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 My DD is crying in agony, she looks so withdrawn and weak, she has stopped her weekend hobby which was her only real form of socialisation and it’s now impacting her GCSEs.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

Bless your DD.

I have Pcos and was recently diagnosed with adenemyosis. Also had 2 surgeries for ovarian cysts. I once bled for 3 weeks solid and have always had to wear super tampons alongside tbe thickest pads otherwise I bleed through.

I’ve found in order to get a gynae referral you need to say irregular menstrual bleeding and spotting alongside persistent pelvic and lower back pain. Sometimes you need to lie to get taking seriously. I once went to A&E and really did exaggerate a bit. They reluctantly did an ultrasound and I was on the operating theatre a few hours later for a ruptured dermoid ovarian cyst.

You can get private ultrasounds for around £100. It may be worth considering if you don’t get anywhere with the referral. They’re normally not as thorough as NHS ultrasounds but it does get the ball rolling if anything is discovered and you give a copy to your GP.

I spent all of my teen years with heavy irregular periods and very painful sex. I almost convinced myself I must be a lesbian as I found it so uncomfortable and unenjoyable. It wasn’t until I had my first surgery at 21 for the dermoid cyst (15m so most likely sat there growing for many years) where my years of heavy periods were explained.

Also, Pcos won’t always show on blood tests. Mine were always clear. It wasn’t until my first surgery where they diagnosed it. Since then iy shows up on a transvaginal ultrasound but if your DD is a virgin, they normally do an abdominal ultrasound.

I would take her. My sister and I had this problem (though didn’t get this bad until after children). My sister had to have multiple blood transfusions. I remember I would lie in bed with heart palpitations and twitching legs from the blood loss.

I’m so sorry the medication hasn’t worked. Don’t be fobbed off.

I don't know if this has been mentioned already as I haven't read the full thread, but I take tranexamic acid for heavy periods. I was advised by my GP that mefenamic acid is for pain, but won't help the flow and that you need tranexamic acid to lighten the blood flow. I hope your daughter gets the support and treatment she needs.

No one should have to go through this. It’s awful. The medical profession will minimise it as your poor daughter is both young and female. Don’t give up, keep pushing until you get help.

Since then iy shows up on a transvaginal ultrasound but if your DD is a virgin, they normally do an abdominal ultrasound.

This is incorrect. There is specific guidance for radiographers and radiologists advising them that 'virginity' is an inappropriate reason for declining to do vaginal ultrasound, quite specifically so young women like the OP's daughter can't be fobbed off using this excuse. Similarly, lesbians. See: www.bmus.org/static/uploads/resources/Transvaginal_Ultrasound_Guidance_Final_With_Front_Cover_MesUP8a.pdf

Definitely take her to the hospital. Poor thing. Us ladies suffer so much and get fobbed off too much.

so ferritin being that low will absolutely make her feel crap. Out of breath, tired, pale, shaky, hair loss, just like your body is generally failing and you’re about to die. Malaise. England is awful for treating it - in fact I’m surprised she got a ferritin test as they regularly don’t even bother even if you suffer with iron problems. They just test hb and say oh you’re fine but actually ferritin causes problems too.

Anything below 50 is not optimal. They won’t do an infusion (in England) until you are at 15, I think? If you can bully your way into them referring you to the infusion lot though, then do. GPs are often reluctant but if you can get past them the haematology lot are usually more receptive and the difference is insane.

if you haven’t already, get spatone. It helps get levels up quicker for some reason (something to do with easier to transfer in the body).

does she get enough iron in diet?

Also, does she have any other issues - so chronic health problems, regular illness such as tonsillitis, or gluten intolerance? Sounds a bit mad but when your body is inflamed it can impact your whole system and periods. Sometimes dealing with that can help your periods sort and/or help ferritin and iron levels.

GPs very much live by iron/ferritin levels are what goes in is the only thing that matters. eg if you don’t eat/supplement enough, you won’t have enough. And it is important to do so. But some people have, for one reason or another, issues retaining iron and/or ferritin levels and could really do with infusions when it get lows and investigations as to why they lose it so easily. And it sucks and you’re made to feel like you’re a crazy person who is just lazy and trying to look for reasons that you’re out of breath and feeling like crap instead of just going to the gym.

They will do a trans vaginal scan on a virgin (my dd has had one and an internal examination).

Both my DD’s have issues with heavy long periods, both have PCOS and dd1 possible endometriosis. Dd1 is currently trying the combined pill, dd2 tried the mini pill and she bled non stop and became low in iron. Both my DD’s are autistic too (youngest severely). I myself spent years going back and forth to gynaecology for similar issues and eventually at the age of 42 had a hysterectomy. It’s awful what woman/girls have to go through and how hard it is to get help. I hope they can find something that works for your dd, I was so unwell as a teen with low iron, they only time I felt well was when I was pregnant (when I was 20).

I’m pretty sure I remember the figure of 100 quoted but won’t swear to it. It’s available to listen to on bbc sounds though & was really interesting
the guest doctor is based in Oxford and referred to another clinic in Bath.

I had exactly this at 15 and was FINALLY diagnosed with with endometriosis at 30. It’s awful but with the right gynaecologist there’s lots they can do.

