I am only 16 and I have been told I am going to be put in a medically induced menopause. side affects?

[ladybird123]

I am only 16, and I originally had appendicitis in June 2012, after having laprascopic surgery I ended up bleeding into my abdomen unrecognised and have since had a hurrendous case of adhesions. I have since had 2 operations to try and clear the adhesions although have ended up with exactly the same after both operations. I have always had horrific periods and so it was not a surprise to me and my family when we were told I have endo. My hospital consultant has now recommended me having a medically induced menopause, but I don't know what to think.. I've scrolled the internet and i've seen 'amazing' but i've also seen 'worst decision of my life, now lost all fertility'. I don't know what to do help? xxx

[Hidden]

Hi, I think you are wise to question this treatment as I would be concerned about having a medically induced menopause at the young age of 16. Your bones are still developing. Please review this video, from the main ENDO charity in America. The topic you raise is discussed about 9 minutes into the video but it's worth watching it through (there are also some other amazing videos on endofound.org)

endofound.org/video/Nurse-C...

I think you should show this to your consultant, and perhaps there are some other type of oral pills that could suppress the endo. I think using GnRH analogues at your age is just too young but that is my personal, non medical opinion and no one else's.

You will at some point need excision surgery to remove the endo properly (not lasering or burning), but cutting out the endo, this is the best way that reduces need for further surgeries and I so wish I had this type of surgery.

Ideally, you should get referral to an accredited BSGE ENDO CENTER - look here - bsge.org.uk/ec-BSGE-accredi...

You are a wise young girl to be questioning this. Perhaps there may be a need for GnRH menopause in a few years but I really question whether that is right for a 16 year old, even without being a Doctor - which I am not - hence I think you should seriously push for referral to a BSGE endo centre to discuss this properly.

Private message me if you have any other questions. All the best to you.

[Impatient]

Whoa there -you are far too young -

It's not licenced for use in under 18 year olds with endo ..for very good reason.

It does reduce the density of your bones (which have not yet finished growing) amongst many other side effects - and I am guessing you are coming up to school exams time too - this could utterly wreck your exams.

Side effects can be viscious and also numerous.

Blurred vision

Headaches

Short term memory loss

Itchy Skin

Painful legs and muscles and veins and bones

Nausea

Dizzyness

Hair loss

High Blood Pressure

Depression

Hot flushes and cold shivers constantly day and night

Exhaustion through lack of sleep because of the side effects

Very powerful mood swings [worse than any teenage tantrum could ever give you]

Please don't accept this drug. While it may be suitable for older endo patients who have already had their surgeries and tried all sorts of other treatments it is not a cure for endo, it simply pauses it exactly where it is (meanwhile at the risk of getting whole heap of side effects - which while maybe not as painful as endo can be are certainly not for the faint hearted - there is even a risk that your ovaries never wake up again afterwards).

This drug type is not the answer at your age - not at all.

Even the drug manufacturers admit is has not been tested on children (which you still are in bone growth terms) and nor will it be.

What you need to be doing is finding ways to stop your periods -preferably for some time.

The quicker fix is to take the pill back to back so you don't have a break every month for a period bleed. Instead have a period every 3 or 4 months.

Or have the mirena coil installed - which does take 4-6 months to get working but should then stop your periods for up to 5 years.

This is what I have now got and it works a treat.

The GnRH drugs are a lottery with the odds not stacked in your favour for having a good experience - and the risks of having a bad experience are far too high at your age, plus the impact on the bones which are not yet fully grown. Just avoid it full stop.

Was your consultant a general gynaecologist or an Endo specialist gynaecologist?

They are two different sorts and you really do need the expertise of an endo specialist to remove ALL of the endo, put in barriers to prevent too much damage from adhesions and also sort out stopping your periods so you don't get much chance for future period blood to leak in the wrong direction and get in to your tummy cavity and start nesting there as endo.

I am quite honestly flabbergasted that a consultant would even consider giving this drug to anyone aged 16 for endo. It is crazy and rather terrifying. Please check out your surgeons credentials regarding his/her expertise with endo, discuss it with your GP too, and press for a referral to an endo specialist as Yellow Rose suggested.

