Can anyone help?

(28 Posts)
Chatterboxnz Fri 06-Jul-18 05:50:48

Hi. My 13 year old began her third ever period just over two weeks ago and she haemorrhaged with massive clots and bleeding through pads every 10 minutes. She was prescribed norethisterone and was taking it three times a day for ten days.
They have now dropped her to one tablet a day for ten days. She had been taking one tablet a day for 3 days and had started bleeding with some clots again. The first night she woke up at 3am and had bled through everything. The following day she had sporadic bleeding, going from moderate to heavy bleeding. Between 1:40 and 3:30 (when she finished school) she had bled through a super pad, her underwear and shorts). Last night she woke at 5am and had bled through everything again, cleaned up and went back to bed. Up at 7:35 and pad was soaked again.
Her last blood tests have came back OK, her clotting factor is fine. She does have low white blood count and symptoms that would suggest a virus (just typically being unwell). She cut her finger about 12 days ago and bled for 2.5 hours. Doctor thinks that may be unrelated. However her finger did start bleeding again after being at the doctor, with thick blood that slid down her finger.
She was at the doctor again on the same day she started bleeding again as she has been feeling generally unwell. He is doing further blood tests and checking for glandular fever.

Has anyone else experienced bleeding while still on a low dose of norethisterone? She is meant to begin the mixed contraceptive pill after these 10 days. We are hoping her bleeding will settle down before she begins the mixed contraceptive. She also has bad period pain.

Her new blood test results came back within normal range. She is still bleeding fairly heavy and it is day 5 now.

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QueenoftheNights Fri 06-Jul-18 06:50:30

Are you sure they have tested fully for haemophilia? (I know an adult who developed a type in her 80s after a severe virus.)

The clotting factor seems to be the issue. I'd push for a specialist appt because this seems to be a blood disorder, not just related to periods.

Chatterboxnz Fri 06-Jul-18 07:07:28

Hi there, thank you for your response. Her clotting factor is 1 which is exactly as it should be. Over the past 5 days she has had sort of light blood loss then she feels almost like pee is coming out as it just gushes and covers whole pad, going through and through underwear and pants too

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QueenoftheNights Fri 06-Jul-18 08:19:29

But that doesn't explain her blood loss with the cut finger, does it?

My understanding is that clotting is not straightforward and you should push for a referral to a specialist- I don't have much faith in GPs (too many misdiagnoses of people I know) so you really need an expert.

With periods as she has now you need an urgent referral to a good gynaecologist. If necessary and you have the means, self refer and go privately. The Pill may well help and if her periods have been irregular she could have this heavy bleeding. But, I still think you need to look beyond the GP.

Chatterboxnz Fri 06-Jul-18 08:33:44

Thank you. Yeah the GP has very little clue about what is going on. He was looking up stuff on his computer because he had no clue and just ordered random tests, thinking it may be glandular fever etc

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QueenoftheNights Fri 06-Jul-18 08:38:27

Sounds barmy. GP using google to try to understand it.

Can you fund a private consultation with a gynaecologist?

Chatterboxnz Fri 06-Jul-18 08:52:26

The gp said he will refer her if the mixed contraceptive doesn't work. She saw a gynae at the hospital that will take her with referral. Just trying to find answers for her. She has missed a heap of school because of it, which is upsetting for her and she is so scared everytime she bleeds

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bunnyrabbit93 Fri 06-Jul-18 08:58:34

Sorry for your daughter OP. Have you tried speaking to a different GP for a second opinion ?

Juells Fri 06-Jul-18 09:04:15

Nothing to add, but lots of sympathy. Losing blood at this rate would surely lead to anaemia, or is that an old wives' tale?

In all honesty if this was happening to my child with no real help from GP I'd take her privately to a haemotologist, no matter what it cost. Then to a gyn. To anyone I could think of until I got answers.

ChardonnaysPrettySister Fri 06-Jul-18 09:10:23

Tranexamic acid will help with the menstrual bleeding, the finger would worry me though.

Talk to a second GP and repeat the tests?

That’s no way to live for her.

