AIBU to think the NHS is failing women? TMI warning

[Beachmum23]

Sorry this is a long one. I have polycystic ovaries and have had heavy periods since I was 11. I have never received much help for this despite numerous trips to the doctors over the years.

Since autumn last year I have had constant bleeding all the time. It varies in heaviness, but I usually have to wear around 3 night time pads at any one time. 2 to 4 times a week I will feel a heavy clot come out and I know I'm in trouble. I will pour blood for hours soaking through clothes in a few minutes. It is mortifying. I live in a small village and I have several times been caught out whilst outside.

As soon as this started I saw my gp who referred me for a investigations at the hospital. They found nothing wrong but said it was my PCOS, nothing they can do.

This has now been going for 8 months and has a massive impact on my life. I have to cancel days out, activities, trips. I have no idea how I will cope when I return to the office. Last night after bleeding through my 4th night clothes for the night despite wearing 4 heavy pads I emailed my GP begging for help and stating if they can't resolve it I want to be referred for a hysterectomy.

This is not the first time I have not received treatment. It took 7 miscarriages before they would even refer me for investigation to discover I had PCOS. My PCOS causes hair loss again nothing they can do.

I know so many women with gynaecological conditions that are just being fobbed off and it has a massive impact on their lives. I appreciate we are in the middle of a pandemic but this predates covid.

God that sounds awful. I have PCOS too but different symptoms.

Whether or not the NHS fails women, it is certainly failing you. That's really terrible about your miscarriages.

It sounds as if there have been no suggestions at all about treatment?

Have you completed your family? If so, endometrial ablation is the way forward. You don't need a hysterectomy. You also need a GP who knows what they are talking about. And yours very clearly doesn't. There should be a GP at your practice who specialises in women's health.

The mere fact that the medical industry gives no fucks about furthering knowledge and treatment for many illnesses only experienced by woman is an absolute disgrace Imo.

You're absolutely right that you have been failed here. It's not acceptable that "nothing we can do" was the answer. You can ask the consultant you saw for a 2nd opinion and if they say no you can ask your GP. Is there another GP where you are registered (you said you are in a small town so perhaps you need to go to another surgery). It's definitely worth pursuing another opinion. What's happened to you is not ok.

@LadyGAgain

Have you completed your family? If so, endometrial ablation is the way forward. You don't need a hysterectomy. You also need a GP who knows what they are talking about. And yours very clearly doesn't. There should be a GP at your practice who specialises in women's health.

Thank you. I have been to numerous GPS and consultants at Womens Health. I will mention this at my appointment today.

@maddening

The mere fact that the medical industry gives no fucks about furthering knowledge and treatment for many illnesses only experienced by woman is an absolute disgrace Imo.

Totally agree. So much research is done on white men with zero fucks given around women or ethnic minorities as it’s “complicated”.

I’m so sorry OP you sound like you’ve been utterly failed.

The NHS has always failed women and we are conditioned to not make a fuss or be awkward, it's almost as if we're afraid we'll get even worse treatment if we upset the GP's who gatekeep our access to specialists.

My advice is to make a fuss, accepting the abysmal standard of care your GP is currently offering is not getting you anywhere and your periods are seriously impacting your quality of life, it's not just one of those things you have to put up with.

It took me 25 years to get a diagnosis of endometriosis and if I could only back now I would be much more insistent about referrals and investigations. Be the squeaky wheel until your GP decides it would be easier to refer you than keep seeing you for the same problem. It's shocking that my own experiences have made me think this is the best option but being patient and reasonable doesn't work.

I wouldn't blame the GP, LadyG, they referred her to specialist which was completely appropriate. I'm surprised the gynaecologist is putting it down to PCOS and unable to help, firstly the symptoms are not typical of PCOS which usually causes infrequent periods rather than heavy prolonged periods and increased hair rather than hair loss, secondly there's lots of alternatives to hysterectomy they could try like endometrial ablation (if family complete) or mirena coil and even medications to reduce amount of bleeding. Hopefully your GP will be able to push for further action. Sounds awful.

It’s a disgrace. I wish we could self refer to gynaecologists. Currently trying to get a face to face gp appointment for a gynae issue, and getting through the new post-covid virtual doctor questions is a nightmare. Firstly a million coy questions ("is your problem ‘female’ in nature?")
Still followed by a load of questions about digestion . Then moving on to questioning whether I "usually feel anxious about my health before menstruation".?!?!?! Seemingly implying I simply have period pains and a bad case of pre menstrual hypochondria.
Why can’t we have gynaecology services we book directly with ? (That aren’t just sexual health services ) . Perhaps it’s because the Nhs realise that the amount of women that would come through with unresolved issues arising from poor aftercare post birth would overwhelm the system.
It’s a scandal.

It’s a scandal.

It sure is.

See also the thread yesterday on doctors performing barbaric procedures on women without anaesthesia.

Yes. The only reason the NHS functions at the level of spend it has is because the GP is the route in. I am conflicted about that because I don't necessarily think direct gynae care is necessary, and I believe in generalist routes to help direct traffic, but the amount of effort it takes to be seen at all and to get anywhere is an increasing problem. Services other than emergency services are definitely much worse because of Covid and that's going to be the same for a long time, but 'worse' in the case of gynae services is fairly terrifying given how thinly those services were spread in the first place.

@Sexnotgender yep the medical researchers constantly sit in meetings pondering 'how can we improve the health outcomes of white men to the detriment of all other humans' Get a grip!

