Hi,
I have just had another appointment with my gynaecologist. He has suggested that to help treat my endometriosis they want to induce an artificial menopause with an injection every 28 days and then take HRT as well. I'm 24 and Im really worried about the outcome of this treatment. Has anyone else ever had this type of treatment that can offer some advice?! Thanks in advance 
Hi,
Cant really give you any advice but I recently started this treatement - zoladex injections and im the same really worried about it and the long term effects of it im 29 with no kids. Its working really well so far no pain get a slight twinge every now and then but nowhere near as bad as it used to be i havnt had a day of work for other a month!! which is a massive achievement for me.
Just be aware of the side effects, hot flushes headaches and pretty serious depression and mood swings but then again everybody is different and i am not having hrt aswell.
Good luck with it all xx
i was fine on it and it didnt affect me later on in life nothing to worry abt. i cant say it cured me though i had it when i was young im 45 now and just starting my perimenopause x
It can hit everyone is very different ways, certainly not a decision to be taken lightly. You must find out all you can on GnRH drugs, and the specific drug being offered to you. Most of the ladies on this forum will have been through those drugs at some point and they can be a really brutal experience. It varies so much, but it is never without risks not only in the short term but in the longer term too.
So step 1 do your home work
step 2 discuss it with family members as you will need their support and they need to know the side effects that could well happen to you and they are not very nice to go through
step 3 -inform your employer, , make arrangments to have time off as and when you might need it from the side effects, have emergency contacts available to take care of pets or kids if you suddenly find yourself struggling with side effects and unable to care for yourself much less anyone else relying on you.
Use the search box at the top of thise forum and check out the hundreds of posts about Prostap. Lupron, Zoladex, Goserelin, Decapeptyl, GnRH etc.
There is a lot of information and links to the pateint advice leaflets and also plenty of info on the Lupron Victims website (which deals with all the different GnRH drugs as they pretty much all have the same impact on an individual.
The drugs shut down the pituitar gland in th brain. This has a number of consequences one of which is shutting down the ovaries from producing oestrogen which in turn stops the endo from bleeding inside you. It is a temporary pause for most women and the endo will start to bleed again once the drug is worn out of your system.
The drugs are toxic for developing babies, so absolutely essential you use condoms throughout the treatment and for 4 months after the last implant/injection to avoid getting pregnant. BC pills do not work while on the GnRH drugs.
At best it gives you a few months free of endo pain, but any pains caused not by endo but by adhesions for example will not be stopped by the drugs. It is not a pain killer.
At worst, the side effects can make life extremely tough, depressing, painful, exhausting and perhaps also run the risk that your ovaries do not wake up again afterwards and end your chances of having a baby naturally. (that's only a tiny number of women though compared to the vast numbers that get all the other side effects.)
I had it for 4 months (zoladex). I wouldn't touch it again is I was offered multiple millions of pounds. it was for me, the worst medical experience of my life and I have had many many medical issues in the past. But that doesn't mean it will be that bad for you.
It's got to be your decision alone, not the doctors. You decide if it's something you want to try or not. You can always decline it at this point, and leave it to possibly use at a alater stage, perhaps after you have had a family when the risks are not going to be so high for you.
Hi
I think also that they key question you should ask your consultant is what their longer term plan is for treatment - i.e. these drugs are generally recommended for six months only - so ask them what their plans would be after that - if they are not endo experts they probably will not be too clear about what those plans would be. Gynaes are not always endo experts.
An endo consultant would generally recommend excision surgery to remove the endo and by keyhole which is a relatively short and less painful recovery than with open surgery.
If you have this drug treatment and then decide afterwards to go for excision surgery, you would probably need to wait some time to let the drugs get out of your system because the endo would have been temporarily shrunk/masked and the surgeon would not be able to so clearly see where your endo is until it had re-established. Personally I would find an endo specialist surgeon who could perform excision surgery to remove it in the first place.
