So i met with the gyneocologist yesterday, and he's decided the only way to prove that this is endo related is to give me the injection which brings on the menopause for 3-6 months. He didnt mention a name of the injection, does anyone know if there is more than one, and if there is, is one better than the other?
I'm 21 and this is the first step in 3 years that the doctors have taken towards looking for endo, i've just been shoved on the pill for most of my life.
Any knowledge that anyone has will really help me. I have a month to decide if I definitely want to go
Down this route but right now i feel like if I dont then they arent going to do anymore to help me as i'm not willing to have the mirena.
Thank you xx
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Andys_Girl
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I am in the same situation, but have tried the mirena. I am also 21 and my consultant seems persistent in putting me on the menopause injections. I don't know much about them either and the things I have read seem very daunting for us to go through especially at such a young age. The name I was given was zoladex but I think this is just a brand name, I'm not sure if there are different types.
If you get any more information on them and could share it, I would be very grateful and I will do the same.
Thanks muchly Hol92. I felt that the mirena was just a way to mask the symptoms again, and as they won't give me a laproscopy until they have decided for definite that my pain is ovary related, these injections seem like my only way of moving forward, however i've also read the posts regarding Zoladex and so many people seem to have had awful experiences! I've already had to leave one job due to the pain I was in and can't afford to lose my new one from these injections either!
I hope someone will be able to give us some answers! Xxx
Thanks for the reply, Andys_girl. My experience with the mirena was awful my body rejected it 5 times and I think it is what has caused me to be not having periods now because after doing the research one of the side effects is, it can cause PCOS (which I wasn't informed). My consultant is also reluctant to do another lap as he says it's too invasive and only gives me relief for a few months, but reading about these injections for the few they have worked on, once they have stopped their pain has returned, so I am really struggling with what to do.
Sorry to hear you had to leave one job, I hope your new job is a bit more understanding.. I am a student nurse and am starting to worry my time off is going to have an impact on my learning.
I just finished three years of uni! How i made it through the last year I don't know! I was working as a care assistant as well as doing my final year project and having all the pains and symtpoms of what I can only see as being endo! Yesterday the gynecologist said to me he thinks its endo and that the mirena would only help reduce the symptoms and wouldnt actually tell us if this is endo related for definite, so it seems to me that the injections are the only way to finally be sent for a lap!
Hopefully if you explain to your lecturers and placements that you have health issues you may be able to qualify for extenuating circumstances, especially if you can prove through letters etc that you have to attend numerous hospital appointments etc.
I found a job six months ago which has less lifting and pulling and i really enjoy it but after already having a month off with a kidney / bladder infection i cant afford to keep being off sick! Fingers crossed il be one of the lucky ones that it all goes smoothly for! Still not overly keen on having the menopause at 21 tho! Most of my friends are giving birth within the next six months.. Im going to be menopausal! Doesnt seem very fair!
My sister is also having a baby due in march and the thought of seeing her all blossoming and pregnant whilst im menopausal makes me feel quite low too! But i guess its what i need to do to hopefully one day be able to have my own baby! Xxx
There is only one treatment to shut down the pituitary gland in the brain which is where lods ofhormones are made. This treatment is chemo. It is the GnRH family of drugs that cause this to happen.
There are lots of choices in GnRH drug - and they all do exactly the same thing inside you which is shut down the pituitary gland.
Each is a slightly different set of ingredients but the only difference that you will notice between them is how they get put in your body.
Side effects are caused by YOU. how your body responds to the loss or depletion of hormones is unique to you and will be the same, regardless of which drug you use to cause that to happen.
Prostap also known more widely round the world as Lupron is injected every 28 days in the bum or thigh.
Zoladex also every 28 days is a pellet that is plunged in to the stomach alternating sides each month.
Synarel is a nasal spray version taken daily
Decapeptyl is injections
and so on. rather than list them all takea look on the endo page
No matter which one your Doctor gets paid his biggest bonus to promote to you, the results will be the same as far as your experience is concerned.
The drugs themselves don't cause the side effects - it is your body responding to the loss of the hormones from the pituitary which causes the side effects and how mild or severe they might be.
These are super powerful drugs, not like anything you will ever have likely used before or will use ever again either.