Chatterboxnz Fri 06-Jul-18 09:17:58

I'm from a fairly small city in International New Zealand. It is hard to get in to any specialists. I am trying to get her in to her usual doctor. She has days off as she has a newborn so she is hard to get in to but I think she would be more understanding. It is tough. We don't know what will happen when she comes off the norethisterone and goes onto the pill

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lolaflores Fri 06-Jul-18 09:18:31

Oh the poor girl. It must be so worrying for you all. I have nothing useful to add but it is sounds like you are in a very frustrating situation and because its periods, it gets brushed off.
Wishign you the best.
My daughter started her period at 10 and bled on and off for 5 weeks. I knew it wasn't that weird but it did worry me and it is still taking time to settle. My eldest has had gynae problems for the past few years and it is a slog to get listened to by any GP or specialist because she is 24.
Take care. All the best.

ChardonnaysPrettySister Fri 06-Jul-18 09:22:03

Didn’t realise you are abroad.

You can buy tranexamic acid over the counter here and it’s a godsend when it works.

Chatterboxnz Fri 06-Jul-18 09:25:54

Thanks I will see if I can find some.
The doctor thought the bleeding finger is unrelated and because the hand is quite vascular but I still don't think it's normal at all

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Chatterboxnz Fri 06-Jul-18 09:29:10

I bet that is hard for you all. Two children suffering can't be easy. I think, from what I have found, that bleeding for a long time even if it's just a little bit can be dangerous too as it still drops the iron level. I have been giving my girl extra iron through foods to try and combat that

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lolaflores Fri 06-Jul-18 09:47:08

Chatterboxnz I had gynae probs for decades and it was soul destroying to get it resolved and not for the want of trying.
Hopefully this generation whont have to go through the same crap.

Juells Fri 06-Jul-18 10:01:29

I have been giving my girl extra iron through foods to try and combat that

It's such a worry for you. Hope you find a doctor who can help.

Chatterboxnz Fri 06-Jul-18 23:30:31

lolaflores, it seems to be that a lot of women experience similar, though not to the hemorrhaging extent that my kiddo had. By the look of it, many times the person is just prescribed the oral contraceptive pill to regulate the cycle then sort of brushed off.
The gynae at the hospital took it relatively seriously. She, rather bluntly, told me "oh she is hemorrhaging, do you know that?" Gave her some meds to stop the hemorrhaging and the norethisterone and said to contact the GP and get more norethisterone (down to 1 a day) then the mixed contraceptive and "if all else fails" she will accept my kiddo by referral.
Told the GP what she had said and he had to research what to prescribe her etc. Said he isn't really concerned about it, may just be a rise and fall in hormone levels.

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ImanaveragepersonAMA Fri 06-Jul-18 23:33:51

Sorry OP, no advice but I hope your daughter's symptoms improve flowers

TheWoollybacksWife Fri 06-Jul-18 23:39:22

Does she bruise easily? My sister has ITP and she can haemorrhage badly during a period.

Chatterboxnz Fri 06-Jul-18 23:46:17

yes she does bruise fairly easily. She has never had a nose bleed and they said her blood tests were fine so they ruled out a blood disorder. Is it still possible to have ITP with normal blood disorders? She did have a low white blood cell count but that has gone up now.

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AornisHades Fri 06-Jul-18 23:49:41

Did the tests they did cover Von Willibrands disease? Various members of my family seem to have that.

Chatterboxnz Fri 06-Jul-18 23:51:42

No they haven't covered Von Willebrands disease. I did wonder about that one as I used to get heavy periods (not nearly to her extent) and my mum had issues with very heavy bleeding both in her teens and as she went in to menopause.
I don't know much about it though? Can it be seen from complete blood counts or from platelet counts and clotting factors?

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AornisHades Fri 06-Jul-18 23:57:05

Tbh I have no idea but some family members have periods from hell from day 1 and others bleed ridiculously from a small cut. Not all the women have terrible periods and not all the women bleed badly from cuts.
I've dodged it with genetics from the non bleeding side.

Chatterboxnz Sat 07-Jul-18 00:00:45

It sounds pretty similar. She doesn't get bleeding noses and the Drs kept focusing on that and her normal blood counts as equalling no bleeding disorders.
I don't think it is a simple case of hormones

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