I know it is a very difficult decision, and a very personal choice - I remember being confused and traumatised when I first had to face making a decision. I just could not see the point in temporary drugs though to be honest and i did not fancy messing with my sensitive hormones. I was also offered removal of ovaries etc but I wanted to find a solution where the endo was removed rather than anything else.
You do need to make sure you have referral to a specialist endo consultant surgeon though. Without being cynical (well maybe just a tad :)) Gynaes tend to be more specialist in fertility and hysterectomies with a bit of endo thrown in. I am sure there are some who err on the side of being endo specialists but it is important to understand what their specialisms are as far as endo is concerned, as the treatment you get offered will be commensurate with their experience which is why it differs so wildly.
I hope you will find peace with whatever decision you will make. For me, I knew I had made the right one for me personally once I started to feel less traumatised about my decision. I know with endo it can feel like choosing between the devil and the deep blue but I found excision surgery to be most helpful.
All very best wishes x
Hi Im currently on a 6 month course of zoladex, im 35 and have had 3 children and been sterlised so having more children isnt an option for me which is the one reason i opted for this, if i was ypunger and hadnt had children i probably wouldnt cnsider it considering there is a slim chance that the ovaries wont wake up again.
im due a hysterectomy at the end of this course which is why im sticking with it, the side effects are not pleasant each time ive had the inection i am more depressed this alst time i couldnt move out of my bedroom and didnt want to face anyone, im bursting into tears for no reason and not jsut little sniffles im talking full on sobs as though the world is ending,
i still have some pain but i also have daughter cysts on my ovaries and serious adhesions from other ops so was expecting this, im still having a period and the pain from the period is worse than ever before.
everyone person is different however for you this might be the right treatment, but you need to clarify with the specialist what they plan on doing post treatment.
good luck xx
Thanks for asking this question, and for the most helpful answers.
I am just about to start on GNRH (not sure which one yet) with add back (HRT), mainly to see if my chronic, constant, lower back pains disappear confirming they are indeed symptoms of my Endo (this has been dismissed). I am 44 (today) and have also had a blood test to see if I am already going through the menopause (I am having flushing, lack of periods etc, but this could well be side effects of my meds), if so, the Gynae's plan will be tipped on it's head because I won't be producing Oestrogen if I am and therefore wouldn't have back pain as an Endo symptom now. (Endo not being fed).
Wishing you pain free days xx
I was diagnosed with endo in Jan, following being rushed into hospital with horrendous pain in my side (turns out I had an ovarian cyst pushing on my kidney and it had caused the kidney to be inflamed. I had a lap and was told I had severe endo, I was put on the GnRH hormone - injection every 28 days for three months. The consultant decided not to give me any HRT, but said if I needed it to let them know. Following this I had what can only be described as THE best three months of my life. No cramps, no back pain, increase in moods, improvement in sex drive, no days off work - it was absolutely amazing. No worrying about periods or any of the symptoms I had come to expect every month. I did suffer with hot flushes - but they were manageable (I think I had a total of 2 in the night over the three months).
At the end of April - I went back in to have a second lap, to drain cysts from my left ovary and remove from my right, I ended up having my left ovary removed as the endo was pretty bad, and the key hole turned into being cut open. I'm back on the injections for another 3 months this time with the add back (livial) and I'm currently doing ok.
As the posts above have said, everyone is different, I've had a good experience with it, others have not. I'm 33 and have no children. I didn't know much about it all, until I did my research, but I'm happy I've had it as everything has been positive.
H
Hi shoppaholic,
I'm sorry I can't offer any advice/ experience but I wanted to let you know you're not alone! I too am about to start this treatment and at 23 myself have some idea of the worries you are facing up to. My partner and I are desperate to have children and I really terrified myself by looking into the treatment online. For all the positive stories you read you will always come across one negative and that will be the one that sticks in your mind! My consultant told me not to research it which I thought was strange as I felt I couldn't make the decision without knowing more about it- however I now get where he was coming from. I have decided to go ahead as this illness is ruining my life- if there's any chance I have to make myself feel better, make it possible to have the job i want etc i will take it! At the stage im at now even if i managed to get pregnant i am certainly not well enough to care for a newborn. if i am one of those unlucky few that have problems afterwards then that's something We will just have to face.
