Please help me because the NHS won’t

[Draculaswetdream]

I have been bleeding heavily and continuously from my vagina for 40 days. I am 32, I have PCOS and my last episode of continuous bleeding was after my son was born in 2021 and I bled for 16 months non stop. That eventually resolved itself and I fell into normal cycles (35ish day cycles for me normally, period last between 4 and 7 days).

My PCOS does not cause continuous bleeding for me, it causes the occasional very long cycle and sometimes cycles where I don’t ovulate.

I contacted my GP 2 weeks ago and got a phone appointment with a phone GP service a week later which I attended, and he sent me for a blood test because I am anaemic. This blood test has confirmed I am severely anaemic (HB is at 8.1) and yet instead of thinking ‘shit we need to find out why and stop this woman bleeding’ the action plan from my GP has been to prescribe me iron tablets and leave it at that (I am already taking iron tablets unprescribed and have been for 4 weeks because I’m not an idiot and knew I was having a bad period and would need topping up. This was before the period didn’t stop). I also have trans something acid which is supposed to stop the bleeding but I have repeatedly expressed that this is not working to the GP’s.

Today, I very suddenly flooded through a pair of heavy duty period pants and a maternity pad (I wear this combination 24/7 at the moment) and ruined an office chair at work. Totally saturated it and left a saturated patch about 20cm in diameter.

I have been to the GP’s 8 times about heavy periods and twice in the last 40 days, and have not been offered any further investigations like a scan despite insisting this is not normal for me. They appear to be convinced this is PCOS related.

Are there any medical people on here who can advise me how to navigate the system here? It feels like they’re content to just leave me like this but I think something is really wrong with me.

A friend of mine had the same symptoms I'm going back over 20 years ago. No PCOS but the Dr suspected an ectopic pregnancy. A pregnancy test confirmed her suspension. She had to go home and pack a bag for hospital. Within an hour she was admitted into hospital ready to have the embryo removed first thing in the morning.

What's this all about? I don't think I've ever spoken to you?!

Ask for blood tests to rule out a blood clotting disorder. That’s the route I had to go down x

Please keep this to PMs, this isn’t the place, even if it’s come from a post here. This thread is to support OP, please don’t derail it.

Totally feel your pain OP, it’s taken me year to get anywhere with heavy bleeding, I have been to A&E, been back and forth to GP, been given the pill, told to get the coil and 2 years ago had an ablation which I was told would stop it (it didn’t), I’m now bleeding almost constantly and am on iron tablets pretty much all the time. Luckily I managed to get a referral to gynaecologist (which took 18 months) and I am now on the waiting list for hysterectomy.

Don't let anyone tell you that it’s normal to bleed like this, it totally isn’t. Go back to your gp, demand a scan and referral to gynaecology. It could be fibroids or polyps which can be removed.

Just to say when you do manage to get your private healthcare next April

Any medical condition you gave gad investigation for via nhs , it will not cover you for
Even if you take medication for an illness
your not covered

There maybe a clause like
medicine free for 2 years

I was you in my 40's. Metformin helped with the metabolic side of PCOS. A good gynaecologist did endometrial resection which was a game changer for the bleeding and endless cycles. I used to sit on pampers for 10 days. Some doctors see PCOS as a female reproductive organ disease treatable with the pill, when it is not. It is a metabolic condition affecting insulin etc and you need care from an endocrine doctor with a particular interest in it, and teamed up with a gynaecologist who can do a full work up of your anatomy. I was diagnosed with bicornuate uterus and ehlers danlos syndrome which all added to the misery of PCOS, fibroids and chromosome induced lesions (I have neurofibromatosis and sarcoma due to underlying genetic defects). Please demand a holistic assessment to try to get this under control.

I haven't read the whole thread so apologies of already mentioned. There's no chance you're having a miscarriage is there?

I'm another one suggesting you look at Benenden membership for the long term. As previously mentioned they are an NHS top up, not private insurance and you can only access their services if your local NHS waiting list is longer than their threshold. They will take pre-existing conditions, as you can only use the medical diagnosis/treatment after 6 months. You can access the Private GP telephone/video appointment service almost immediately. It's £12.80 a month.

I hope you get this sorted.

When was your last smear test?

Also (again sorry not read the whole thread) have you tried taking progesterone tablets? I went through a period of heavy bleeding like you decribe, I ruined a sofa as a result - progesterone helped almost instantly

Ask about a short course of norethisterone to stop the bleeding and hopefully kick-start a more normal cycle pattern.

