My 16 year old in severe pain: Hi all i... - Endometriosis UK

Endometriosis UK

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My 16 year old in severe pain

21 Replies

Hi all i need some advice pls.my daughter was diagnosed with stage 1 endo after having a lap in dec 2013.they put her on the contraceptive pill micronor in april.This hasnt helped atall the pain is more severe n she had a period the end of may n is now back on again in worse pain.Is the pill supposed to ease the pain?if so why is it worse than ever? Need some advice pls not sure wat to do.thank you :)

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21 Replies
Clem01 profile image
Clem01

Go back to the doctor & try another pill. She may need to try lots to find the right one for her. Have you guys thought out a coil so woman have amazing stories about how they have helped.

All I want to add is be there for her every step of the way she has a long journey ahead of her. I was diagnosed at 16 & my mum still to this day is the one person who understands & gets it. I'm having my hysterectomy later this year & it's my mum again coming to look after me. She is my rock. Sometimes that support is great pain relief. Also ask the doctor for pain relief something for now & then. Then something when it's really bad or u may end up in A & E a few times xx

in reply toClem01

Thank you wishing you all the best on your difficult journey x

Gemx85x profile image
Gemx85x

Go back the drs and ask to be refered by to gyne and see if they can give other treatments unfort untill u find a pill that suits her pains might be up and down :( x

in reply toGemx85x

Thank you I have called the secretary she is going to arrange appt for my daughter.Wishing you all the best x

Yazza profile image
Yazza

It may be worth trying the combined pill I was on that for years and it wasn't until I had to stop the combined pill that my problems started?

Good luck. X

in reply toYazza

Thank you foryour advice. All the best x

choclovers profile image
choclovers

Firstly what a fab mum! My mum struggles to understand the pain I'm in. In fact I'm just recovering from a lap and is telling me get on my feet, I also know several other women with the condition who feel like they have no support.

I had an op at 17 (now 32), then was put on various pills trying back to back with no breaks and implants. I now have a coil which has helped a little. I agree with the others go back to gp and ask him for a referral to gynae.

All the best to you both. X

in reply tochoclovers

Thank you for your compliment I have to admit it is hard to understand what she is going through but i try my best to support her through it & I hope that even though your mum is not very supportive you still receive all the support that you need.All the best xx

choclovers profile image
choclovers in reply to

Hi Blue15, she's very lucky. It's the eye rolling of surely you can't be in that much pain. Even my partner gets frustrated by her. To be honest, I think it is something we have to get used to with this condition. No one ever seems to understand how painful and distressing it can be. That's having quite a few endo friends I have made.

All the best x

in reply tochoclovers

sorry to here glad you have people in your life that are going through the same thing take care x

Emma-louise profile image
Emma-louise

Hey, sorry to hear your daughters in pain. Ive been prescribed Micronor for my periods too, and it definitely didn't help. I was on it for 2 years, with constant periods and pain every day, and it wasn't until this forum that i went to the doctors to see if t was linked - which it was. I would take your daughter back to her doctor and explain how its affecting her, and try another pill.

I hope she's feeling better soon.

Emma Xx

Thank you for your advice I have requested an appt for her to go back & see the consultant.Wishing you all the best xx

thor32 profile image
thor32

The pill in theory should reduce symptoms as your bleed is not a true period, in that pills stop ovulation. She hasn't taken it for very long so it could be a case of allowing time or if the pill has introduced new symptoms, revisiting GP is worthwhile. They should want to see her after 3 mths anyway to review contraception. X

in reply tothor32

Thank you

piper7 profile image
piper7

Hi there I'm 36 it took me 15 years to getddiagnosed so firstly that's the good thing, however the pill does not help whatsoever. Nhs doctors poorly understand endo. Go to Mr trehan website to get true information. Even with a hysterectomy endo does not go. The only way to get rid of it is via Mr trehan technique. He's the only surgeon to do his technique as the nhs will not fund the training. We need to all write to our mp to fight for this condition to be treat properly instead of the cheaper ways. Stopping your periods does not stop endo either. Print off trehan research and fight. Unfortunately he's now retired nhs and only does private. It's 15000!!!

in reply topiper7

Thanks for your advice I will have a look at his site.All the best

didymus profile image
didymus

Various hormonal treatments (including different types of the pill) do give a lot of relief to some women, moderate relief to others and none to others. It's really a case of trial and error. Did the consultant say that s/he had removed all of the endo deposits during your daughter's lap? The plus side (I know it doesn't feel like it) is that she has an early diagnosis. A lot of women start with endo in their early teens and do not get diagnosed for years. I was 12ish when I had my first symptoms - but I didn't get a proper diagnosis till my 30s. It is often just normalized - particularly if the girl's mother has had painful periods too (possibly undiagnosed endo). So, she is lucky that you are on the ball. I can't stress how important it is though to be seen by an endo specialist. We are not supposed to give recommendations here but if you say roughly where you are in the country and ask people to send you a pm you might get some recommendations that way - but of course do your own research too on any names you are sent. Getting seen by the wrong gynae can result in failed surgeries, inappropriate courses of treatment and a lot of heartache.

in reply todidymus

Thank you for your reply the consultant said they removed all that they could see.I will try & find an endo specialist thank you for your advice.All the best

Jadeeamberr94 profile image
Jadeeamberr94

Hey hun I started around the similar age. Im now 19 I had my first lap diagnosis 4 years ago I've been on several different pills patch implant depo hormonal treatment (danzol)all of these made me bleed heavier and more pain. Nothing seemed to have worked im constantly getting fobbed off with painkillers Im Iin and out of hospital with pain. Im now booked in for my second lap next monday and also to have the copper coil fitted as well tbh its feels like im constantly going round in roundabouts. But hopefully the copper coil works. Sorry but it will be difficult in the future with docs and that cause allI used to get was but your so young xx

sw1996 profile image
sw1996

Endometriosis is triggered by periods mainly. I'm only 18 and like your daughter got diagnosed at 16. Keep going back to the doctors, possibly a&e... I know all the a&e nurses from going in there so often as my pain is so bad! But don't give up.. Keep calling doctors for emergency appointments. The horrible thing with Endo is no painkillers are likely to help the pain which people who don't suffer with Endo struggle to understand. If the pill isn't working try another pill. Best of luck x

sw1996 profile image
sw1996

Endometriosis is triggered by periods mainly. I'm only 18 and like your daughter got diagnosed at 16. Keep going back to the doctors, possibly a&e... I know all the a&e nurses from going in there so often as my pain is so bad! But don't give up.. Keep calling doctors for emergency appointments. The horrible thing with Endo is no painkillers are likely to help the pain which people who don't suffer with Endo struggle to understand. If the pill isn't working try another pill. Best of luck x

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