Are there any teenagers using this site w... - Endometriosis UK

Endometriosis UK

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Are there any teenagers using this site who have had a laparoscopy or waiting for one?

17 Replies

My 15 year old daughter has been suffering with the symptoms of endometriosis for a year & a half now.She has tried the pill and provera & had to stop because she got really bad side effects.The consultant then wanted to put her on the injections which cause artificial menopause. I refused she is too young !! We both want to no for sure if she has endometriosis before we look at other types of treatment.The consultant agreed & she is on the waiting list.As you can imagine she has alot of mixed feelings about this.Any advice please & my heart goes out to you all dealing with this awful disease.

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17 Replies
JEWELS profile image
JEWELS

That's awful .. They shouldn't be doing this unless she has been diognoised.. I would ring the consultants secretary weekly as push for the lap.. If no joy go through PALS via Ur hospital they will help you.. Hopefully if the nip it the bud and treat her quickly if she has endo.. It will minimise her symptoms xxx

in reply to JEWELS

Thank you for your reply I am hoping that she will be able to have it done privately in the next 6 weeks

MeganBee profile image
MeganBee

I agree, pester the secretary to see if a cancelation comes up to get a confirmed diagnosis sooner.

I am shocked they would offer the artificial menopause to a girl so young, I myself felt at 25 I was too young!

Have you heard if or looked into the "Endo Diet"? I myself found a dramatic difference in my symptoms just by cutting out wheat. Some people take it more extreme levels than others but it depends what works for your daughter. The main advice is to cut out wheat, dairy, sugar, alcohol & caffeine.

in reply to MeganBee

Thank you for your advice I will check out the endo diet it will be hard for her to give up sugar lol

Hello I have had endometriosis since 14 I was diagnosed at 19 I also have pcos and now possibly adenomyosis. When I was younger I wasn't diagnosed early enough and over the years endo got worse

Now im 22 and I have pain on a daily basis Its highly unlikely I will ever have children natrually and I have had two laparoscopys soon to be 3, I never had the hormone treatment because I didnt know I had endometriosis now im seeing a fertility specialist I never dreamed of having a baby at 22 but this is whats for thr best for me, id rather now than never basically what im saying is everyones different and your daughter might not be like me I have stage 4 endo but its got worse. If I could of known when I was 15 I would of considered the hormone treatment because it could of helped me. You seem like a good mum and its lovely you are there for your daughter to help her make the right decisions when I was 15 I didnt have my mums help she didnt care so I just thought id say im sure your daughter is very thankful.

in reply to

So sorry to here of all your going through.I hope things will get better real soon don't give up.Thanks

For the compliment I try my best im sorry your mum didn't care but be strong

ljc88 profile image
ljc88

My endometriosis started at 16 I believe I was 18 when I finally got diagnosed I would push for a laparoscopy before any treatments it's better to know what you are dealing with before taking this and that x

in reply to ljc88

Thanks for that I totally agree

Beau83 profile image
Beau83

I can sympathise. I had a terrible time of it as a teenager and went on the pill at 12 to try to help. You are in a good position though as my symptoms were dismissed as 'bad periods' or 'PCOS' or 'IBS' so many many years- it took until I was 28 to get a lap & diagnosis for my endometriosis. The fact that someone has recognised it is endo is great, and she can get treatment while she is young so it doesn't spread for years undetected.

There are several options other than the pill or menopause inducting drugs. A good surgeon to remove the endo and clear any adhesions is the first step, then perhaps she could have the mirena coil fitted during surgery under general anaesthetic? Doctors traditionally didn't give coils to women who hadn't had babies but it is now encouraged to treat endo/ manage symptoms as it can be used for 5 year periods. For me it completely stopped my periods and made my endo pain much more manageable. I would have gone on the coil at 12 if I was offered it, it would have saved 17 years of agony!!

There is also therpay/pain management classes/groups that you can go to to help deal with the psychological impact of pain.

Or of course you can try the endo diet.

The right pain medication will also help.

Best of luck to you both x

ljc88 profile image
ljc88

I have got my second lap next week very nervous but cannot wait to get seen x

Chrissie66 profile image
Chrissie66

Those GnRH drugs (the 'menopause' injections) are very heavy duty, and I'm not sure that prescribing them to a 15 year old who already appears to be in hormonal turmoil is the best idea, BUT they are often used as a diagnostic tool where endo is suspected before putting people through what may turn out to be unnecessary surgery. People who react favourably to it in terms of their symptoms getting better are likely to have endo although that is a sweeping generalisation and it certainly doesn't work that way for everybody.

Also, the 'menopause' is temporary and except from in very rare cases everything reverts to 'normal' once the drug is stopped and out of your system.

I think the word menopause is very emotive but I've had at least half a dozen 'menopauses' in my lifetime. It's all part of endo's rich pattern, unfortunately :(

I hope they manage to sort your daughter out sooner rather than later

C xxx

in reply to Chrissie66

Thank you for your reply

kyla78 profile image
kyla78

Has she been tested for pcos? I have this and endo but at least pcos can be diagnosed with a blood test

in reply to kyla78

No she hasn't thanks for your advice

kyla78 profile image
kyla78 in reply to

Your welcome

minnie71 profile image
minnie71

Hi my daughter is 17 and has had major probs and heaving bleeding since her periods started aged 13. Docs always said it would settle down and that it was because her hormones hadn't established themselves yet. Only now r they taking her seriously because last year I was treated for severe stage 4 endo after being told for years i had IBS. Now we have been told that it is a genetic thing, it all makes sense. She has very heavy bleeding and without help would bleed most of the time. Currently she is on iron tablets to help with that. She recently started with a gynae who has been great. She has been on cerezette for over a year without a break but that made hardly any difference. In the 3 months preceeding her gynae appt she keep at diary and it was worth it's weight in gold!! She bled for 35 days out of 90 even tho she wasn't meant to have any periods. The gynae then decided she should also take the Depo injection and combine this with the cerezette and trial that for 3 months, which is where we currently r. She is still bleeding, even tho it is now what u would prob consider normal periods. She has alot of bloating, cramping and digestive complications (the same as me). Recently the hosp did an ultrasound which showed nothing, but that said.. mine showed nothing and so did the MRI. Her next appt is in Dec where she will c the gynae, who has already advised us that if she hasn't managed to stop the bleeding by then (which we haven't), then a lap would need to b done. I think GnRH treatment is quite the last option, I am 42 and have just started on this last week. I am currently awaiting my hysterectomy to treat my endo (can't come soon enough!!). So far the GnRH is working great for me, but whether it is going to stay this way I don't know.. I think the other lady suggested trying the mirena coil which would b more suitable for her age, but completly agree too that they cannot start treatment as heavy duty as GnRH without having a firm diagnosis and having exhausted all other treatments 1st. Feel free to mail me if u have any other questions. Good luck xx

in reply to minnie71

Thanks so much for replying. Sorry to here abt u n ur daughter. Hope things get better for u both very soon.

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