It is not a solution by any means - you will be back to square one by the summer and not able to ever take the drug again for endo - accoding to the manufacturers 6 month maximum in a life time is what we endo ladies should experience because of the damage it caues to bone density. To take it again in the future would be entirely your own risk -because you are taking against the manufacturers guidelines.

[LeyaC in reply to Impatient]

I have also been told to use it at 16 (I'm nearly 18 now though) I didn't know it wasn't licensed for under 18's! I decided not to have it and to try for a baby as I am mature enough for that, unfortunately even without the menopausal medication I am infertile and am struggling to get pregnant. I feel if I'd have had it, then I would have had no chance. If I were you ladybird, I would try everything else first, it may not work as well as the menopausal medication but it will help until you feel its the right time to use it. If I were you, listen to everything impatient has said, its exactly the advice you should take, in the end its your decision but now knowing its not licensed for under eighteens, I wouldn't suggest it at all. Hope you can find something else to help.

Leya x

[Belle]

Hello Hun, what a horrible thing to happen to you at such a young age! I'm 28 and last year had to under go a operation for cancer tumours on my ovaries and has to have both my ovaries removed, not having children of my own i found it all abit to much to understand... Unlike you I am now naturally going though the menopause... And you know what it's not as bad as it's mad out, yes it's not the loveliest thing to have to go through but there are treatments you have have to stop some of the side effects which has really help me come to terms with it all.. Also.. Does this defo mean you want be able to have a family of your own ( once the time comes for you) as I even though I've lost both my ovaries I still have my fully working womb, so I can still carry a child would just need a little help on the way with a donor egg?,

Just do what you and your family think is right and I'm sure there is lots of other ladies on her that will give you there advice to.x

[ladybird123 in reply to Belle]

there is nothing set in stone to say I can't have children, but I have now had infected blood in my abdomen on my ovaries and fallopian tubes, an infected fluid around my fallopian tubes, adhesions, endometriosis and now possibly the menopause? my chances don't look high.. but when I do have a period it's always horrendous, so i guess I do still have a chance xx

[Livvyg2bt]

I am 20 and I refused that option as I did not want to risk my fertility you make the choices xxx

[stevieflp]

Hi - I totally agree with YellowRose and Impatient. Definitely ask for a referral to one of the accredited endo centres and see an Endo consultant (gynae who has chosen to specialise in Endometriosis) rather than a general gynae.

GPs tend to refer you to whoever has the title 'Gynae' at the local hospital - but they all have such a wide range of specialisms and some really are 'general' with a broad spectrum of knowledge but not specialising in particular. Best to see someone who has chosen to become an endo expert with up-to-date knowledge and enhanced skills relating to endo. Excision surgery is the most satisfactory way of treating endo at the current time and is not as scary as it sounds and is all done keyhole, same as the laparascopic surgery you have already had. I had total radical excision (all endo removed rather than just patches removed) for advanced endo 3 years ago and I can say I have been really good since, but a specialist will be able to discuss other options with you too.

A book I can recommend is:

Stop Endometriosis and Pelvic Pain by Dr Andrew S Cook (top USA Endo Surgeon Consultant)

Big hug to you and all best wishes to you x x

[ladybird123 in reply to stevieflp]

thankyou so much I'm already with an Endometriosis specialist in Cardiff, so I don't know what else to do, we're looking at other treatments, but otherwise just getting on with it *hugs* xx

[Brownlow in reply to ladybird123]

Hi ladybird123,

I've looked at the list of endo centres including the provisional list and Cardiff does not appear on either. (there's always a chance I missed it!) Did your consultant tell you he was an accredited endo specialist? If so, I suggest that you get in touch with the hospital and BSGE bsge.org.uk/contact-us.php and report him for misleading. Perhaps there are other facts that I'm unaware of or there's a simple explanation for all this but do check out his credentials. He doesn't sound great to me.

Return to your GP and push for a second referral to an accredited endo specialist. You are allowed to choose your specialist on the nhs. There's one in Bristol.

[cupcakegirl]

You are definitely too young for zoladex, but only because it's not licensed for people of your age and they don't know what effect it could have on your development.