One thing is that being chemo youcannot lose your job for needing days off work due to side effects. You are no different to a cancer patient on the same drugs for cancer, you are entitled to any amount of leave you need while under treatment. you cannot be disciplined for that or fired for that under the Equality Act2010 you have the same rights as a cancer patient would have.
i will write more on this topic later tonight - but have to collect kids from school and sort them out ready for karate, brownies and athletics etc all happening this evening, so must dash.
Yes Andys_girl uni are aware of my condition and are being quiet supportive, however if I have too much time off and fall behind I am worried they might suggest a year out, which I really wouldn't want. I know exactly what you mean a few of my friends are having babies too. It's just a rubbish place to be isn't it!!
Thank you impatient for your detailed reply. I will also read the link you have put on. But now I know it's chemo it has scared me even more!! How scary!
Hey. I was diagnosed at 21. I had a lap. at the end of last year where i was diagnosed with stage 4 endo. I have been on the Zoladex injections and add back therapy since April, and have just had my last one today. I have read some bad experiences of the injections, but I have found them to be ok. For me they stopped my periods completley, so i dont have any pain, just the odd twicth no and then. I did suffer with a few side effects I had really itchy skin for the first few weeks, and i still get symptoms such as hot hands and feet, but these are just symptoms of being in the menopause, and they die down. Hope its given you an insight into some of the positives.
I am going back to my consultant in a few weeks to see what next on my treatment.
Thanks for replying hun! Its a relief to hear someone who has had a positive experience from the injections!
Im currently rolling around the bed making my boyfriend rub the bottom of my back cause i'm in agony, just took some kapake pain killers which usually knock me out so hopefully within the next ten mins il be able to sleep through this awful pain! I definitely need to do something to stop this so hearing something positive about zoladex is helpful and reassuring, thank you xx
The GnRH drusg will not kill endo. it starts with a flare stage overloading the body with chemicals that give your endo/periods/pains etc a superboost, thishappens around week two onwards usually and can be a very unpleasant experience if your period is happening then.
But mercifully it is only the once - and it will ease off in a few days.
thisoverload causes the pituitary gland to shut down production of its hormones, and that is when you really notice the unusual side effects that you don't normally get with endo.
One side effect of course is that endo and thewomb are put in a coma. Not growing a lining, not shedding as a period etc. That's a good side effects and the only one you want to happen.
The rest are all ones that you don't want to happen but cannot help happening because this drug is a sedgehammer to crack a nut. It is only 1 hormone that it needs to target, but in doing so it hits a lot more than just that 1.
Here's a list of the hormones produced by the pituitary:
ACTH/ Adrenal glands / Adrenal cortisol production
TSH/ Thyroid gland/ Thyroid hormone production
LH, FSH/ Ovaries, testes/ Reproduction, sexual function
GH (growth hormone)/ Whole body, bones / Growth, body composition
Prolactin/ Breast/ Milk production for nursing
ADH (vasopressin)/ Kidney/ Water, salt balance
And here's just some of the side effects of not having enough of these hormones: (not my own list - I snaffled it from other websites)
ACTH deficiency: this hormone stimulates the adrenal glands to produce cortisol. Cortisol is necessary for life. Lack of adequate cortisol causes fatigue, weight loss, nausea, vomiting, low blood pressure. (It also controls levels of histamine, and without it, if you have an allergic reaction or illness then histamine levels can increase rapidly leading to irritated skin and hives. Anti-histamines can help with this)
TSH deficiency: this hormone stimulates the thyroid gland to produce thyroid hormone. Low thyroid hormone causes fatigue (loss of energy), weight gain, constipation, feeling cold and memory problems. Thyroid hormone regulates body metabolism and is necessary for life. (this one is the hot flushes, cold chills and all the side effects of hypothyroidism also known as under active thyroid)
LH and FSH deficiency: these hormones control the reproductive system and sexual function. Deficiency of these hormones causes loss of menstrual periods and infertility in women and causes loss of sexual function, a low blood testosterone level and infertility in men.
Growth hormone deficiency: Symptoms of decreased energy and vitality are common. Changes in body composition can also occur - more fat is accumulated (especially in the abdomen) and a decrease in muscle mass occurs. There is also a loss of bone density and an increased risk of bone fractures.
