about 2-3 weeks after your last implant was due if you had had it. Most of the side effects diminish in week or two. Somemay last longer but the moodiness thing for me was one of the quicker ones to get sorted out.

Makes me realise just how much hormones play a part in how people control their anger and when i see on the news people with real anger management issues - Idon't blame them anymore like Iused to do. I feel so sorry for them tht it could simply be messed up hormones and there is no amount of will power or knowing the right way to behave that will override the hormone reaction.

Anyhow - there's plenty on this website full of experiences to browse through. And lots foryou to think about as to whether youdo got for one more month of it or call it a day.

My advice is quit before it gets even worse or before you sustain any long term side effects.

Hugs to you. It's a ghastly experience for many of us.

Turner23 profile image
Turner23

I had the zoledex for 9 months last year I felt just like u for the first 2 months but after the 3 rd time I started to feel better with pain after that the only issue I had was my confidence about my body as it did make me bloat and felt frumpy and I lost my sex drive so the doctor told a gel i could buy but I do agree it dose make u angry then emotional he did prescribe me a medication to control that can't think what it was called. Weird thing is when I came off I was human for 2 months no pain no side effect then bam I fell back to normal and just had my second lap done on Friday this time it spread to my stomach :( I do think zoledex helped me with the pain but it works for some and not for others xxx

emmaibiza profile image
emmaibiza

Thanks so much for the replies. The info is really useful.

I have read that a few people have felt better from zoladex after the first month or two. I feel like I'm running out of ideas. I had my lap last may and had endo removed, I ended up being off work for 7 weeks after my lap in agony and my wounds got infected and bleeding heavy for 3 weeks. I am allergic to all contraceptive pills and most medicines, I come out covered in a rash from head to toe, even from pain killers like Co codamol, Co dydramol and most antibiotics. The only pain killer I can take when the pain is so bad is tramadol but this makes me feel high as a kite, unable to sleep or eat. I'm already a little under weight and lost nearly half a stone again this week as I've been on tramadol for the pain and unable to eat. I did get some anti sickness tablets from the doc but I still have no appetite.

So really I do not want another lap as I don't feel this has made me better at all. I had the implant put in but I just bleed constant. So apart from the zoladex treatment I really don't know what other options I have? I just feel so fed up of being ill all the time, tired, moody from zoladex etc. It's a nightmare. I'm thinking I will try the zoladex for one more month then I'm thinking of looking into Chinese medicine, has anyone tried this?

I'm 29 and have no children, I've been with my partner for 8 years and he is very understanding, I have spoke recently to him about children and if we do want a family (if we can have a baby) and said we need to start thinking about it, I feel a hysterectomy is the only way I'll ever feel better.

Turner what treatment are you having now after your lap if any hun?

Hope you feel better soon hun it's nice to talk to people going through the same

Turner23 profile image
Turner23 in reply to emmaibiza

I too am allergic to most pain killers I just had another reaction to co codomol making me hillusinate, iv tried other safe sex methods pills injections but I bleed constantly, at present having shit time had my lap do e Friday stopped taking pain killers Monday as got a reaction but at present still presenting a very fast heart rate body trembling and feeling faint and lefargic hospital recon it had nothing to do with my op how the hell would they no dr can't see me til next week yes iv been adviced Togo a and e but I really don't feel well enought to sit in weighting room for there lovely 7 hour waiting time yes in being stubborn but don't help I'm at home in my own trying to look after my 2 children also I'm 28 I'm desperate for another baby so I'm weighting to go bk to my constant after iv recoverd to discuss this but when I left hospital they did say to me pregnancy is the best thing for endro. I think if I can have another baby I will defo have a histromectmy after I'm very grateful having my boys but I really would love another one hopefull a girl but I just don't no how much more I can cope feeling shit

emmaibiza profile image
emmaibiza

Oh hun that's awful I really feel for you and know how you feel. I too was advises to go a&e 2 days ago by friends who had come round and seen how much pain I'm in but I literally don't have the energy to sit waiting in a&e for hours to be told to just rest at home etc. I've been in bed for 6 days now and just absolutely fed up, feel like I'm never gonna feel well and I keep trying to manage without the tramadol but can't so I feel so spaced out and not with it but it's better than the pain. Have you got a walk in centre near you? The wait is not usually as bad as a&e. Sounds like you have a bad infection from the op hun with them symptoms and you need to see someone ASAP if it is that. I can't believe the hospital are saying it is not from the op that you feel as you do, when I had my lap last may the discharge letter states all of the things you are experiencing as infection and you need to see someone ASAP. Try the walk in centre or ring nhs direct hun. Big hugs and I hope you start feeling better soon. Let me know how u get on x

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