I ended up in hospital the other month because of the endo & PCOS. I was in hurrendous pain. I had many scans, blood tests etc... As I have stage 4 they basically said it's very bad and cannot be left just taking painkillers as treatment. In pain everyday, collapsing on the loo, bowel, bladder, stomach, all female parts effected etc...
Anyway I've been booked in for GnRH induced menopause 4 weekly injections and HRT which I should start on Tuesday.
Has anyone head these, please could I get some advice? I am 25 and really don't want 6 months of menopause! Thanks
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Green17
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Please research this THOROUGHLY - delay starting if you need more time to look in to this and prepare for what may lie ahead.
There are serious drugs - the strongest you will ever likely have in your lifetime and the side effects can be horrendous too, not for everyone, but they can be and preparing yourself and your family for what the drugs can do to you is absolutely essential.
Please use the searchbox on the green bar at the top of the page.
There are several GnRH drugs- all do the same thing. They shut down the pituitary gland in the brain, so regardless of which drug you are on the side effects are the same, because the side effects are a result of the shutting down of the pituitary.
there are plenty of links to relevent pages and websites online on the previous forum discussions and thousands of us have experienced these drugs and precious few would actually recommend them or have them again. which speaks volumes.
DO your homework. Look for Prostap Lupron Decapeptyl Zoladex as well as GnRH as search terms.
On google - look for these words plus "side effects" and "complications", "law suits", "patient advice leaflet" etc.
Look at all the patient advice leaflets, regardless of the drug you are offered. they all include different aspects of side effects, but they all apply to all of the drugs. Each patient advice leaflet will be the barest legal minimum warnings that the respective manufacturer is obliged to give. there will be plenty left out of that advice because they don't want to scare away lucrative customer business.
I would also suggest strongly that you research the pituitary gland and the hormones that it produces - and what they do in your body.
Then look at what not having those hormones does to your body because those are the side effects you may experience and you will experience quite a few. No one has these drugs and has no side effects.
they are chemo drugs - but it is how they work on the brain that is the key to what they do.
There isn't a simple or quick solution to researching GnRH. So reschedule the date for starting if you are in any way doubtful - because once you start you are stuck with that drug in your body for the full month of full strength, plus up to 4 months afterwards as it wears off out of the body.
and if you do start - remember you can always quit if it gets too bad. the drugs are not a cure for endo. they are putting endo in a coma nothing more than that. the endo will still be there without surgical removal, and will reactivate once the drug wears off leaving you in exactly the same position you are in currently.
You really do need to have surgery to remove existing endo as it's the only way to get it out of your body.
Hello. Im 27 and i also had the same worries about these injections. I am now on my second zoladex injection and i can say they have really helped me. I have stopped bleeding every day and i dont get any pain. I do get hot flushes but only at night and i find it passes really quickly and i am soon back too sleep. Do read up on them but there are a lot of horror stories out there that can scare you off. I haven't had and HRT with my injections so i cant advise on that side of things. If you are in that amount of pain it is worth a try.xx
Sorry to hear about your situation. I personally have had 2, 6 month courses of Zoladex to put me into an artificial menopause. Its really difficult to advise as it affects everyone so differently, it really is about how your body tolerates the treatment.
I would say not to go ahead with anything you aren't sure about. My first course started on the day of my first lap so I didn't even question it at the time but for my second course, I was much more in charge of the decision making. Do as much research as you can. I went online, rang helplines and spoke to a number of Doctors and ultimately my decision came down to whether the potential benefits outweighed the risks and side effects. As much trouble as I had with the treatment, I did it because the chance of it helping was more important to me than the 6+ month worth of trouble I was going to go through.
The other important thing to remember is that it is your choice to have every injection. If you decided to go for it and dont like it, you can stop the treatment anywhere down the line. The knowledge that I could do this really helped me in my second course. 6 months is a long time to decide on but when you break it down into month long chunks, it becomes a little more manageable.
Do you have any idea what the plan is once you have completed the treatment? Have they discussed with you what the aim on it is? My two experiences differed from eachother massively but I will happily share them with you if you would like the information?