This. Be forthright. If everything gp has done is not working and problem persists... insist to be referred. Ask for 2nd opinion and dont be scared to ask for that. You need a referral

It sounds very frustrating. After 8 times I'd be making another appointment with the purpose of a Gynae referral. I'd also be reviewing the standards of what to expect and informing the GP of the distress this is causing to you. I would acknowledge this in person at the next appointment, and then follow up with a complaint to acknowledge your experience and draw attention of the GP.

Sorry I haven’t read the complete thread but it might be worth calling 111, my friend was worried he was having heart problems and called them, they didn’t think it was serious but got him an appointment at a clinic straightaway to get seen to to be on the safe side.

You may not get a face to face within 3 weeks but should get one. Hopefully you are able to take combined pill and fast start that while awaiting uss.

Mirena coil can help lots depending on what your family planning situation is

A and e probably won't help unless you are fainting and need urgent fluids. They won't do the scan there

Good luck x

It’s really not just women - it’s all a shambles. A good friend of mine waited ages to be referred for a testicular cancer scare - he had to nag and nag endlessly before anyone bothered even checking him over.

You do not need to have completed your family to have a Mirena. DSis and I both had them whilst nulliparous.

It's recommended that you have one child first because they have large frames and getting them past a nulliparous cervix without local anaesthetic is the kind of agony that will have you screaming and have panic attacks later on just thinking about having your next one fitted. I would insist on cervical anaesthesia if you get one, parous or not.

If you can afford it I would advise getting a private GP appointment and ask for an ultrasound. Sounds like you may have fibroids but could be a number of other things too. I'm so sorry you are experiencing this and not being helped by GPs. If you cannot afford a private referral i would make another GP appointment and ask directly for a referral for an urgent ultrasound. I have decades of experience with a long term condition and I eventually figured out the best approach with GPs is just to tell them exactly what I wanted from them rather than going in with describing my symptoms and waiting for them to decide a course of action or fob me off. I have gone into appointments and said thing like, using your case as an example of how direct I have been,

"I'm here as I would like to be referred for an ultrasound scan to get to the bottom of what is causing this prolonged and extremely heavy bleeding. The treatment prescribed is not working and I want to understand WHY this is happening and rule out anything serious/sinister that may be causing this. It is having a serious impact on my quality of life and is affecting my ability to maintain my employment as I have been flooding right through 2 heaviest flow forms of protection and ruining my clothes and chairs at work. The psychological impact is also beginning to take its toll on me, not to mention the anemia it is causing. I am so desperate to get to the bottom of this that I have been looking into how I could afford a scan privately. Please help me as I can't go on like this any longer."

Might sound dramatic or overly assertive but I honestly have found that this approach is incredibly effective. And there is nothing in that example that isn't true.

Best of luck. I really fell for you x

@Draculaswetdream this is absolutely dreadful that it is accepted that you are to just carry on like this and just take iron tablets. I bled continually for 127 days (kept a count as otherwise the professionals would question it) this was during lockdown. Had frequent floods, one day it poured out like I was weeing …….. in the corridor of the school I work in 😬 blood results were 6.1 how I functioned I’ll never know. Had a little procedure to remove fibroids and this helped.
please ask for a second/ third opinion.

I've not spoken to her in PMs. I've searched her name and I've not spoken to her on any thread, this is the only one she posted on and I hadn't seen it before I searched her name. I was just baffled.

I would definitely go to A & E if I was continually bleeding from anywhere and GP was no use. Don’t wait just go. Your gp sounds diabolical. Best of luck xxx

I was prescribed Mefanamic Acid for extremely heavy periods. Apparently it reduces the heaviness and length of periods. It did absolutely nothing in my case though. Total waste of time. I haven't look for any research though to see if there is any data on its effectiveness.

I hadn't even realised it was a painkiller. GP never told me that so I've learned something new today!

This thread just confirms why the NHS system, in which the GP is the doorkeeper to specialist referrals, is ridiculous.

I also have PCOS and also have experienced the constant bleeding. Eventually gynae prescribed a short course of Provera progesterone which temporarily stopped the bleeding and helped me fall back into a normal cycle enabling me to do IVF and have a baby. Subsequently, I have had two pregnancies and each has correlated with a quick weight loss of ~10% of my body weight within a few weeks. This might help too while you wait for some more helpful help if you have weight to lose. It's totally shit and exhausting and I really feel for you!