Hi, I just wondered if anyone might be able to give me some advice?? My 14 year old daughter has suffered from incredibly heavy, painful periods since she started aged 11. She went on the pill last year which helped a bit but around 6 months ago she kept getting (what we thought) were recurrent UTIs/agonising back pain/pain moving her bowels, very painful periods, fatigue etc. We’ve been to the docs a number of times but I don’t feel like we are really getting anywhere (although they did prescribe iron tablets in Dec which have helped with her fatigue). At the latest visit today I queried whether it might be endometriosis but the GP said it’s unlikely to be the case, and also that a specialist probably wouldn’t do a laparoscopy on someone so young as it’s unlikely to show anything up if she’s only been menstruating for 3 years. Instead she wants my daughter to do a bladder diary for a week as she thinks her symptoms might be connected to that. My daughter was in tears when we left as she feels like no one is listening to her and I feel like I am hopelessly letting her down by not advocating strongly enough for her (I find it so difficult to stand up to professionals!). Any advice on what we should do? We will do the bladder diary as instructed but I’m slightly at a loss as to where to go from here if this doesn’t provide any answers. It’s awful seeing my daughter so upset and in constant pain.
worried mum: Hi, I just wondered if anyone... - Endometriosis UK
worried mum
Sorry to hear that you feel like no-one is listening, you and your daughter both deserve to be heard during such a difficult time. Would you be interested in extending your concerns to our nurse lead helpline?
Our nurses provide up-to-date clinical information which will help you better understand your options moving forward.
To get in touch with one of our nurses, you can either send your query via email for a written response within 3 - 5 working days to nurses@endometriosis-uk.org or alternatively you can book a call to speak directly to one of our nurses.
endometriosis-uk.org/nurse-...
I wish you both well and hope this helps!
Oh thank you so much. Getting in touch with one of the nurses would be so helpful, I hadn’t realised that was a possibility, thank you!
No worries & you're always welcome☺️
This also might be helpful while you wait to speak with someone menstrualcyclesupport.com/c...
Wow that looks really helpful, thank you so much. I will find a quiet time with my daughter to take a look at it together. I really appreciate your responses today, they have helped enormously when I was feeling at a loss after the docs this morning.
Hey there, it's nonsense for them to say it couldn't be endo, it could be anything but all of us with this started symptoms at different points and I had them as a teen just got gaslit for yrs about ibs. Struggled with infertility and now need surgery but I had to force referrals from gps! Could have been avoided. Best of luck
This is literally what happened to me when I was her age. I was sent for an ultrasound once but nothing came of it as my results were normal.I was diagnosed with endo at 29 after going back all the time and being put on lots of different contraception over the years. I apparently have minimal endometriosis but extreme pain. Some people have lots of endometriosis with no pain at all and don't know they have it.
The reason I was finally taken seriously was because my dad thought something was wrong (I was at a family function and couldn't stop the pain so had to pace around and wiggling my legs). He didn't come with me I just told the GP that my dad thinks something is wrong. It still took a few years due to waiting times and such but finally I have my diagnosis. Still struggling with pain but it is what it is.
My advice would be to keep trying. Keep a diary with your daughter of her pain even if it's a simple as just recording pain happened. Track her period as well endometriosis tends to have a slightly shorter cycle than the average. Meaning we get them more often and have pain more frequently due to that also.
Your doing what you can do try not to be too hard on yourself and see if you can get a referral to a BSGE endo specialist if you check their website they tell you which hospitals they are at. I have read on here that they can apparently diagnose from scans rather than surgery.
Maybe check out endometriosis UK or show it to your GP as it has useful information.
At the end of the day I hope you find answers for you and your daughter be it endometriosis or something else.
Definitely sounds like endometriosis, my daughter suffered 10 years of being miss diagnosed, that journey stated with an ultrasound in a maternity clinic to try and shut me up when she was 14. You have to keep pushing!Tell your GP and the practice manager you will make a complaint to CQC if they refuse to listen to your request for a referral to gynaecology. Your daughter might be asked to have a vaginal scan, if she is still a virgin refuse and ask for an MRI with contrast. She probably has pain passing number 2s because the Douglas pouch has adhesive endo tissue restricting movements.
Unfortunately most GPs do not want to listen to mere patients.
my daughter is 16 so I understand what you are going through. You need to push for an ultrasound and/or MRI and see if they show anything. If it is possible to go private for those it may help push things along. Good luck, this will be a constant battle for you I’m afraid.
hi
So Sorry you’re daughter is suffering
My daughter is 13 and the past 12 months have been a nightmare she has finally been listened to she suffers with very heavy bleeding / pain and migraines/ headaches ( but guessing the headaches are due to being anemic)
GP would just recommend paracetamol but I have put my foot down as it’s effecting her life now. They have put her on tramexamic acid, beta blockers and iron tablets - she has noticed a difference with bleeding since being on tramexamic acid it’s not as heavy at all, she has a review in a month with Gp - they did offer her the pill but because she is regular I didn’t want her to go down the hormonal route just yet.
I wonder about endo as I have it and I suffered the same since a teenager - I’ve actually been advised hysterectomy recently after laparoscopy.
It’s so worrying as you don’t want them to suffer - as they’re still young and growing till 18 they wont do keyhole diagnostics but they can still do scans etc so keep pushing for something - I hope you get some answers/ help for your daughter 🤞🏻
Hi i think that's nonsense, now i have nit watched the program but it was featured on Waterloo road on the bbc programme, a student there was in agony in regards to her periods and this was in connection to endometriosis. Could pals possibly help if you got in touch with them. I'm so sorry your not being listened to, and they are being so dismissive of your daughter, i too find it hard to speak up to those in the medical department but i did start too, we have a right to proper treatment. I went in twenty seventeen and gave up. But three years ago I got so bad with my bleeding i went back, thankfully i saw someone else who actually took the time to get me the proper tests x
Oh and sending big hugs to you both ❤️🤗
Hello weetabixfringe Sorry to hear this.
My periods started at 10yrs. Equally I suffered.
By the time in my 20yrs I was stage 4.
Doctor cannot refuse if you ask for a referral to see a Specialist. If they do then change doctor.
Firstly go online, find a local Endometriosis Clinic, the name of the Specialist there. Then the referral to that person, at that Clinic.
The problem is a child can have difficult periods, also their body is still growing, they can't take pain.
Can your doctor prescribe Pontan 40 painkiller to help?
Online there's Belladonna (as below) which will help with cramps but you as with the Ponstan 40 or Ibuprofen you have to be in charge of administering.
Get a TENS machine to get the pain if the above does not help with doctor etc. It can only be used when you are awake.
Try backpain setting but others maybe preferred.
Eletrods on the sides of pelvis not near the pain area. Start at say no. 3 once the brain registers it turn down to 2 o1 this should reduce the pain or eliminate it within 5-10 to mins.
It must be very worrying for you.
My best
Thank you all so much for such helpful and informative replies. I’m so saddened to hear the difficult journeys you’ve all been on, but I’m incredibly grateful you kindly shared your experiences with me with a view to helping my daughter. It is enormously appreciated ❤️
Gynaecology specialist
Daughters symptoms are back with a vengeance 😩
Lap op tomorrow 
Unbearable pain and no diagnosis 
