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 My DD is crying in agony, she looks so withdrawn and weak, she has stopped her weekend hobby which was her only real form of socialisation and it’s now impacting her GCSEs.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

Take to A&E. They will assess for any urgent medical treatment that needs to be done now. Scans and tests etc. Maybe a blood transfusion. I suspect if safe to discharge her she will leave probably with a referral to gynaecology in place.

Your poor daughter 😔💐

I can totally empathise. I was exactly the same at her age. Irregular but excruciating and heavy periods. I would lose huge purple blood clots. I was always off school and college due to being in constant agony and exhaustion.

I’m 32 now, and still fighting for a diagnosis of endo. As I have every single symptom. I’ve got adhesions and a large ovarian cyst and on the wait list for a second laparoscopy. My first laparoscopy was performed by a general gynae who gleefully told me “no endo seen” and told me to see a psychiatrist. I was heartbroken because I know there is something wrong and I’ve suffered since I was 12 years old.

Keep on being your daughters advocate! It seems like you’re doing an amazing job at it❤️ and I’m sure you know from your own experience not to take “no” as an answer and please don’t let anyone fob you off, always make sure you see an endo specialist or a consultant with a “special interest in endo”. Women’s health isn’t taken seriously and it’s infuriating.

Wishing you all the best and I hope your daughter gets answers and the right treatment soon.

My dd had very similar symptoms repeatedly from the age of 11 or 12 until she was finally diagnosed at 19 with mild Hemophilia A. She saw a series of doctors and specialists over those 7 years. They mostly told her it was normal for her age and to power through it etc. etc. They did eventually test for PCOS and endometriosis. She missed school, was exhausted and had depression, anemia and low ferritin amongst other symptoms. The interesting part is that her pediatrician did actually run a bleeding disorder panel a year before she was finally diagnosed, but didn't take her off the pill before doing so. A year later a young female OBGYN straight out of medical school took her off all the hormones for 2 months before running the bleeding disorder panel and that's when the Hemophilia A showed up. Apparently the birth control hormones mask the results when you have mild Hemophilia. I recently read an article that says that 1/3 of adolescents with unexplained heavy menstrual bleeding turn out to have a bleeding disorder!

DD's is mild and is treatable with being on the pill and Tranexamic acid, but most importantly, DD knows why this is happening AND can take precautions if she is going to have a hemostatic challenge (like having wisdom teeth out or giving birth or another surgery). She also wears a Medical Alert bracelet in case she is in an accident.

If I was in your shoes absolutely I would go.

your GP is a <very naughty swear word>

Yes take her. I ended up needing a blood transfusion when no one would deal with my periods properly when I was a teen.

OP can you ask them to try Transexamic Acid? I have endo and the mefenamic is for pain and transexamic will shrivel (hopefully) the period up. They gave me transexamic before I had my laparoscopy to confirm endo and it did help the heaviness just not the pain as much.

Poor girl, so sad shes suffering so badly. Also keep on at the Dr's. keep trying different ones.

She is a lovely woman and super polite but she clearly doesn’t take the time to actually listen unfortunately.

My DMum advice after many years of such HCP is to have a printed out bullet point list - read it out and then hand it over.

I've tended not to need to hand over the list but clearly have one with bullet points seems to focus their minds sometimes.

I hope you get it sorted - I had decade and half of bloody awful heavy periods that were a nightmare - got pg and didn't realsis I was in labour till about 10 cm when MW came round to check - everyone said braxton hicks were like period pains turned out my regular period pains were like active labour on plus side labour was quick for me.

I don't think A&E would be an over reaction here either if GP are not any more helpful.

Take her in. My DD had a full blood transfusion during her first period

Oh bless her, poor thing. You must be so worried. Take her, op 💐

A tens machine can be surprisingly effective for the pain. The wireless ones are good - about £80 on Amazon. Takes the edge off and gives me a bit of control.

Oh your poor daughter.

I also had months long periods, heavy and awful from a young age. I went on the pill when I was 12, but the pill never helped. And neither did GP's. After bleeding for 8 months in my late teens I was finally referred to gynaecology, but they couldn't find a reason so was discharged with a "oh well".

After having babies I got a Mirena which made everything better - I still bled, but not overwhelmingly so. All the Doctors said this should have been discussed with me when I was a teen! So, it's something to think about.

Anyway, to cut a very long story down - in my late thirties, in a random chain of events, they found out I had a (not rare) minor blood clotting disorder - so I didn't clot properly and was the cause of my awful awful periods - Von Willebrands disease. So if they can't find a cause, do suggest a referral to haematology to check for this, as hideously heavy periods with prolonged bleeding, is often the only symptom in women!

Oh God OP I hope she is ok.

My GP was the opposite with DD. She started her period late and they were awful like you heavy etc. second period equally as bad, phoned GP and nice receptionist made an appointment with a certain female GP.

