To go to A&E? Please help

[Adviceneededpls1]

I absolutely know I need to get real medical advice and that’s not what I’m looking for here I guess I’m seeking reassurance here.

My DD is 15 and currently on her way home from school with her Nan, I’m on the train home from work and going crazy with worry.

She has had severe heavy periods for a couple of years and has tried mefenamic acid, the mini pill and now the full pill continuous without breaks. She started the full pill in October as she was enduring a 4 week long period. She stopped bleeding for about 5 days and has since been bleeding heavily again non stop for approximately 18 days. She is dizzy, pale, lethargic, complaining of bone and stomach pain. She’s also got clots of blood.

She’s autistic and struggles to communicate pain so when she does I know it’s severe, she’s having paracetamol and ibruprofen every day for pain relief on her tummy. Her recent blood test revealed serum ferritin level of 16 which she has been prescribed a low dose iron supplement for. However the GPs just don’t listen to my concerns, I’m beyond frustrated with their care, refusing to refer her to gynae and not joining up symptoms for example one doctor printed out leaflets on stretching and said that’s why she was feeling weak and had painful bones!

Anyway, I’ve tried to get another GP appt and there aren’t any. What do I do now? My DD is crying in agony, she looks so withdrawn and weak, she has stopped her weekend hobby which was her only real form of socialisation and it’s now impacting her GCSEs. Would A&E just send us away? For context I had a full hysterectomy at a very young age due to severe endometriosis but even that isn’t taken into consideration.

Please help, I think my gut is telling me to take her but any advice to get me through this train journey home would be great!

All such amazing information thank you! The doctor when discussing her blood results said her serum ferritin levels were the ‘low end of normal’ but as soon as I said she has been bleeding for weeks (would have been on her notes) he said he would prescribe a low dose supplement! They clearly thought she had growing pains!

Im so grateful for all your messages and it’s making me feel more confident in my initial reaction to go to A&E. Thank you so much and for the person who recommended emailing myself what a great idea! I become a bumbling wreck in front of doctors so this is super useful! Also I’ll get some snacks and books to hand I feel this could be a long day!

A&E are unlikely to do anything to resolve the underlying issue.

BUT

Extreme pain, lethargy and dizziness are something that should be urgently medically reviewed.

I wouldn’t get your hopes up on gynae referrals etc, but support with symptom management and a check that theres not something else going that this is masking.

I feel for you OP. I hope A&E can help. Sending a hug

Yes, go. It certainly sounds like she could have endometriosis or similar especially with your own history considered. If the GP is unwilling to do anything then you really have no other choice. If they try and send her away without doing anything then kick up a fuss - I know that seems like the wrong thing to do but they really can be quick to send people away without checking anything properly.

My sister had a similar issue as a teenager. She was doubled over in pain and throwing up at one point. My mum took her in and they sent her away claiming she had trapped wind. The same thing happened again shortly afterwards and they basically eye rolled and said there was nothing they could do. My mum refused to leave until they’d done a scan which they did begrudgingly and it revealed a 2 giant ovarian cysts, one of which had ruptured.

Also get graphic with the blood loss quantify it How many pads or tampons, how many leaks of flooding, pain level, remind she is autistic . A and e won't probably do much you also need gynae referral

A&E without hesitation. Poor girl. Hope you get to the bottom of it and she gets some proper care. It sounds like she may be being fobbed off because of her autism and because she is female and because it is a 'women's stuff' issue. If anything else was making her this ill it would be properly investigated.

I'm in full agreement for A&E, it's all over the news about how we are being ignored when reporting pain and heavy bleeding.
My mum ignored my constant heavy bleeding and pain, said I had to learn to live with it as it was part of being a woman until my brother found me collapsed one night. I was severley anaemic and narrowly missed needing blood tranfusions.
Anaemia is still the bane of my life 4 decades on.

Absolutely take your daughter to A&E. 4 week periods of heavy continuous bleeding is not normal, on any level. Of course she's weak and lethargic, I suspect she's low on iron, at the very least. It's not sustainable. She needs an urgent referral to a gynaecologist. I hope you get some answers, poor girl.

I have gone to A&E in your position (for myself, when I was still trying to get a diagnosis of endometriosis) but TBH the best you are likely to get is pain relief and you will have to wait for that as it's very unlikely to be considered an emergency. I never managed to access a scan via A&E. Yes, she quite clearly needs to see a gynae but chances are you will have to go the GP route for that, and everyone I know who has endometriosis is paying privately for their treatment because the NHS waits are appalling at the moment. Expect 12 months plus to see a gynae who isn't an endo specialist and can't help you beyond suggesting the pill.

If you see the NHS GP to ask for a referral, ask for it explicitly, and if they refuse, ask them to put something in the notes saying that they have refused and explaining why, then escalate to practice manager immediately and ask to see a different GP, preferably one with a special interest in female health.