Hi Ladies, I have read your posts and find them very useful. It does still confuse me though. Because I had a laparoscopy and they perforated my bowel and I got septicemia, peritonitis etc... Then had to have a laparotomy. They have basically said I cannot have further surgery as the endo is extensive and would be dangerous to even consider removing it. I am in pain every day, I have a tens machine codiene etc... But the pain only goes away for short amounts of time. They didn't really give me another option when I went to the Appiontment as the doctor I saw performed my second emergency operation which saved my life. She knows the state of my insides better than me and in the 36 years she had performed surgeries she said she had never seen it this bad before
It sounds like quite a complex case really Green17, no wonder you are confused!
Are you being administered your treatment by a specialist doctor or a nurse do you know? I was given the opportunity to briefly chat with the doctor before each of my injections was given when it was done by the doctor rather than the nurse, maybe you could talk to them about the reasons they have advised you to do it and what they hope to gain from it?
It really is difficult when someone else knows whats going on inside of your body more than you as they have seen it. I know what you mean in regards to the fact that with this information, they are more equipped to make an assessment but the choice really is down to you. I would say that if your situation is as bad as you say, what do you have to lose from the treatment in comparison to what you could gain? What exactly is your main concern about the treatment?
When I was advised to have my second lap and they talked about GnRH depending on what they found, I was so disappointed and tired at the thought of it all that I got home and realised that I hadn't asked a lot of the things I wanted to ask. I rang the hospital and asked to speak to my gynaecologists receptionist and explained that before I went ahead with it, I would like to ask a few more questions. Maybe you could do this? Ask them what the purpose of the treatment is and if it is successful, how do they plain to manage your condition after the 6 months is up (I am assuming it is 6 months)? If you are not sure on the treatment, you could ask to see your specialist again and just explain that you have concerns.
GnRH treatment is definitely no easy ride and as with anything, its just a case of you weighing up what you hope to gain from it and whether it is worth the downsides of it. If you don't feel like you have enough information to do that, don't be afraid to postpone and get the answers you need xx
I think that's what I find so hard. When I go they don't really seem to know what to do with me, I get passed around from doctor to doctor... It will be administered by a nurse, they just booked it for after I have had my AF but ASAP. They suggested IVF ASAP and I would be my partner really isn't ready and I cannot force him if it's not what he wants. So they have suggested 6 months of this to decrease the oestrogen and hopefully this will in turn decrease endo as you prob already know. I've read so many horror stories then a minute few that it has had a positive effect on! After that I suppose they will expect me to have IVF then I'll be stuck in a rut if my partner still doesn't want it
I had my first injection almost three weeks ago. I really didn't want it but my pain got so severe I was desperate.
The day after the injection, I got a mild headache. I also felt a bit nauseous. But these side effects were ok and I thought I was one of the "lucky" ones!
Last Thursday I started to bleed and experience severe pain in my pelvis and back. I hardly slept Thursday night. My mild headache went into a severe migraine.
I've spent most of the last few days either in bed or on the sofa. My pain is easier, and my migraine is now a headache but I'm still bleeding.
My next injection is due next week but I don't know if I will have it.
I think if the GNRH was going to cure my Endo, I would tolerate the side effects but it only puts the Endo to sleep whilst I'm having the injections. And there is long term risks to GNRH.... For me, I'm not sure it's a risk I want to take!
I really appreciate the honesty by all you lovely ladies. I used to feel alone with this but speaking to others that also have it makes me feel a little better. I know that my family and friends see me in pain all the time but don't really understand my illness. How can they? They don't feel how I feel everyday.
Sorry to hear you've had a bad time, please let me know how you get on and update me. If I go ahead I will let you know how I get on. I was confused before and I still am. That's no ones fault, it is a big decision but I cannot carry on the way I am at the moment. I feel at this point it's worth a try, if I react badly, what's the worst that can happen right?! At the moment I pass out on the toilet (embarrassing at work) i look like I've got a fever in my office, bright Red cheeks and chest (very unattractive) I walk like I've got a plastic back because of the pain. Constantly running to the loo, lying on the floor to ease my back pain, can't sleep because of when it radiates down my legs. I wear a TENS machine, I used to people staring as it's hard to conceal. I'm constantly in tears, I've never been moody in my life and my partner says I'm very tetchy at the moment. He's so laid back I'm surprise he hasn't walked out before now. How do we go on like this!!!!!
What other treatments have you tried .....lovely lady?