I think DD was 15/16 she said right 6 weeks plan - menfamic acid and back in 6 weeks and tell me how you get on. It improved but months 4 with periods (second with menfamic acid) it didn’t and DD was distraught and couldn’t work and back to GP.

GP then put her on continuous pill. To stop them and said it was a possibility she had endometriosis (I have it and my mum had it and my gran had it) both gran and aunt died from cancer of the uterus. And she stopped DD periods and DD has the number for a clinic in our local city if she bleeds heavily open 9 am to 4 pm - no appointment. If she had a break through heavy bleed she went there but the pill seemed to stop it and now 4-5 years on and it seems to be working. DD has had two scans on womb, ovaries etc and GP insisted just to ensure everything was normal and no fibroids etc

I have to say I was impressed with the GP and said to my daughter
This is not your fault. This is not normal. We are not in medieval times we have medications and options and I refer you to gynaecologist and it is a wait but meanwhile we do this and this. She was great to DD and also at making her feel heard. DD did go back a couple of times to see her at 18.

I don't think you'd be wasting time in A&E at all, but I'm not sure there's a lot they would do. Your daughter has a complicated situation going on which probably requires a gynaecologist to figure out. A&E are unlikely to have a gynaecologist at their beck and call, so you'll probably end up waiting for hours in A&E to be told that you need to push your GP for a gynae referral!

Hey, sorry to hear about your daughter. I would also go to A & E - I suffer from really heavy periods and have to take iron and tranexamic acid (not sure if she’s allowed to take this but it’s worth an ask). Sending solidarity & best of luck,

If you were bleeding constantly from anywhere else you wouldn’t think twice about A and E. Please be firm and get help for her.

It’s just that they will not investigate a root cause in A&E they will just treat the immediate presenting issue, if it’s severe anaemia they will give medication if it’s bleeding they will give pain relief and clotting meds. A&E is not the place to seek a diagnosis for a long term condition it’s to get immediate treatment. They will send you back to GP if she’s not in any danger. I’m not saying don’t go, I’m saying don’t get your hopes up on this. Having been left on a bed covered in blood and wee for hours in a&e I can’t say it didn’t still take 5 years to get sorted out

they will not want invasive investigations on a young girl which is why they try medication first.

Good that your dd is now settled and sleeping. While I absolutely understand your concerns A&E is not the place for period problems no matter how severe.

I see you have rang 111 and have an appointment later.

Going forward ask for another gp and push for a gynae referral. Don't take no for an answer.

100 ?!

God I never knew that.

Any idea where they got that from?

I've just floated around the cusp of anemia since I was a child. It never occurred to me what a normal person would be.

I've just taken what the GP says that once I'm just about back over the threshold again I'm not anemic so that's not a problem.

I thought 16 was hunky dory!

Sorry my previous comment was really unhelpful.

My experience with A&E for Gynae is that they take forever and couldn't do much in A&E except give pain relief. But because I was reviewed by a consultant I got bumped up the list in that he raised my urgency rating and they called that my initial triage wait, so I had less long until they'd actually give me a proper appointment.

It was still 8 months... but better than 18 months.

Hope your daughter gets the help she needs. Must be awful for you both x

18days!

Even if that wasn't making her unwell it is surely unacceptable & needs looking at?

Unfortunately my experience with a&e for similar was to be told I need to manage my periods better by a male doctor. It took me years to even get a scan. Then i got the most amazing GP (also male) and ended up getting all the testing I needed along with a diagnosis.

Please take her- advocate for your child as I’m sure you have done already. She might benefit from some traneceximic acid iv along with some fluids. Write an account of symptoms and timelines as well to provide as thorough a history as possible (flow, clots, size of these, length of bleeds, frequency of changing pads/tampons, feeling dizzy, nauseous, breathlessness which is a red flag,etc) as it’s easy to forget something when you have a distressed child to also deal with. Stress that she is vulnerable due to her autism, and you are concerned about her safety, not many clinicians will overlook this hopefully. Also, Jess’s rule, recently published, is about how multiple presentations should be reviewed for safety as well following the tragic death of a young woman so don’t be afraid to stick to your guns and push for a gynae referral if you think this is warranted for better management of her symptoms. Best of luck.

I really hope you get the right support for her. Has she tried tranexamic acid to try and control the bleeding while you wait for diagnosis?

I've been bleeding heavily for 7 months (every day and at times unable to get off the toilet and losing dozens of cricket ball sized clots).

All A&E ever do is control the bleeding with IV tranexamic acid and send me away to await another appointment with a GP.

It took me 4 months of daily bleeding and an emergency admission to hospital to even get a referral to see a gynaecologist.

I apologise for making such blatantly sexist assumptions. I do however really hope your DD gets the treatment she needs asap.

Just on a side note, I haven’t had a period since I had my contraceptive implant so this might be an option (you can take her to the local sexual health clinic which I prefer over the GP).