Daughter's pain

Hi all,

I'm writing to ask for help.

My daughter is showing signs of having endo but after seeing our GP and consultant at the hospital we have been told that we have to wait for 6 months of her taking the contraceptive pill before anything else can be done.

In the meantime I'm Fed up of taking her back to the GP with pain. She has, today again, been sent home from school. She is constantly crying and is so depressed.

She is taking codeine, paracetamol, ibuprofen, transamic acid and malfamic acid (not sure of spelling sorry) for pain.

She is again crying tonight and I feel helpless, how can I help and what's best for pain relief for her :(

She's 15 xx

14 Replies

  • Maybe the pill will help her. Sometimes it is advised to take it continuously with out stopping to have a period. That's what I did and it stopped the pain. i was told it was safe to do that.

  • She has been on the pill for 5 months now, she has been taking it continuously for just over a month. Since then she's bled for 14 days, she stopped bleeding 2 days ago and has been in constant pain since x

  • May be that she has not been put on the right pill. I went through the same trial and error hell after a laparoscopy failed to help. Tried 4 different pills before finding the right one for me. 6 months is a bit long though. I was told 3 months and you know more or less instantly if something working or not. I ended up getting quite irate with my GP practice over it and they changed me to Mercilon which helped me a lot. I really hope your daughter improves soon. So young to be going through all of this x

  • Also this is quite helpful endometriosis-uk.org/pain-r...

  • Hey hun I'm sorry to hear about your daughter, I feel her pain as I was only 15 when I started with chronic pain the best thing I found to help was a hot water bottle and lying in fetal position, I was 19 when I got my diagnosis It took me a year to get referred to a gynea and even then they wouldn't give me a lap untill after I was 18 as they tried all different pills and other treatments 1st I really hope she doesn't have to wait as long as I did if the pain gets too much for her take her to a&e they might help with the pain as they might give her something stronger xx( If I was at drs I was in a&e)

  • Hi I had the same with my daughter at 15 she was told to try this and that for months she missed so much school I had to home teach her as no support was offered from school because endeo is not known to the school so she did not fit in the bracket for help !! My daughter was depressed I booked a private appointment with the gynee doc he saw her and she went on urgent list with nhs for lap at age 15 half she had endo stage 2 he lazered it away and fitted her with mirena she then had more pains with her mirena and her body rejected it so she's back on the pill now she has pains on and off but never as bad as before she's now nearly 18 and waiting for her next appointment with gynee on nhs .

    I've suffered all my life with endo had hysterectomy at 35 now 7 years on endo is back attaching my bladder and bowels but I've had 7 years pain free :-)

    Were both waiting to see gynee now for this uncontrsble disease

    There is a helpline on the endo site that you can call they are fab for support I would just say demand to see gynee your choice on your daughters care keep pestering and shouting at them

    We used alternative therapy which helped acupuncture and raki anything to ease this awful pain good luck to you both xx

  • Thanks all of you, I feel a bit better after reading your comments. I will just continue to support her emotionally and hope it gets sorted x

  • Sorry to hear about this! I know exactly how she's feels!! I'm 21 and have been dealing with painful periods since the age of 13! I tried every single contraceptive pill out there, and none of them agreed with my body! most of them made me sick! I was then put on a contraceptive called the 'nuvs ring' it's a like a rubber ring which you just insert yourself every month, this was the only contraception that kinda worked for me!

    So, back on to her pain, after 7 years of going in and out of the doctors and being admitted into hospital with them thinking that I was having an appendicitis or there was something wrong with my bowels, I was finally diagnosed with endo in March last year. The doctors kept telling me that I was 'too young' to have endo and that it is simply just 'painful periods'! due to this over the 7 years, I am now dealing with a serious case of endo, being on my period for at least 23 days and being off for about 8/9? I'm still waiting on treatment, and I completly understand the pain she is going through! But I must admit, the pain does get worse as she will get older and the endo grows (if that is what is wrong). The only reason they found out what was wrong with me, was because I was taken into hospital with severe pain and they found some ovarian cysts, If it wasn't for that, I would still be undiagnosed and given the label that I'm 'too young!'