Anitdiuretic hormone (ADH (also called vasopressin) deficiency: this hormone is produced by the posterior or back part of the pituitary and is responsible for water and sodium (salt) balance. Deficiency of this hormone causes excessive and frequent urination and excessive thirst. If the patient does not drink an adequate amount of water, the blood sodium can increase abnormally and causes dehydration. Many patients can drink enough water to maintain a normal blood sodium level, but this is extremely inconvenient for the patient - having to drink large amounts of water (day and night) and urinating every hour or so to make up for the large urine losses from the kidneys.
(This last hormone ADH is not normally such a problem with GnRH drugs because production is in part of the pituitary that isn't normally shut down. )
So that is how you can experience some very grotty side effects and because how your body reacts is unique to you there is no way to predict when or how intensive this reaction will be.
And alot of these side effects can be happening at the same time, not one after the other. So you couldbe going through half a dozen or more side effects and can get very unwell on the drug one day and be bed bound but next day or a few hours later feeling a lot better, then something else hits you and knocks you back. you cannot now when this will happen or how long it will stayfor.
There are a lot of conditions that ifyouhave had in the past you should avoid these drugs at all.
The main one being any history of depression or mental ill health. It is not worth the risk.
After you stop thedrug there is noguarantee that yourpituitary gland will wake up at all, or if it does whether each and every hormone will get back in to full production once again,of how soon it will be, or which order the hormones do get back in to production.
Long term side effects are common and aredue to the pituitary not firing up and returning to the full working state it was in when it was overloaded and shut down.
In my case the longest lasting - which i still suffer with is loss of short term memory. It is very debilitating but not painful. whereas many patients are left with painful long term consequences of using the drugs.
There are thousands and thousands of lawsuits and patients writing about their own experiences online. There are victim support groups available in all sorts of languages around the world.
The main one to read before decising ifyou want to risk thisdrug is
Now for all the scary risks of using the drug and my own opinion that it should never ever be used for endo, it is your choice, it might work for you, it may be that you won't react as many do, and youwill find it helps you.
It does nothing to the endo - remember that- you are only offered it as a stop gap of max 6 months to cover waiting time for surgery, or after an op to try and prevent regrowth of adhesions too soon.
All the endocells whether in the womb or the endo, will reactivate once the hormones for periods are working again- takes average of 6 months for that, some ladies wait over a year and some find their ovaries never wake up and they are left in a state of menopause.
What it does to you it will also do to a baby, which is why it is vital you are not pregnant and don't fall pregnant while on the drug. Expecialy don't want the baby's pituitary to stop mid development and cause deformed organs and bones or cause you to miscarry the pregnancy.
whether you last 1 month or all 6months you still need to practise safest sex all that time and for an extra 4months after that last dose goes in the body. Hormone birth control doesnot work at all, while on these drugs. you must use barriers like condoms and diaphragms and caps etc, and spermicidal lubrication too if you dohave sex because you vagina gets very dry and fragile when the natural moisturisation is stopped from working.
Sex can be very painful without extra help moisturing and lubricating.
It should recover - as most things should recover, eventually at some point after stopping the drug.
You sex drive will be zero too, so don't expect foreplay to get you in the mood -it ain't gonna happen.
On the outside the most noticeable element is hairloss which varies from person to person, soe hardly lose any - some lose a lot of body and head hair.
On the inside - so may side effects
and in terms of family friends and carers the one to warn them all about is change in your character, and terrific temper tantrums you cannot control. worse than any teenage strop you can imagine. Your family will normally feel the full force of these outbursts - best to shut yourself in your bedroom away from everyone when these come on as a side effect.
I turned in to a screaming banshee, swore like a sailor, slammed doors the whole deal, and lucky for me mum realised this was so completely out of character for me that it must be the drug and put up with it and still cared for me through this time.
If your relationship with partner or co-habitees is strained at all then you must warn them and apologise in advance - there is nothing you can do to control these outbursts or what you say or do, so best to take yourself out of the way and stay out of the way till you feel a bit more civil.
There are people that cope well, there are people who have such a bad time that even taking HRT in desperation to add back some of the missing hormones - stillcannot bear to get past the 1st month and continue.
