Banging my head off a brick wall regarding daughter

[Spiritwings]

I feel like I am banging my head off a brick wall where my daughter and her gp is concerned. She's 17 and has suspected endometriosis. She has been on her period now almost constantly for the past year so has seen her gp a lot. Last straw was last week, they are chasing up a gynaecologist appointment for her but finally saw a gp who agreed to b12, foliate and iron blood tests.

She had a phone call the following day informing her that her iron and foliate results are very low and her b12 is low but within range. She has to wait a month then have all the tests again, I fail to see what waiting a month will achieve as someone who has had pa for the past 20 years I can see ALL the symptoms in my daughter and have tried to say this to her gp but it just seems as usual to fall on deaf ears.

I've seen my daughters personality change over the past year from being a fun loving, active teen always out with her friends to being a near recluse and if it wasn't for school I'm pretty sure she would just lock herself away in her room and sleep.

They won't treat her for depression as she's (and I quote) too young but have referred her for counselling but there's a 12 month wait and I can't afford to pay for private treatment as I can't work due to my disabilities. She has the contraceptive implant to try and regulate her periods but it's just made it worse and now they have given her the pill as well to try and "calm things down".

She's due to go on a school trip to France this weekend and I'm petrified that she will end up having to stay in her hotel room the entire time or end up in hospital as she's in so much pain this morning that she's doubled up and the strongest dose of cocodamol isn't even taking the edge off the pain for her. So it's back off to the doc we go.

Wish me luck I think I'm going to need it. Will update once we've seen the doc.

[Gambit62 Administrator]

Totally with you on the waiting another month - have you tried drawing GPs attention to the BCSH guidelines - risks of not treating because results of B12 in range = permanent nerve damage - in the summary - and also the UKNEQAS alert on importance of clinical presentation

bcshguidelines.com/document...

ukneqas-haematinics.org.uk/...

also this list of resources that fbirder put together

frankhollis.com/temp/Summar...

[Lisahelen]

Poor girl, she definitely needs that gyne appt, no wonder she feels the ways she does, having a 4/5 day bleed is bad enough but for a whole year! Her iron levels must be underground, not just on the floor.

[jillc39]

oh poor her and poor you - waiting a month is just gp talk for .move along, What's with these gp's and more to the point what can we do?

[123harry]

having suffered low iron b12 and vit d, l really feel for your daughter at such a young age l can just about cope with all that and lm an adult however when it gets to my periods lm completely flattened your daughter must be exhausted l would try to stay away from anti deps, I'm no medic but I would say shes done in by getting her periods almost constant who wouldn't be, has she been tested for pa, lm fed up with docs so haven't also have you got the actual levels she is sitting at other more informed people on here could help you with them good luck

[Spiritwings]

Hi everyone thanks for all your replies. GAmbit, I have tried mentioning it and just get dismissed as I am not a doctor *sigh* I have also handed information to my gp and left information at reception for the other doctors in the practice but they just don't seem to be interested.

I am trying to get her to get a printout of her blood results as they wont give me any information as she's 17, even tho 9 times out of 10 she asks me to go in to see the doc with her so I can describe what she's like and what's happening etc.

She wants me to go to her gynea appointment with her so I will be mentioning it to the consultant to see if she will do anything for her. In the meantime I've given her some of my b12 patches for when she's in France as she has said she feels better if she uses them. I am also going to mention that to the doc and the consultant.

Unfortunately the doc was fully booked this morning so we didn't get an appointment but she has put a b12 patch on and seems to be feeling much better and there is a definite improvement in her mood this evening and a lot less pain, so I guess I am going to have a bit of a fight on my hands with the docs trying to get her treated, even if it's just a "trial" to see what happens.

I will keep you all updated

Mags x

[Auntyp62]

Hi, when I found out I had b12 def 6 months ago my immediate reaction was to learn as much as I could.....I read books which started me thinking was b12 affecting my daughter and granddaughter, this led to more research.

My daughter has had endometriosis removed 3 times, is 39 with one child she also has had 3 failed I've cycles......she does not drink and is not overweight but has fatty liver disease........she also has an irregular heartbeat......and has suffered on and off with depression for at least 10 years

My granddaughter ( my sons daughter ) is 21.....has recently been diagnosed with endometriosis and has been on antidepressants (which do not work) for 4 years.

my research revealed that each of these things can be related to b12 def and high homocysteine and with the endometriosis it can cause estrogen dominance which feeds the endometriosis

I spoke to my daughter and granddaughter who both have lost faith in doctors and they immediately started supplementing 5000 sublingual daily ( without tests in the belief it won't hurt them or make anything worse)....both improved dramatically within one month and came off all antidepressants and although both still have heavy periods they say the pain is not so bad and they can cope.

I must add that my mother also suffered with endometriosis and depression and I recently had a gene test done which did explain a lot. I am lucky as it seems to have missed me.

[Gb57]

Sounds like you and your poor daughter are going through hell. She has a lot going on I hope you get things sorted for her. Good luck!