To go to A&E? Please help

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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 My DD is crying in agony, she looks so withdrawn and weak, she has stopped her weekend hobby which was her only real form of socialisation and it’s now impacting her GCSEs.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!

Keep and note each pad starting from now. Keep them in the freezer if you have to, until you can put them in front of a doctor (as well as an unused one for comparison).

You want hard data.

Regardless of the gynae referral, your daughter needs a blood test. My teenage daughter had a blood test recently with a ferritin of six and within a couple of days we were able to get an iron infusion under the NHS in the urgent care centre. She almost fainted on the road so it was very dangerous.

It’s actually a female who refused to refer our DD and is the advocate for women’s health. She is a lovely woman and super polite but she clearly doesn’t take the time to actually listen unfortunately.

I am still waiting for the call from our surgery so I will see how that goes and should we get no suitable response I will likely take DD to A&E. It’s just so difficult with the Autism side of things as she appears stoic even when in a lot of pain. When she was 10 her appendix burst and it wasn’t until they actually burst she told us she was in pain and that she’d been in pain for days! She also broke her arm at school when she was 6 and didn’t cry at all, she needed surgery and everything but just appeared fine so sometimes I think it looks like I’m exaggerating. You can clearly tell she is pale though and tired. Good idea from someone to take a picture with me of how she looks when well! I’ll do that if it comes to visiting the emergency department.

Hope the GP appt is helpful. I think 111 was a good decision. Her situation isn’t life threatening but does need dealing with. Ferritin of 16 is low but not that bad, they aren’t going to recommend an iron infusion off the back of that to counter what someone said above. She does need to be taking iron supplements once a day with orange juice. No need to take them more often than that as you don’t get any better absorption but they can worsen constipation. I think your plan sounds a good one. I hope they will do a referral for you.

My Ferritin level is currently 22 and was told by dr last week they won’t give me anything for it. I feel truly awful all the time so have sympathies for OP’s daughter and everyone else in the thread who has been even lower!

Maybe you could call 111, explain she has been bleeding for this amount of time and looks incredibly weak and you need to get to the bottom of it (I would suggest advocating firmly by expressing how serious the situation is). They might be able to book you in with someone at the hospital so you don't have to wait as long.

I agree this is urgent but you need a gynaecologist not a foundation year doctor covering a&e who will just be triaging and discharging to GP care.

Unless you can get a referral to the hospital gynae clinic this week (your GP picking up the phone and expressing the concerns) I would be paying c.£180 for a private appt with a local gynaecologist - one with an NHS practice locally so you can transfer to their care on the nhs.

Ohh bless her sounds very similar to me when I was younger. I never had regular periods and it was one extreme to another meaning I would bleed constantly for weeks/months. My mum did take me to the drs but they where reluctant to do much. I also visited a&even a couple of times because my period was so heavy and painful. I did have an internal scan when I was 16 but didnt show any cysts. So brushed off and told to come back when I wanted a baby. Anyways fast forward to 25 still irregular and I went to the GP as I knew I wanted children. Referred to gyno scan again showed no cysts but I was dignoised with pcos. Due to weight issues, facial hair and irregular periods. I would definitely keep pushing there is medication to help and tbh its just not very nice to bleed like that. Will your daughter use a hot water bottle? I hope she gets some relief soon x

Oh that sounds like an awful ordeal and it’s horrible to think so many young girls are going through this. I’m glad you eventually got a diagnosis. Yes she has a hot water bottle glued to her, she’s asleep now with one bless her. The doctors have called and said she has an out of hours appt this evening so at least she will be seen then.

OP, I just want to send you a hug and say you're doing a great job. Also, you've had some brilliant advice. I have a 14 Yr old Autistic daughter who has had period issues since age 11. Tranexamic acid didn't work, but thankfully, taking back to back combined pill has largely stopped her issues, so we have been very lucky there. She's still anaemic, though and has many other health issues. Our GP is usually good, but the last time we saw her she was really dismissive and that's properly fucked up the trust we had taken years to build with the GP.

Good luck with everything going forward. Your daughter is so lucky to have you x

Low ferritin and low iron unfortunately make bleeding worse. I was like your daughter and needed iron infusions. The crappy pills she’s been given will do nothing. She should have been referred! The pill has always made my bleeding worse too. Ibuprofen is not recommended by my drs due to increased bleeding. Ask if she can be checked for any bleeding disorders too as some women end up diagnosed with low platelets or Von Wildebrand. I

That’s good. If she is dizzy from blood loss she needs to be been seen in person. If she has poor inteoception then it’s really important you stress this to the doctor so they can’t understand the seriousness of the situation.

I am probably autistic and I have two potentially serious situations ignored by medical professionals (gall stone stuck in bile duct and serious post op infection which endes up as spesis) because of poor introception meaning I don’t feel things the same way and high masking skills meaning I presented as not as ill as I wasz

Ah thank you for the lovely and kind words, they mean so much. I’m sure you understand the challenges of hormones mixed with autism during these difficult teen years. I’m sorry your DD has been through this too. I totally understand what you mean about the trust issue with the GP and how easily it can be broken. It sounds like you’ve been an amazing advocate for her and been her pillar of strength. I’m assuming your poor DD has symptoms from the anemia that are difficult for her (and you) to manage! Sending lots of love and thanks again for such a lovely message!