Stopping is not a failure, as no two poeple will experience the same journey,it is not a competition to see who can cope for the longest. The longer you stay on the drug the more side effects you are likely to experience as your body runs out of any back up supplies. It isnot a drug you will
'get used to'. and stopping after a bad reaction is not an instant resolution either.
It is a huge commitment to undertake these drugs, a big step in to the unknown.
And not being a drug that kills endo - I don't think we should ever be put on it, given the risks.
If there was any remote hope that it did kill endo then perhaps it wouldbe worth it, but 3 yearson and i still suffer from my 1 side effect.
Some poor souls suffer a great deal more than me.
The info leaflets for all of them are freely available online. just google the name of the drug and 'patient information leaflet' and you will find them.
Remember that these leaflets are the barest minimum legally required statements that the manufacturers are required to make.
They skip a great deal which has been found in reasearch on these drugs.
As an example in 1999, a research on congitive impairment (reduction in IQ and loss of short term memory fuction on GnRH drugs found that at all ages there was some impact, the greatest was found in women aged 40-50 ...in that group 80% would have a noticeable cognitive impairment and of those 80%, 40% of them did NOT recover that loss after stopping the drug.
So for middle aged women this is a huge deal to take in to consideration - yet not important enough to warrant a mention on some of the patient advice leaflets.
Only last year it became compulsory for the various manufacturers to mention the risks associated with the drugs causing depression so often- and that those who had a history should not use them. Prior to being forced to include the warning despite knowing that to be true- many of the advice leaflets didn't even mention depression.
So we are definitely up against the establishment with GnRH drugs and not getting the full story from the drug manufacturers and certainly not getting enough information from the medical professionals who are using us as guinea pigs and prescribing these drugs.
Sorry for the long post, i cannot shorten it because this is such a serious decision and I want to emphasize how much you need to be doing your homework thoroughly and discussing it with nearest and dearest before you decide to go ahead.
You need to know what it can and cannot do, before you start, but you have no idea what it will or wont do to you unless you do try it, and you have to weigh up the 1pro (endo) with the many cons possible, and decide in your circumstances would you risk it, or would you rather stick with the periods you already are familiar with plus painkillers you can control as and when needed, for the same length of time that the drug effects last in your body.
With the benefit of hindsight, having had a bad experience and being left with a long term legacy i was not expecting to happen, i would certainly not have risked it had i known anything about it or had any warnings at all or any choice in starting it, and certainly shoud have stopped at month two at most, not stuck it out for 4 months. in y case i was started on GnRH in hospital by a nurse. I thought she was giving me a stomach shot of antibiotics or pain relief after major surgery.
Only when i left hospital and saw it on my discharge letter that I was to carry on taking it, that i had a clue it was inside me and even then had no idea what on earth it was or would do.
at least mercifully you ladies are getting advance warning. You can do your research. You do have a choice.
Opting not to have it- will not jeopardise your right to try it in the future or to have surgery
(the only way to get rid of existing endo) or try any other treatment options.
It is 6months max in a life time because it will deplete the density of your spine bones and pelvic bones. This loss of bone density will not recover which is why 6 months is as much as you can afford to lose safely.
Hope this helps you know what these drugs are about and helps you to come to a decision.
It is your decision though, not mine, not the surgeons or your GPs. You are in charge of what drugs you allow in your body and it is you that has to cope with them and put up with whatever that does to you. Very Very best of luck if you do decide to use the GnRH drugs. you will need all the luck in the world.
Do you know what other options there are? At the moment i take the pill back to back for three months, but the third month is always horrendous and the break completely knocks me off my feet. I am slightly reserved towards the mirena as i feel it would be no different from the pill and right now my gynecologist wont refer me for a lap because of my age, there is going to be no other way of showing if my symptoms are endo related if I don't have these injections.
Do you know if there is any other options that I could bring up? Xxx
WOW Impatient ! I had no idea of all of this! I was under the impression it is a hormone that mimics menopause, never was aware it was chemo. Thank you so much for this information.
You have been the most knowledgeable source I have ever encountered in my 17 years of this disease. I am of the opinion that GP's should all be equipped with additional staff with knowledge like yours to aid patients with guidance. They themselves don't seem to have the time and perhaps are just after the mighty dollar that the pharmaceutical companies reward them. So glad I joined this forum, even if I am in Canada. Thanks for sharing, and thank your Mum for bringing you into this world to enlighten us!