Also be aware (you might know this already) that endometriosis can be tricky to see on a scan because the deposits can be too small, and because the majority of sonographers do not know what to look for.

I'd also advocate for writing to your local MP and outlining the way GP services have fobbed you off. It's disgusting how female pain is so often minimised as 'just' gynae or 'normal'.

If you see the NHS GP to ask for a referral, ask for it explicitly, and if they refuse, ask them to put something in the notes saying that they have refused and explaining why, then escalate to practice manager immediately and ask to see a different GP, preferably one with a special interest in female health.

Absolutely 100% follow this advice from @crazylizardsss It makes me so angry that we are fobbed off with these things. I have a fab GP at my surgery who i will only see as she and her trainee are well read on women's issues. It shouldn't be like that though.

Good luck - poor love - i had this earlier this year so i fully sympathise (my issues were meno related though)

Also, whether you are with the GP or at A&E ask specific questions like “why are you ruling out endometriosis without further investigation. We need to understand why you are certain that further investigation is unnecessary.”

Also say something along the lines of “I would like to make sure that your reasons for refusing referral/pain relief/whatever are fully described in the notes of today’s consultation as I believe this is likely to be an ongoing issue”

Poor girl. I had a serum ferritin level of 8 and I felt dreadful. Wasn't caused by periods but I can empathise.
She needs to be under a gynaecologist.

Can she not take cocodamol (not alongside paracetamol obv) over the counter available cocodamol is still miles better than paracetamol but she should have been prescribed something better for the pain, naproxen perhaps? Then of course it needs to be investigated. Poor girl, good luck x

@WhatInTheFreshHellIsThis aspirin can make bleeding worse but ibuprofen doesn't have this effect, in fact it can reduce the flow.

I know someone who was bleeding like this and when she went to A&E in a similar state she was so anaemic that she was literally in danger. She was transfused straight away. Ultimately the gynaecology referral will have to come from the GP but I would be writing to them and copying in as many people as possible about the disgraceful suffering someone has to endure before being treated seriously.

Could you afford some private care if it was available?

Take plenty of pads of the same size and some plastic bags (and a coloured bag or something). Make a note of the time (with proper pen and paper) each one is changed, keep them and try and insist that they are weighed as that will be real data on her level of blood loss. If there are blood clots in the pad, don’t tip them down the loo. Again, they are evidence.

Such incredibly useful advice here thank you so much! I’m home with her now and she has settled a little, she said the pain has eased off slightly with paracetamol although she’s still very lightheaded.

I decided to call 111 and they have managed to get me a telephone appointment with our GP surgery. I’ve got a script in front of me to prompt me during the call as I am firmly going to request an urgent referral via choose and book for gynae. It’s so disheartening as the GP we have already seen is said to be an advocate for women’s health and is often frequenting the ‘This Morning and Lorraine Couch’ but she is also the one who told me that gynaecology won’t see her until she’s 18, something I’ve since found to be incorrect. In fact all of her symptoms meet the NICE guidelines for a referral. Even after saying she was bleeding for weeks at a time, that she’s weak and it’s impacting quality of life she didn’t request bloods. We had to go back and push for a blood test from a locum GP as we were concerned about her bone and joint pain. Having been through the health system suffering from Endometriosis myself I am just heartbroken that things haven’t improved for young girls and women.

I have found a paediatric gynaecologist who specialises in endometriosis and heavy menstrual bleeding at Birmingham Children’s Hospital which is a bit of a way out for us but I’m more than happy to travel, I’m going to request a choose and book referral so I can select this hospital as the most appropriate. Failing that I will book a private consultation with that specialist and see if she can get us on her NHS wait list.

Thanks again to all you wonderful people responding to this post, I really appreciate it and I’m so determined to get my DD some help.

You absolutely must take her to hospital. Poor girl. Nobody that (or any) age should have to put up with that. Unfortunately, most women and girls are made to think it's normal and it absolutely bloody isn't. I'd see what tests they do and then I would ask about adenomyosis, which it sounds like she has. Do not let anyone fob you off. I hope your daughter is feeling much better soon

Take/show a photo of her from when she wasn't looking grey and drawn, it's hard for them to visualise how much she has changed.

Also adding to PP who have recommended iron infusions. They work like magic.

Sorry, just seen it's a phone appointment 🤦

100% this and video footage too.

She needs urgent bloods done regardless. So she needs to be seen in person urgently. Well done for advocating for your DD.

Male GP is it?

Take her to hospital, by whichever means you can get seen. Unfortunately a long wait in A&E is probably the most “direct” route. I wish someone had taken me at that age. It wasn’t until i threw up then passed out in a lecture when I was 20 that I was taken seriously.

Does your hospital have an urgent care department. At mine if it's not an a&e issue but it's something that really needs to be seen, which it definitely does, we have an urgent care centre to go to. Check online if your local hospital has the same. Hope you get it sorted soon 💐