Impatient's right. Zoladex (GnRH) is very strong drug. I had a couse of GnRH injections twice (well kind of!)
The first GnRH was in 2011 and I had Zoladex for 3 months. I did my homework and made sure I had my first one while I was on my period (I think it was just after the heavy day). I had my stomach bloated soon after the injection and that happened every injections. I have migraines and unfortunately my migraines got severer and severer with Zoladex and I got my aura really severe during these 3 months. I put 3 kilos. You need to remember that you won't get pain relief after the first injection but after the second injection you usually get moreless pain free. Mine wasn't completely pain free but it was really good as I didn't take any painkiller for endo until Zoladex worn out (it was exactry 4 weeks after the last injection ).
The second GnRH was in February 2014. Because my migraine got worse my consultant changed to Decapeptyl and it was the bad move for me. I had really bad depression, mood swing and even worse migraine. My GP told me to cancel the second injection as I lost vision for a short time during the migraines. I lost count how many migraines I had since I had the Decapetyle injection. I couldn't cope with mood swing even I had HRT or HRT made me such a bad mood swing probably as I stop taking it and I felt bit better. I tell you that I had Decapeptyl a week before my period and I really had bad flare up and fainted twice because of pain. I forgot about that you had better take the injection just after your period starting for hormone reason.
For me GnRH injection is no no anymore but if you decide to have one my advice is have the first injection just after your period starting and once you start it you had better continue for 3 months to 6 months otherwise not much point putting your body adjusting after the first month. Month 1 is really for preparing for fake the menopause so your hormone gets upset. But when you can managed to go through from month 2 less pain days will be waiting for you.
Make sure you do your homework like Impatient's advice! Doctor didn't tell me a lot of things about these drugs.
I had decapeptyl 3 weeks ago. I've had a constant headache since.....but on Thursday I got one of the worse migraines I have ever experienced. The muscles in my face twitched and I had the twinkling light Aura. Then came the severe headache sickness and dizziness. The migraine was gone this morning (Sunday) but the headache I've had for 20 days, has returned.
I don't think I will have the 2nd injection.
Can I ask you when the GNRH induced migraine/headaches stopped for you after you stopped the injections?
I am sorry to hear you are getting bad migraines. My migraines eventually die down but I have been taking topiramate (migraine preventing tablets for over a year now). During these migraine hell times I had to dose up topiramate and I can't still get it back.
I had Decapeptyl in the end of February and I did have migraine free couple of weeks in mid April so I had about 5-6 weeks on and off frequent migraines. But I usually have migraines without injection so you may be get out of migraine quicker than I do.
I presume you are taking migraine tablet (not ordinary painkillers). Did you loose any vision while you are having migraine even for a short time? If you had a bad migraine you had never experience before, I think you should talk to your doctor before going to the second injection.
I would give another week or so. If you get migraine after that and getting worse talk to your GP. Also if you loose your vision (get black vision) go to see a doctor.
For me as long as I take Imigran for migraines I thought I could go on but my depression and mood swing put me off for the second injection. However GP stopped me the second injection due to my migraine with my vision loss so I had not much choice.
If we can't take GnRH treatment, is there no other choice apart from operation?
I hope you can find a good decision for you. It is shame as we suffer the first month we couldn't get much benefit. At least you probably miss next period. I haven't had mine yet so far but feel it may come any time. My tummy is bloating like a balloon last few days...
I also take a preventative tablet (propanol) which has reduced my migraines from weekly to once a month. But since the GNRH they haven't been working (or that's how it seems)
I haven't lost my vision but it has been severely impaired!
I am not going to have the 2nd injection on the 6/5/14. It isn't going to cure my Endo and I am truly concerned about the long term effects of the GNRH.
I have the mirena in and that (before the GNRH) has made my periods so light. It hasn't affected my mood or migraine attacks.
I had to take more preventative tablets (topiramate - I used to take 2 tablets but after injection 3 tablets). It eventually managed to prevent some migraines but now I can't reduce the dose back to 2 tablets. I tried twice so far after a week of migraine free I reduced to take 2 tablets of topiramate but my migraine is rushing back.
I feel I still have a little bit of mood swing sometime. I feel sometime my personality is changed. I am still aggressive side and I can't stop myself. It is a lot less than last month and I am hoping it is going away. Is this the difference between Zoladex and Decapeptyle? I didn't have this aggressive mood swing with Zoladex.