She has my sympathy as I endured this for years until I had a hysterectomy the thing is, A&E will not scan in my experience. Having attended them multiple times with horrendous bleeding they just give you tranexamic acid

If you can afford a gynaecologist I would recommend this. There is usually a paediatric gynae locally (most are 18+) the advice they give over that of a GP is uncomparable simply so much better!

Late to this but hope you opted for A&E. My DD is also ASD and has similarly bad periods though not, thankfully, as bad as your daughters. She should not be in pain and needs a gynae referral. Her low ferritin level is likely a direct result of her continual periods.

Furthermore a Cambridge uni study from 2023 suggested that there is significantly higher incidence (or diagnosis) of endometriosis in autistic young women so they need to investigate the whole person - ie her period issues and pain the light of her ASD, not as a separate issue.

Good luck today.

This happened to me, I collapsed in the waiting area, I’d gone into shock from the blood loss and I ended up in resus, this is why I always advise people who are bleeding heavily to get checked out urgently.

I hope your DD is ok, OP 🌺

Ask them to consider prescribing a ppi (e.g. omeprasole) to protect her stomach if she is taking paracetamol and ibuprofen all the time for pain relief. Might also need a blood test to check the painkillers aren't causing more issues.

You need to be asking for full hormone screening - this is her body’s way of saying something is not right. You want to get to the bottom of that not just masking the symptoms with drugs.

i appreciate you want to help her in the immediate term but you also need to find a female health specialist to work on the underlying causes and I don’t think you’ll find that at a&e

Take her to A&E. It's ridiculous that you have to do that, but her GP obviously isn't responding adequately to a pretty serious medical condition probably because it's linked to her period and there seems to be a prevailing view that women should just get on with it. I had similar issues a few years ago and a few things have helped me:

• tranexamic acid prescribed by my GP which reduces bleeding, taken daily whilst I'm bleeding
• spatone iron supplements taken religiously in a glass of orange juice every morning, and I take double whilst I'm bleeding. I couldn't stomach the tablets, but this has helped me build my ferritin store up from a similar level to where your daughters are, to a level where they are healthy and that has reduced symptoms such as fatigue which makes pain easier to deal with, and I generally seem to have fewer aches and pains
• vitamin d supplement daily, because most people in the UK are low and it can help your body regulate hormones and cope with pain
• omega 3 supplement daily (I take the boots vegan one because it doesn't have a fishy aftertaste) because it lowers inflammation so can help control the aches and pains.

I had to work most of that out myself, and I am still waiting for investigations to find the root cause of my menstrual issues but this can be a long road so it's good to have coping strategies in the meantime.

I'm sorry to read that you're encounting the same issues as I did, but with a child as the patient :(

My "Women's health specialist" GP was frikking awful and just kept pushing a mirena coil or nothing. I didn't want a coil, and I had a feeling that my menorrhagia was from having taken hormonal birth control for decades then coming off it, so I didn't want a hormonal solution, much less a long term one that they would be reluctant to remove. It turns out that I was right, and mine resolved by itself with some supportive practices I found from facebook groups.

Suggestions from me:

Remember that iron is notoriously hard to absorb and also likely to cause constipation or an upset stomach. Take vitamin C with it to aid absorption, and read up on iron uptake inhibitiors, and avoid them at the same meal times. The flavoured Spatone water has vitamin C added to it, but check the packet for how much it contains - IIRC an adult woman needs 3 sachets a day just for a maintenance dose.

Red meat with vitamin C containing veggies is a really easily bioavailable form of iron for her body.

Flaxseed, edamame beans and tofu contain phytoestrogens, which can help to regulate estrogen.

Ginger can help reduce period bleeding. I took juice shots because I like them anyway, but you can buy tablets or add to curries.

My strongest advice is find a good qualified herbalist who has experience working with women's hormonal health. Mine prescribed me a general daily tonic, and separately shepherd's purse, which is used to stem bleeding. I only needed the latter in very small doses to completely stop the bleed at the end of my period, and it was an absolute game changer in terms of getting my periods back onto an on/off pattern again instead of the tap constantly on. Some people take black cohosh, and St Johns Wort is another - but get proper qualified advice.

You've had some great advice here already, but as you mentioned the stoicism your daughter shows it might be worth asking GP and any other healthcare professionals who treat her whether they have done the "Oliver McGowan Training" it might be a useful prompt to remind them that not everyone presents in quite the same way

Go to A and E , mother's instinct is always right.

Are you sure it's period related and not bowel related. Children with autism are at a higher risk of IBD. She would probably be losing weight though

have they said WHY they won't refer her to a gynae.

Often some birth control intensify your periods especially if your body doesn't react well to the hormones.

You have to keep pushing, go to a&E maybe they can give her an iron infusion and then again asking for a gynae referral