My husband virtually gets a medal for contacting our GP - they phone him to check how he is and are proactive with test results and what have you. Me? Nothing. Made to feel like a bit of a nuisance and never get any kind of follow-up.

It's a women thing.

Women's health is, and always has been, ignored. Tests are based on men. Drugs are tested on men. Everything is male-centred. Women are viewed as a-typical. As though we're not over half the population, right?

Don't get me started. I am so sorry that you are experiencing such a shitty service.

Thats sounds absolutely awful. GP should definitely be taking it seriously and offering treatment.
How old are you?
Ive always had heavy periods ( when not on pill) and in my mid- late forties stated to get exceptionally heavy bleeding similar to what you describe , it is debilitating.
I was offered a uterine ablation where they remove lining of the womb , very simple operation, it really works and ive had only very light periods since however you cant have anymore children once you have had it.
I was also offered a coil as alternative to operation and was prescribed medication whilst i waited for operation which helped a bit but wasnt eliminate it totally.
Definitely go back to your GP and keep asking for help, its shocking they dont take this seriously.
Can you try another GP in your practice,tbh it might even be worth considering changing GP practice.

My husband virtually gets a medal for contacting our GP - they phone him to check how he is and are proactive with test results and what have you. Me? Nothing. Made to feel like a bit of a nuisance and never get any kind of follow-up

Exactly the same here. Recently they rang (!) RANG (!) him.about an overdue diabetic appointment and he jokingly said 'you sound like my wife'. And it was all 'rightly so'

I can't get near my GP. Apparently my menopause suffering can wait.

OP I'm sorry you're suffering like this, it sounds absolutely horrendous. Have you tried using those tena pants rather than pads. They might give you a bit more time to save your clothes. I'm so sorry.

I would go back to your GP, and say you want a referral to a different gynaecologist for a second opinion (you are entitled to this on the NHS).
When you see the new gynaecologist, say that you have severe menorrhagia and want to discuss endometrial ablation (if you do not wish further pregnancies).
It will be harder for them to fob you off if you go in clued up on your treatment options.
And google menorrhagia treatment before you go!

My daughter is a doctor who specialises in women's health. She has spent many months training and paying for courses herself and lobbying parliament in order to be able to help the many women who are suffering. However, despite the obvious need, the powers that be have told her there's no money available to fund women's health clinics. Don't always assume it's the GPs that are at fault.

Many gynaes will still recommend a hysterectomy without exploring the other options for menorrhagia (heavy menstrual bleeding) which is such a horrific condition for women who suffer with it. Plus anaemia etc. It's not ok. Push hard OP. It is 100% not acceptable for you to have to live like this. Especially as there are options - none of which end with you bleeding like this. If, after proper exploration a hysterectomy is required, have a laparoscopic vaginal hysterectomy and do not accept anything else. Women have suffered too long in a system that's not geared towards us.

@Hesperatum

My daughter is a doctor who specialises in women's health. She has spent many months training and paying for courses herself and lobbying parliament in order to be able to help the many women who are suffering. However, despite the obvious need, the powers that be have told her there's no money available to fund women's health clinics. Don't always assume it's the GPs that are at fault.

Your daughter sounds great. And of course it's more complex. But the vast majority of GP's are not properly trained in women's health (over 50% of our population) which is why a PP waited 25 years for an endometriosis diagnosis. It's why a friend of mine was put onto anti depressants and thought she has early onset Alzheimer's when she was in peri menopause. It's why women suffer day in day out with gynae related issues which affect both physical and mental health. There's not enough funding in the system for anything really but why does women's health (did I mention more than 50% of our population) is consistently down graded and de-prioritised?

@Sexnotgender

It’s a scandal.

It sure is.

See also the thread yesterday on doctors performing barbaric procedures on women without anaesthesia.

I read that thread with my jaw on the floor. I had no idea.

This one is sadly too familiar from years on here. Best of luck OP, I hope you manage to get some treatment. It is a scandal that so many women are left to endure this.

100%.
The DIL of a colleague is currently in hospital waiting for a hysterectomy and bowel resection which will result in a stoma.
She is 32 and has been properly failed.
She phoned the gp for an appointment 5 weeks ago, was diagnosed with a UTI and prescribed antibiotics over the phone, told she needed laxatives when she couldn’t open her bowels and finally was admitted to hospital after 2 lots of antibiotics.
Her whole life is beyond fucked because a GP suggested that she was wiping herself the wrong way after using the toilet

@LadyGAgain

Have you completed your family? If so, endometrial ablation is the way forward. You don't need a hysterectomy. You also need a GP who knows what they are talking about. And yours very clearly doesn't. There should be a GP at your practice who specialises in women's health.

Thanks so much for this. I have called and insisted on being referred this morning . There is a 6 month wait list so they have added me to another wait list for a coil in the meantime but at least I am on the waiting list.

@Mydogisagentleman

100%. The DIL of a colleague is currently in hospital waiting for a hysterectomy and bowel resection which will result in a stoma. She is 32 and has been properly failed. She phoned the gp for an appointment 5 weeks ago, was diagnosed with a UTI and prescribed antibiotics over the phone, told she needed laxatives when she couldn’t open her bowels and finally was admitted to hospital after 2 lots of antibiotics. Her whole life is beyond fucked because a GP suggested that she was wiping herself the wrong way after using the toilet

Wtf? That is horrendous! The NHS are absolutely appalling at dealing with "women's issues".

That's brilliant news OP. Good luck!