Hi I am 24 years old and just finished a 6 month course of decapeptyl (same thing as zoladex). I also had 6 months of prostap (same thing again) when I was 17. My experiences both times were fine- the odd headache, hot flushes and night sweats. All very manageable! It really has helped my pain and It has been proven in research to shrink endo. Good luck in whatever you do! Try not to worry about it too much it can be very daunting coming on here sometimes- just think aswell it is not a very long time I have found both times it is over before you know it. Good luck Hun xxx
Surely this shouldn't be the first step they take? I'm 24 iv had endo for 5 years now. Iv had 2 ops to remove the endo as well as god knows how many other treatments iv tried. After my last op in January my gyne recommend the same (I'm not sure of the name of the injection think it begins with z?) but he also said I would need to be put on HRT (hormone replacement therapy) to reduce the menopausal side effects.
I think if I was you I would get a second opinion or go speak them a little more about this. there are so many other options to try before this. My endo is very server and so far have not been able to keep it under any sort of control. But having the false menopause and the HRT is something that I personally am in two minds about. This isn't a long term fix for some people it works for others once their body starts working normally again after the treatment their endo comes back so really you are clear for up to a year and in the mean time you need injections and tablets as well as dealing with side effect.
I think you need to find out all information and options before starting this treatment. And maybe even get a second opinion. Hope this helps
I do feel as though it would make more sense to be offered the lap rather than the six months of crappy injections to see if its even endo related.. My gynecologist seems to think this is the only way to show if its endo but to me being 21 and having the menopause doesn't sound anymore comforting than having endo :/
Im definitely doing research before i say yes to this and making sure my family and friends have an input too as it wont just be me dealing with the symptoms of this if i do decide to have it.
I feel quite lost and confused at the moment, stuck not knowing where i should be heading
I'm currently on the decapoptyl injections, almost half way thru and apart from suffering with horrible hot flushes I have had no other symptoms. My periods also stopped completely which is one positive. The hot flushes are pretty unbearable, mostly at night and have been getting night sweats too, I didn't start off taking the HRT but found that I needed too to ease the hot flushes, this has helped but find stress and alcohol a trigger so trying to avoid alcohol but it's been a stressful week at work so that's made them worst but I think this was the right decision for me, read some of the horror stories so was v nervous about having the injections but not suffered as bad as some people have. I have stage 4 endo and my consultant recommended this to relieve the existing endo and I'm scheduled for another op early next year. Good luck xx
I'm confused as to why people talk about GnRH drugs as chemo? They are a hormone treatment, also given to patients with prostate cancer. It is not chemotherapy as far as I am aware. As difficult as this can be for us all, I have to say I think chemotherapy is a different ball game.
I'm on Day 16 of first Decapeptyl, tired, bad back. Fine otherwise so far, and still anticipating initial flare, likely this weekend Things that have helped me so far in my 18 years since diagnosis:
Reading about others' experiences on this forum
Wheat free, caffeine free and alcohol free
Healthy diet - lots of Omega 3
Hot baths with minerals to relax muscles
Wheat warmer - like a hot water bottle, you put it in the microwave for 2 minutes
Tiger balm on my back
Stretching / Yoga / Massage depending on how I feel
Having a plan for each day, even if I don't achieve it all I know what to get up for
Speaking to people and accepting their help. Friends, family and coworkers. For the past two weeks my brother has come for dinner every night. Either he cooks or I cook. We eat, talk about our days and it makes the world of difference.
Stock of painkillers to be taken as needed, Mefenamic Acid, Tramadol and an anti-spasmodic
Stock of DVDs to watch
Remembering to be interested in others and help others when you can
Ignoring my thoughts between 11pm and 7am as my rationale mind is asleep leaving the panicky mind to take over! Never useful.
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hopefully mine will be the same xxx
Endometriosis and Adenomyosis
Injections Post Laparoscopy
Bleeding Heavily on Zoladex
When will my periods return after prostap 3 - 3 monthly injections 
Heavy ache/pain and Endo/Menopause