Has she been tested for pcos? It can cause crazy periods. My ferritin is 12 and I have been fine. Some people have low ferritin and are fine.

My ferritin was 2 and my Hb was 78 and I didn’t get an infusion or transfusion. I had a huge blood loss over 3 days and passed out, they stuck me on a huge dose of tranexamic acid on a bed in a&e and sent me home after a few hours with iron tablets.

You do need to see a gynae but even then, it’s often a fight to get treatment and taken seriously it’s not right

If still no joy via GP consider A&E. Different matter but my youngest went through a stage where they were limping and had pain in one leg. GP weren't very helpful and after weeks of being fobbed off I took my youngest to paeds A&E where they did an X ray and referred us to orthopaedics. We were seen a few weeks later and got to the bottom of the issue

I stand corrected! Glad to hear they can be performed on virgins.

@SlurpyMcslurpsonthat is SHOCKING. My lovely, proactive GP just referred me for an infusion, as my ferritin levels have decreased, despite a year of prescribed iron supplements. Unfortunately the hospital rejected the referral, as my haemoglobin is fine (always has been). So infuriating. Not sure what the next step will be.

OP, hope your daughter has been seen by now. Women’s health isn’t taken seriously at all.

Yes, I hope she is okay

@ArielHawksquill

100 wow !
NHS guidelines are much much lower than that
Nice I believe is around 70?

Op this is beyond disgusting I can't believe you've been left struggling with this ! Your poor dd I hope you can get her some help.

Ferritin levels are classed as 'normal' between 11 and 300. It's a bit like Vitamin B12 though, in so much as 150 to 1500 is normal, so 155 wouldn't be classed as low, but it is clearly sub optimal. With symptoms, it should always be investigated. Some other countries have very different thresholds.

'normal' levels are in no way the same as 'optimal' levels.

NICE guidelines are also often different to local guidelines, and GPs are often out of date with the latest guidance (understandable as things change all the time)

My B12 for example as a menopausal woman with neurological symptoms was 155. No action taken. My (then 10 year old) DDs was 100 and she's on B12 injections for life. Such a large range and often the nuance / additional symptoms aren't really taken into consideration until it becomes severely problematic.

I was coming on to say the same thing. I really hope you get the right support but the person ideally needs autism training and asking they have done this (it’s a stat requirement) is a good start.

Does she have an autism passport or similar?

As a fellow endo sufferer who had endured decades of heavy periods with ferritin levels of 3 for 8 years (yeah, thanks GP for leaving me that long) and only discovering that I have endo and adenomyosis at the age of 50, you both have my sympathy. As you probably already know, it often runs in families, my sister and mum have it too.

I hope all goes well with the appointment but if you have no luck there is a really great gynaecologist in the UK who specialises in young gynae issues, she is called Dr Gail Busby and is based in Manchester (sorry if she has been suggested but I haven't read the full thread). I have contacted her myself and she is very helpful. She has several YouTube videos regarding young girls and gynae issues if that is any help to you.

Good luck.

My DD16 has been going through the same for 3 years. We have repeatedly been the GP and to A and E.

A and E just send you through to the GP service on the same site.

DD takes the pill, last 3 years and iron tablets for last year.

Saw the GP again last week. DD had been bleeding for 4 weeks heavily. Big clots, tired, low iron even taking iron tablets. She has been changed to a progesterone only pill to try and stop her periods.

Twice they have tried to refer her for a scan but the hospital refuse it.

Last week the GP advised that they won’t scan because all they will probably find is fibroids. The treatment would be the treatment she is already on. As they won’t operate as she is still so young.

We are seeing a paediatrician in the next few weeks for problems she has had with palpitations, dizziness, blurred vision. So we will also try to discuss the period problems with them.

We have even looked to take her somewhere private but can’t find a paediatrician who specialises.

I hope you find more answers than my DD.

@bouncingbackhome why can't you take her to a gynaecologist?

I am going through this with my daughter. Started puberty at 7, and was told there wasnt anything they could do until she started her periods. She started her periods so I went back and told them hoping for a refferal, and was told that it was too late to do anything because she had started her periods. The pill was offered at age 11 which wasnt appropriate for her.

Shes suffered horrendous acne, is anemic and now on iron. 6 years later and still not a pelvic scan. Is in near constant pain with her bones. Has put on 3stone in weight over a year. Very little energy, pale, tired, struggles to walk far and is in so much pain the next day. Ive had to buy her a stick to walk with and occasionally she will need a wheelchair. Ive had to get her a new bed that she can get in/out better. Periods heavy and painful, and becomes depressed. Usually has at least 3days off a month. Sometimes the whole week.

New gynaecology appointment in December so im hoping it will be positive.

She is also neurodivergent.

Keep advocating you're doing great

Wishing her well in the immediate, hopefully things settle.

Longer term i

Can she have Tranexamic acid to stop the bleeding while waiting for Gunae referral? The tummy pain is probably due to the Ibuprofen & Iron, so I would stop these and slowly re-introduce the Iron in a couple of weeks. There’s a small chance she has an ulcer from the ibuprofen, so A&E is not unreasonable.