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Endometriosis UK
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GNRH drugs.

Hello....

I think the GNRH drugs maybe the next step that will be suggested to me.

Are all GNRH drugs the same? Is there one that is more effective on Endo them another and is their one that has fewer side effects?

If you are prescribed HRT also, does this stop the side effects of the GNRH medication.

I would be grateful for your ecperiences.

Thank you

Barbara x

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Hi Barbara

I'm not sure if there is much difference between them on the effect on endo and how they work but my understanding is that the zoladex injections themselves are more painful/uncomfortable than prostap. Zoladex is more like an implant whereas prostap is more like a normal depo injection. Also, prostap is more expensive so a lot of doctors and GP surgeries prefer zoladex but purely due to cost, which is mainly why so many people are on it. My GP surgery tried to get my prostap changed to zoladex for this reason but my gynae had warned me that they may attempt this and told me to refuse and stick with prostap as it was his preferred version of the drug. Also, from this forum it does appear that people suffer more with zoladex than prostap, but of course that could just be down to more people being on zoladex than prostap.

For me HRT was a bad decision, I didn't start it until 6 months in and only then because I was having prostap for a year but for me it completely contradicted the prostap so I felt like I was taking 2 drugs that were cancelling each other out. In the end I only took it for about 4 weeks as my gynae agreed I could carry on without it. It did have some impact on side effects, i noticed slightly less hot flushes which was good as I was on holiday and it was almost 40c and I slept a bit better but I had managed ok with the side effects for 6 months so it wasn't worth it to me to carry on with the HRT. Also taking HRT from the beginning will impact on how well the prostap or zoladex etc works as you will be reintroducing oestrogen and will most likely continue to have monthly bleeding x

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Thank you Hayls.

Did you notice any mood or weight changes on Prostap?

How long have been been on it altogether?

Regards,

Barbara x

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Hi Babara,

I have been on 2 types GNRH -the 1st I tried was called SYNAREL and is availablea as a nasal spray,As I have many bad reactions to drugs I was anxious about having an injection and of course it is then in your system until it wear off.I agreed to the spray on the condition that if side effects were severe I could just stop.For me the synarel was very helpful in that it stopped my periods after a couple of months and reduced the pain a bit -I had hot flushes but found them ok as I am a cold person,so was quite nice to feel warmer!However when I stopped after a year of taking(without hrt) I had a massive endo flare resulting in more burst cysts and numerous admissions in severe pain.I was then put on DECAPEPTYL-which for me was miraculaous.I had monthly injections -6 months without HRT and then 18months with.I did not bleed at all after 1st injection and was totally pain free.I had 6 months were I forgot I had endo,with no pain killlers at all.I did experience hot flushes and may have had other side effects but at that point in 2008 I was recovering from Meningitis.For me no periods and no pain was worth the hot flushes and few extra hairs on me chin!! I know others have horror stories but I would gladly take Decapeptyl till menopause if I was allowed.

My problem started when I had to add back HRT which seemed to make my asthma worse.I tried 4or 5 different types,eventually settling with patches.This stopped the hot flushes(which really didn't bother me) but made me feel breathless.Then to add to things I took a bad virus and coughed so much I was suspected broken ribs.I was then hospitalised with a suspected pulmonary embolisim -so HRT and decappeptyl were stopped .I was sent for dexa bone scan and my bone density was lowered( not yet osteoporosis) and so now no more GRNh.bONE DENSITY loss is a side effect,but it is replaced when you come off GNRH,so is reversible.In all I was on grnh for about 3 years which I was so very grateful for,but now am only allowed Depo Provera and this is simply not working for me,although it helped in the past.

For me,decapeptyl was miracaulous -no periods,no pain and I actually found that my moods were much more level.The depo makes me feels very up and down mood wise.

I have not had a lap in 10 yrs,as I have been too ill with ME and Meningitis and just felt I could not cope with any more surgery or time in hospital! However my gynae who is an endo specialist said that if GNRH agonists are effective it is a very major indicator of endo and adenomyosis and also that hysterectomy may help.I have been putting off hysterectomy( my last resort) as am really not convinced I have adenomyosis,but am in so mauch agony on the depo that I am at end of tether.

Have just been to see general surgeon re adhesions and endo and have to have a CT scan,so guess I will have to see what this shows.I think it had gone deep into my bowel.Sorry I have rambled a bit!

As far as I know most gnrh work in the same way,by switching off your hormones and allowing the endo(fuelled buyoestrogen) to shrink down( it is still there but will not cause pain).There is one called Danazol which I think works differently in that it increases testosterone,which floods out the female hormones.I don't think it is used much now as it has masculising side effects( weight gain,deepedned voice,hair growth) but I know it is used for oestrogen related breast cancers.

I think age has an effect -I am near menopausal age(48) so maybe my oestrogen is running down a bit,so I have not had severe menopausal side effects from GRNH.When I had add back HRT when on Decapeptyl I did have the odd bleed which caused pain,but not to the extent of pain when not on it.