On the positive side we are lucky to have been diagnosed at a young age and to have the knowledge to fight it as soon as we can. I dont really have any other treatment options and I'm certainly not going to let this endo go full steam ahead!
Just wanted to let you know you're not alone as that helps me during my low points. Good luck with making your decision x
Hi, I am currently 2/3 of the way through my first 3monthly injection of decaceptyl (no hrt add back). I'm 38 with 2 children.
After 10+ years of agonising pain, I am having the best 5 weeks I have ever had. The 1st 3 weeks were quite bad (during the flare) but since then my pain has all but disappeared & I have had no pain meds I was at the stage where I would have tried anything.
I do have hot flushes & bad night sweats but I can handle these as long as I'm not in pain, also seem to have a shorter temper & can get tired if I do too much
I'm due to have 1 more injection then back to see my consultant to discuss the next step - she had suggested that if it was working for me then I would continue with the injections with add back therapy, until I am 40+, then hysterectomy.
I can honestly say that this is the best thing to happen to me & i cant remember when i last felt this good! I am happier & nicer to live with!! I can do things with my kids & I have more energy (although I find if I do too much, im wiped out).
I did do a lot of research before I agreed to the injection & if I was younger & didn't have children I may not have tried it.
Good luck to you & I hope that you find something that works for you.
Claire
Hi Claire, just read your post. So glad this has worked for you. I am 41, have 4 children, severe endo, starting decapeptyl next week, am very nervous about it. I pray it will go well for me.
Hi gillrose, I really hope that this works as well for you as it did for me I've had my meds changed to Quleira (pill) to see if this will work as well - so far so good (it will actually save me €400 over the course of 6 months as we have to pay for our meds - full price up to €149 per month - worth changing so long as it works)
Good luck
Claire
Hello Shoppaholic33, I am now on my second zoladex injection. i had it today. I was really shocked when i had it, i was expecting all sorts of side effects but i haven't had much at all. at the beginning of this week i got emotional, had night sweats and hot flashes but that was because i was due my second injection.before that i had no side effects at all. all womb pain was gone. i have back pain due to endo and the back pain was giving me other pains which have now all gone. even the back pain has calmed down. I am easier to live with, can do things with my family, can even enjoy sex again. I'm on this injection for 3 months and my consultant has told me if it works then i can have a hysterectomy. Now i can have this as i've had my children, and because my sterilisation is irreversible there is now point me having my womb anymore. I would suggest researching the meds as this will give you more insite.i did my research but like others here, i just wanted to be normal and of the pain meds that were horrible.
good luck and keep us all updated. xxxx
Well had my first zoladex injection today, anxious as to what it will bring. It feels quite sore where they injected the pellet in my stomach but you can barely see a pin prick...feel like a bit of a wimp. Lets hope this works! Thanks for all of your advice above guys x
Hi, I'm 42. I'm also a rarity. I was diagnosed with Endo within 6 months of feeling my first pain and this was due to a CA125 marker and suspected cancer. It wasn't it was Endo (which can trigger a false Cancer blood test) and within 7 months I was diagnosed, referred and in key hole surgery to remove the Endo from my left ovary. That was Feb 16 and I was doing really well - pain and symptom free. Until last month. I was referred and today my consultant decided the surgery didn't work - 4 months and in pain? - no. So now ? Induced menopause - don't know which drug yet and add on with HRT. I'm NHS in the UK so we get this free. (Not the HRT, that's £8.75 per month) I'm scared but prepared. 6 months of treatment, 2 month wait, then left ovary removal if this doesn't work. I'll hit menopause with a real bang. I've warned my mates, my husband, my kids and my work. I'm ready because I refuse to live with this. Good luck everyone x
I'm just at the start of this. Had my second injection last week.
First one was really emotional it probably more to do with just having had my operation and feeling cheated that I'm having a menopause so young.
Second one so far just some tears and hot flushes.
Keeping telling myself it's not forever and hopefully it'll help x
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