Have you tried other hormonal treatments like the pill? Have they worked at all?

Unfortunately adhesions usually return after surgery - the fact that they returned after the first op means they shouldn't really have tried it a second time in my opinion.

I was diagnosed in 2004 at 22 and refused zoladex for about three years as it scared me. When I went on it, it changed my life and I ended up staying on it for two years. When I came off it, I went straight back on other treatments and I continued to have hormonal problems for 4 years, until just a couple of months ago.

Having said all that, I don't know why there's the suggestion of zoladex destroying fertility - there are very rare occurrences of people going into premature menopause, but otherwise zoladex is good at stopping the endo from further damaging your organs, so it usually preserves fertility rather than destroying it. Other than going into menopause, which is incredibly rare (especially on a 6 month course) I'm unsure how else it would affect fertility.

Zoladex can be a great drug which doesn't just pause endo like the pill does, but it also cuts off the supply of oestrogen at the brain, essentially starving the endo deposits and often causing them to shrink. It won't do anything for your adhesions though, so if they're the main source of your pain, your best bet is to take the pill back to back to prevent more from forming.

An endo specialist who specialises in excision surgery is your best bet for both the endo and hopefully the adhesions. They can skilfully cut out the deposits which has a much higher success rate, as laser only burns the surface and doesn't eradicate all of the lesions.

I would definitely ask for a second opinion - when I was diagnosed, I was told that my only option was zoladex and I ended up having a couple of surgeries with a specialist which helped for a while. You need someone who really understands the disease and this guy is setting off alarm bells suggesting zoladex at your age.

I would say it's sad that you've been diagnosed so young but it's actually a good thing - I and many others had endo at your age but it wasn't diagnosed for a long time. If you can nail this disease early, before it infiltrates deeply, you have a much better chance of remission. Wishing you lots of luck

x

[ladybird123 in reply to cupcakegirl]

thankyou I'm with the head of gynae in the Heath hospital, Cardiff now.. so i don't know who could do anything better.. we're still looking into other treatments but I've been on the pill for a couple of years anyway.. xx

[cupcakegirl in reply to ladybird123]

Try to find an endometriosis specialist - I saw one in Oxford, and one in London, I don't know if there are any in Wales but google it and see what you can find.

There are other options between the pill and zoladex, such as the mirena coil and Depo Provera, even if they're temporary until you're a bit older and zoladex is more suitable. Excision surgery by a specialist would also be an option to consider.

Have you tried different pills? I've been on 7 or 8 over the years - some of have been great, others awful so it's worth trying a few and taking them back to back for at least three months at a time. The fewer periods you have, the less the deposits will bleed and spread.

I hope you get some help soon. It's great that you've already been diagnosed - I started with symptoms at 12 but didn't get diagnosed for ten years and by then much of the damage was already done (to my nerves mostly). All the best xx

[cupcakegirl in reply to cupcakegirl]

Sorry, just seen that your gynae is an endo specialist - I still think it's worth a second opinion from another, even if you go privately (a one off consultation isn't too much but get a copy of your notes first).

[kyla78]

My goodness I agree your too young for this! What about trying the mirena coil? Anything but that which has been suggested, is this consultant a gynae? You need a specialist second opinion

[ladybird123 in reply to kyla78]

yeah, I'm with the top man in the heath hospital cardiff, so I should technically be in good hands. But no one seems to remember quite how young I am.. x

[Immunewolf21]

Hi Ladybird23, I also was diagnosed as a teenager and all I can say is it is a good job you know early because as some people do not find out until its too late so do not try for children when they could have. I I was medically menopaused at seventeen and realised that I had never really known my own personality until I came off of it in 2009. I was always not as happy as I thought I should be and constantly ill will colds/chest infections. Anyway I suggest you stay on the combined pill or mirena if it works, it's the lack of oestrogen that causes a lot of problems I think and maybe imbalance affects pituitary/thyroid glands however, oestrogen is what helps endometriosis grow. The good thing about finding out this early is that if you do want children you know to have them ASAP when you meet the right partner xx

[ladybird123 in reply to Immunewolf21]

thankyou, we're still looking at options on what to do.. xx