    I really hope that she doesn't have to wait as long as I've had to and I'm still having to, to get treatment! I'm in my final year of uni now and I find it so hard to even concentrate with the pain, so I'm sure she's feeling the same, especially since she will have her GCSE's soon! You really need to emphasise the pain she's in to a doctors or at a&e and its not normal for her to be in pain!

    I hope you get answers! :) xxx

  • I was also 14/15 when mine started, I was given the pill as well as I was told I was to young to have endometriosis and so it was just bad period pains, bare in mind, to this day Iv never had a period! I had my first lap at 17. The only way I could maintain the pain was hot water bottles, curling up and crying because nothing stopped the pain. One of the things iv learnt now is diet is majorly important! Maybe play around with what you eat, iv gone gluten and wheat free which has slightly controlled the pain, while having the merina coil and a mini pill.

    Double check the mini pill your daughter is taking doesn't have any eastegyne in! That's one of the pain hormones that causes the pain. And if she's in that much pain, a trip to a&e is never a waste of time! It shows the seriousness of the situation and how much pain it actually causes!

    Good luck and let me know how she gets on xx

  • Make sure the pill is progesterone only.

    Has she had an ultrasound to check for ovarian cysts, fibroids, polyps etc? The GP can arrange one, if not... It's worth checking.

    She could come off the ibuprofen and mefenamic acid and try naproxen mixed with co-codamol. Naproxen worked better for me than ibuprofen or mefenamic acid when the pain got worse, but I'd often have to add co-codamol if it were the severe pain. Naproxen can be taken daily to manage chronic pain so that might work for her with school etc, rather than allowing the pain to build up and then trying to calm it down.

  • Hi hun,

    Pain relief wise, things such as ibuprofen are a no-go because NSAIDS (non-steroidal anti - inflammitories) can make things worse. I've got stage 4 endo, pcos, adenmyosis & adhesions, & they've given me a huge cocktail ofpainkillers (paracetamol, co-codamol, codeine, co-dydramol, tramadol & morphine) which I use depending on the severity of the pain. It sounds like it might be a good idea to ask for morphine for when she is in really bad pain, as it will help alot. Also, plenty of hot baths, heat packs, hot water bottles, microwaveable heat bags, & some stuff called tiger balm red really help :) xx

  • Hi - I'm so sorry your daughter is suffering so young but it does mean you can find the best treatment for her before she has years of inappropriate treatments by unspecialised gynaecologists. A lot of us had endo in 'the old days' and had no power but you do now and must use it. Please have a look at the link below to the NHS NICE guidelines for GPs for treatment which states clearly at the outset:

    'Consider referring all women with suspected endometriosis to a Gynaecologist to confirm the diagnosis by laparoscopy, and for consideration of medical or surgical treatment. In particular, offer referral for women with unconfirmed endometriosis if:

    The woman wishes for referral.

    She has severe or longstanding symptoms.

    She has concerns about future fertility, or is having problems trying to conceive.

    There are abnormalities found on clinical examination or pelvic ultrasound scan.

    At the bottom of the section you will see that it advises that if there is no improvement on meds after 3 - 6 months then she should be referred, so your daughter qualifies on grounds of time on meds and severity of symptoms:


    When it says 'gynaecologist' read 'endometriosis specialist' and ensure she is seen by a 'proper' specialist from the get go. Click on my username and read my post on how to access a specialist and look at the links at the bottom about your daughter's right to a second opinion and to see a specialist of her choice. You might also find my post on endo and its symptoms useful.

    Take some time to read through all of this information and take copies, highlighting all the relevant details so you can go back to her GP and insist on referral to an endo specialist. x

  • Hi again - I just spotted that this is for females from 16 onwards. How long is it before she is 16? I don't know why this should apply as it seems irrelevant when she is in so much pain and can only end up costing the NHS more letting it get worse. I should ignore that for now and if she can stick it out for another month to comply with the 6 months your GP has said, then take a copy of the list of specialist centres to him/her and request a referral.

  • She is 16 in December, thanks for the information though I will read it and go from there x

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