By the way I didn't have hot flashes neither with Zoladex nor Decapeptyl. It is different with everybody, isn't it!?
9 weeks from my first (and only) Decapeptyl and I haven't had my period yet. After flare and the terrible period, I have been quite good with tummy pain free. I wish I didn't have the mood swing and migraines otherwise I would have continued for 6 months...
Are you constipated a lot more since the injection? I am glad your headache is getting milder.
I am getting more chest pain which I usually get leading up to my period so I am suspecting that I am getting my period soon. My pelvic pain is there but compare with before it is a lot better. I am getting adhesion pain and I guess my Endo is still bit sleepy this month.
So many different kind of side effects with this kind of injection! I eat some dark chocolates for constipation but it might give you more migraines so I won't recommend you! The second one would be drink a big glass of water when you wake up (before breakfast). By the time you finish eating breakfast you should be on the toilet :). Pu-erh tea (Chinese tea) works for me too. I hope you get better soon.
My GP thinks my chest pain is related to endo and he sent me to a chest clinic. My Respiratory consultant thinks my chest pain is related my period and I could have endo in my chest but he can only confirm by a thoracoscopy.
I had been having chest pain and breathing difficulty when I have my period quite sometime and last December I had some symptoms of minor lung collapse but I didn't go to hospital so they couldn't confirm. It was a really bad chest pain (worst one) and I couldn't easily breathe for a while but I had much worse and longer pelvic pain before and I didn't faint so I thought I would be OK to continue. Since then I have uncomfortable chest pain a lot. I have chest pain when I have period and ovulation. I have breathing problem when I have my period as well.
I am not keen on having a thoracoscopy until I get at least my lung collapse is confirmed. And also I would rather have it done by an endo specialist. I don't know how much my Respiratory consultant know about endo. He seems to know my gyno consultant quit well somehow.
At the moment I am hunting an endo specialist center which has a lung endo specialist.
Take care
xxx
Cuddlybarb I just wanted to 2nd what Shukudai posted that the 1st month will always be the worse.
Everyone will bleed after the first 2-3wks and they tell you to expect it to be heavier than your regular period. For me I wasn't affected too much by the hot flushes it was the headaches that where by far the worse for me as I was having migraine type headaches every few days and no amount of painkillers shifted them.
The first month will always be bad when your basically going into the menopause but after that things do start easing up so you might want to consider sticking with it for at least another month to see if things start easing off x
My subsequent months actually got worse - the flare stage for me on zoladex was a doddle compared to about halfway through month 2 onwards and then months 3 and 4 were ghastly ones. We are each different and I guess if there are no other alternatives on the table then it is worth trying, but sadly it is not a case of saying "what have i got to lose?" because there are short term and long term risks
I would also add that if your home life is stressed by bad moods already -it is possible that these are nothing in scale to what can happen with the GnRH and it may take the strongest of partnerships to survive unscathed from the anger and frustration and badmoods and uncharacteristcaly bad behaviour caused by the loss of certain hormones. It isn't something you have any control over either so partners and household members do need to be forewarned about that side of things and to make allowances. it is most definitely the drugs causing it, and not the real you at all. Nor can you snap out of it. Just wait till the treatment is over and do a lot of apologising for what you have said or done, slammed doors, turned the air blue, ranted and raved at the slightest silly petty things. If you warn family in advance then it does take the pressure off them, and won't scare them witless when you do turn in to a she devil from hell at times for no aparrant rational reason. On such occasions it is best to remove yourself from the company of others shut yourself in a quiet room because you cannot help over reacting to everything and being away from others means you are much less likely to say the very things you really regret having said but it's too late.
my poor old mum took the brunt of my moods and she was an absolute saint for putting up with my teenage tantrums from hell (i am a mild middle aged woman who doesn't swear at home - i was slamming doors, calling people all sorts of unpleasant things, having strops for no reason and basically being an absolute beetch to everyone who got within a few yards of me at times.) Mercifully my wonderful mum by that stage new this was sooo out of character it must be the drugs and made allowances for me and yes i did rapidly calm down once stopping the drug.