I would say,if you are in your 40s that GNRH are worth a try -but do understand that when you come off them you will be in10x as much pain,so need to have a plan ready for afterwards.Some doctors will allow you GNRH drugs wirh add back HRT for extended times,but some stick to the 6 month rule.My 6 month trial was meant to be leading up to total hysterectomy but unfortunately Meningitiis in 2008,meant was not in any fit state for major surgery.

Wishing you luck with your next choices.Sending yopu a hug.

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Thank you daffodil.

You have answered all my questions.

The ladies on here (yourself included) are much more informed and supportive then any doctors!

I had an MRI in December and that showed adenomyosis (+a fibroid) and I have to have a sigmoidoscopy in April. It's not much fun.........I'm coming back as a man next time!

I am 43 so if it's suggested I may try the GNRH drugs. I'm definitely at the end of my tether with it all now. I was in hospital two weeks ago, if the doc offered me a hysterectomy, I would have consented! I had Just had enough.

I hope your CT scan goes ok. Will you let me know how you get on?

Thanks again.

Barbara x

P.s I did try Danazol when I was first diagnosed (1991). I grew quite an impressive moustache! X

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I think we become "expert patients" when we have long term conditions lol! And we all know our own bodies far better than doctors do.They can only do tests,scans and work from concrete symptoms.Rarely will they listen to what you are telling them -eg I have had recurrent cysts since age 18yr,but they are not endometrionomas,but normal graffian follicular cysts which abnormally keep growing,burst,but as they are filled with fluid are just reabsorbed withingnafew weeks.Only once in 30 yrs have they actually managed to scan and record one on ultrasound,decide to operate to remove it then have it disappear completely in 4 days.So I would sayIcould feel a tennis ball in my lhs,but by time I got a scan it would have burst and they then would say ah no cysts just a UTI.I have lost count of the number of times it has happened in exactly same way.

You are a great asset to the forum -with your lovelyY photos to cheer us up and sense of humour!

I have only come on this forum in December and have had such a wonderful support from all you lovely ladies.It is the on ething that keeps me going ,as I am in so much pain that I am either up all night with it or if I sleep then drugged with pills.I am truly at the end of what I can take pain wise as have ME/Fibro and disability from Meningitis to deal with daily.I am just scared that if I do go ahead with major surgery that it will not help and I will still be left in pain.

The forum is great as there are so many different experiences and as endo is such a lonely disease which you really cant talk about over a cuppa and cake,this forum is a life saver for many of us.I read with sadness about the young girls suffering so much,as it seems sad that 30yrs on they are still being dismissed with stress,ibs etc and not being taken seriously.

Keep in touch and hope your appointments comes up quick -not too long now!

Hugs and warm wishes,Gillian

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Hi, I was on Prostap last year for about 6 months in total. I had no periods (apart from 1 right at the beginning) and no pain at all - a godsend! However, I did have mood swings and hot flushes, but could cope with these. The 1st 2 injections were monthly, then I had the 3 month one - at this point I got anxious and depressed and ended up taking anti-depressants. I also had trouble sleeping. But still no pain! It took a few months for my periods to restart and the 1st 2 were almost painless - for the 1st time as an adult, I experienced what it must be like for a 'normal' woman! But after that the normal pains returned and I've just had a lap. I go back to the gynae in March and was told I could consider hysterectomy or go back on Prostap - but I would have to take HRt this time (I didnt before). SO my experience of Prostap was mixed - at least I know what to expect if I go back to it. It was worth it not to have any pain and to be able to plan ahead without thinking 'but what if I have my pains?'.

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Meant to mention Cuddlybarb that a lot of ladies find the monthly injections easier to cope with,side effect wise.Suppose it is less dosage at once -may be worth while asking for monthly jabs.I was ok as my GP surgery is just down the road,so no problem going every month.

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Thank you daffodil.

Take care lovely lady.

X

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Hello charliesays.

Thank you for your reply. Do you think HRT would have prevented your anxiety and depression while on Prostap?

I'm concerned about the drpression side effect of these drugs. I also suffer with migraines and I wouldn't want the GNRH to make them worse!

Barbara x

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Hi Barbara, I'm not sure about HRT to be honest - but I am going to ask my gynae when I go back . Its probably best if you ask about it if you're worried. I didnt realise it could be a side effect and my GP didnt pick up on it either - I only found out later after reading up on it. I understand HRT can help with other side effects - I've been told I'd need to take it this time because of the risk of osteoporosis. Hope everything works out for you x

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Hi CuddlyBarb - just a quick update - I had my appointment the other day and have gone back on the Prostap (turns out my ovaries, womb and bowel are stuck together, so surgery could result in a colostomy bag - I REALLY don't want to go down that route!). I asked about the depression and insomnia and my gynae said that HRT should combat it, so Ive been prescribed it. She also got me a prescription for a lubricant (didnt know they prescribed that kind of thing) so if the HRT revives my libido, I should be sorted! LOL!

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My fingers are crossed for you x

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Thanks x

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