TimetoMuskup said "I went to the GP so many times it became a joke"
There's something comforting in knowing that there is an army of women going through the same thing out there.
There's also something absolutely infuriating about it.
I've been talking to lots and lots of women going through endo, fibroids, and menorrhagia. And this story is repeated over and over and over again. Women tell me they've been back to the doctor 10, 20, 30 times and primary care are simply refusing to intervene. These women are not only suffering to the point that work is almost impossible (some aren't just having periods but bleeding constantly), but their mental health is suffering, and their sexual relationships are under severe strain too. It's incredibly frightening not to be able to stop bleeding. I do not believe that it is either caring or humane to leave women in this state.
This cannot be right.
I believe that the only way to correct this is for us to get together and demand that the NICE guidelines are followed in a reasonable timeframe by GPs. That means trying front line treatments like the Mirena, hormonal pills and then moving on swiftly if these don't work to look at surgical options. Women's iron levels and general health should be monitored properly, because there is tale after tale of people collapsing because of the very severest anemia. I have also personally experienced (and heard many other cases) of women being given very misleading information about those surgical options to put them off.
I honestly believe the only way to get proper treatment is to arm ourselves with factual information (knowledge is power), and to be as bolshy as hell about the fact that something needs to be done in the primary care setting. To achieve that, we also need a resource where women who are going through this can talk about it privately with one another, share their stories and what works for them in terms of management, and encourage one another to keep fighting. I'm hoping to set up a website focused just on heavy bleeding as a symptom that will provide this.
Some info that I found out that might help others:
For anyone bleeding out of cycle: you should be given a cervical sample test. This should go into the symptomatic programme - it is not part of the screening programme. Many GPs are failing to administer these smears at an early stage - and this is a big factor in late presentation of cervical cancer cases.
It's normal to be STD tested on first presentation. However, it's not normal for this to be repeated over and over and over again, and no other treatment to be offered! If you're stuck in this cycle (as I was, and several other women I know), demand that you are given further treatments.
There are TWO drugs that you can take together to reduce flow. Tranexamic acid and mefanamic acid. You can't, however, take the latter with ibuprofen. Together they do provide quite a lot of help, and it's worth asking your GP for both.
The Mirena coil works really well for some women. For others, it doesn't even put a dent in the problem. It's important to realise that this treatment can take some months to work, so you need to be patient. However - and this is another thing that makes me cross - I know of several instances where a woman has tried it for a year, found it not to be effective, and the GP has refused to remove it. I find this outrageous - it should be a woman's choice what happens with her own body.
To anyone with fibroids: you do not have to suffer. There are now very light, cheap surgical removal methods that are fertility-preserving involving very brief use of a morcellator to remove them.