Sorry for some reason I didn't see your last message about your migraines, on the positive side they are normal and stop fairly quickly after you stop the drugs (well they did for me) but if they're that bad then I can see why you don't want to go for injection no2.
Could you maybe speak to someone about getting something to help with the migraines to allow you to stay with the treatment?
I am in a similar position to you and just wanted t say that Gnrh although they can have unpleasant side effedts,can also give you back 6month -2 years of life.Due to other pre existing conditions( ME, then meningitis) surgery for stage 4 endo,possible adenomyosis was put off over and over,as my gynae said it was simply too risky.However I was totally bedbound with pain and really getting depressed and so was started on Synarel as a nasal spray - this was ideal as if I had experienced bad effects I just didn't continue.It had a miraculous effect,after the 3-4 week flare stage.Similarly with Decapeptyl I had a year and a half completely period and pain free.his has had consequences for my bone density,but this is reversible(which they don't say) and in my situation the relief from pain was worth the side effects as without it I was barely able to move and needed personal carers in.I would take it long term if only they allowed it,as for me it was miraculous and my illnesses in conjuction with endo leave me with poor quality of life.
Only thing is do not have HRT with it??You need time for th body's oestrogen reserves to dwindle.You can have GNRH for 6moths without HRT.After 6 months if you find improvement you will need HRT.
Certainly it is worth a try?In the end it is your decision - go with your gut instincts.Have you tried all other treatments eg mirena?Havent had myself but lots ladies find it really helpful.
Wishing you luck and do let us know your decision.
Do you ever feel that all the Endo treatments are like playing Russian roulette ? We never know how we will respond and what suits one lady is hell for another!
I hope you are well today.
Barbara x
in reply to
Barbara that is exactly the way I feel, at the minute I know I am really lucky that I don't get much pain at all which is why I am horrified they are suggesting I get a hysterectomy at just 36 because with all the problems that come with them I know I could be left with more problems than I have now. I do really feel we are playing Russian roulette with every decision we make x
Barbara, thats the perfect description for how I feel when a new treatment is suggested! You never know how things will go for you because unfortunately, there isn't a 'one size fits all' solution.
Im new to this board as of yesterday and the instant sense of relief I got knowing I could talk to people who know what im going through is amazing because it sometimes feels like you can't do right for doing wrong with the medical side of things. I just hope that as many people as possible can access the treatment thats right for them as soon as possible xx
A great analogy Barbara - it is the sense of not really having control that is so frustrating and I think why we ladies often have a long search through every complementary as well as conventional approach to managing the symptoms.Even with my other illnesses I have been able to find alternatives that do help some of the symptoms.I have found herbalisism very effective for ME but alas this flare since last October has undone all the work I did with herbalist in detoxing my liver,as I am now rattling with pills pills pills and still in pain.
Managed our for a test drive of my new powered wheelchair this evening -will most definitely need Lplates ! I thought you would just push joystick forward and back,but you actually have to steer it to keep in a straight line! I am so excited about my new freedom as have been 6 yrs with an attendant pushed one,which has rarely been out of the cupboard as my (soon to be ex husband) refused to push me.Looking forward to not being limited to going out without assistance,as I need someone with me on crutches.
Sorry to hear about your difficult situation. Just reading through all this and I see that one poster has asked what do your doctors propose longterm? You can't take GnRH for the rest of your life.
Also, despite your doctor's 36 years of experience I would strongly advise a second opinion even if you have to pay to get it privately. Is your doctor a general gynae or an accredited endo specialist. Some general gynaes are good with endo but I gather that many can be not quite as good as they like to think. Endo is a specialism all on its own. Even some endo specialists can be a bit lacking! I feel that your situation is quite complex and even if you are with an endo specialist a second opinion is warranted.
Good luck Green and let us know what you decide. Hugs to you. x
Hi, Im on my second bout of GNRH - but Prostap, not Zoladex. I seem to remember reading somewhere that Prostap is the better of the two, but more expensive, so you often get the Zoladez injection because of this. On my 1st course of Prostap, after the 1st month's flare up, I had no bleeding, no periods and no pain - marvellous! But I did have some depression, insomnia and hot flushes - however, I felt so much more healthy and 'normal' that I fellt it was worth it. As I have just started another course of injections, I have to have HRT and so far I havent had any of the side effects I had last time (fingers crossed). I would agree with the other ladies - everyone reacts differently to these drugs - if yoo go ahead, have the monthly injection and see how you get on with it.
Hello Ladies, thank you for all your info and Kind words. Everything was so useful to me so I decided, hey let's try it, every woman is different!
Well I walked in and they asked me a few questions and I agreed to the injection. Then the nurse asked when my last period was as you have to have the injection just after. This is when it hit me. I haven't had one since 19th March, 6 weeks ago tomorrow! I had been totally consumed and stressed about all of this then made my peace and decided to have it that I didn't give me period one thought. Pregnancy urine test was Negative that they did at the hospital?! I've fallen pregant my once before but only confirmed after 6 weeks but were not sure as my periods are also irregular. They had to monitor me every 48 hrs to check the HCG was doubling which it didn't and ended in miscarraige at ust after six weeks as it wasn't growing. So my cycle are 34 days apart, I usually feel Ov 2-3 weeks in as the pain is hell but didn't this month... Now I'm 6 weeks down the Line with no period and no positive test and still in lots of pain?!?! What the hell do I do?! The snotty male doctor said this is inconvenient I highly doubt your pregnant, come back in two weeks and we will go from there. The nurse on the other hand was very understanding and told me to forget about everything stop stressing and what will be will be. Obviously they haven't got endo and not a day goes by that you are not in pain and do not think about it, let alone today's news!
I hope you lovely ladies are feeling a little better today xxx
I was 25 when I was diagnosed with stage 4 endo just after my husband died! I have to say after all the pain etc in the last 5 years the only relief I had was during the zoladex injections! My advice is go for it, if you are stage 4 I can guarantee that you will not notice the menopausal symptoms because of the huge relief from pain, I would give anything to have another round but for me it's a total hysterectomy to give me those effects.
My advice go for it and don't look back! Ps I didn't have the HRT either as it's so much more effective without it of you can cope.
Hi l just wanted to tell you that l had those injections and it was the worst decision ever. It didn't help with the pain which l have daily, the side effects are awful it really is like the menopause, hot flushes, night sweats keep you awake. I wanted to stop after the first injection but my doctor said l had to do it for 3 months. After that l started to get terrible pain attacks so bad it felt worse than labour, ended up in a&e and turned out l had gallstones! Doctor said it was due to the hormones l had in short space of time. I had to get my gallbladder out and have not been right since. You are so young maybe something else would help have you tried the mirena coil? I have also heard acupuncture helps l think l will try that next l hope that you get the help you need and get better soon xx
I'm not sure if any ladies would still see this but I went for the injections. I was allowed 6 months of the treatment and I can honestly say that it was the best 6 months of my endo life. Minute the first month of it settling in. The headaches were more than usual but welcomed rather than my usual symptoms.
2 years down the line and there was no long term plan, I've been struggling for 1.5 years after the treatment. I've recently been in hospital with PCOS, hurrendus endo side effects and now ovarian cysts.
I've now been told I have to go for IVF in January. So I'll be doing it with or without my partner, I've made my decision.
So an evaluation on the GNRH injections was positive for me. But with no children and being under 30 I could only have 6 months.
Hope you are all well, and thank you for all of your time consuming messaging, they were much needed support.
lol .... I'm so sorry i didn't realise this post was 2 years ago!! sounds like you had a positive outcome hope all goes well with your ivf!!! good luck xx
I'm in the position you were in 2 years ago. I had my first lap 2 weeks ago and have been advised to have a course of zoladex before we start our next IVF cycle. I'm really in 2 minds about what to do - I guess I was hoping that all of the endo would be removed surgically but it was too widespread. The IVF consultant wants to see me ASAP so I guess I'll have to talk it through with her. Are you having any more treatment before you start IVF? xx
Hi there I am on Zoladex at the moment..... just into week 3 which i think is a similar drug to the one you are going to be on? I really haven't had any side effects yet but it's early days? I am 41 though so quite a bit older and to be told I wouldn't get a period for 5 months filled me full of hope despite the menopausal effects I may get? I just thought 5 months pain free.... and that was what swung it for me? I am hoping for a hysterectomy though so guess maybe my situation would be different to yours? I hope you get something sorted it sounds like you are in terrible pain, I just can't believe how many sufferers there are out there
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