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.

I've been iron deficient many times and am also constant daily bleeding, as per post above.

I recommend 'Mega Food Blood Builder' Iron supplement as it's gentle on the stomach and it's got folate, vit C and B12 in it.

I also take glugs of Floradex every day and sachets of SpaTone. This keeps me from needing iron infusions - which then make my bleeding far worse, can't win.

Ah the stupid reply button, don't worry OP, it doesn't make sense to me either and I did the same as you on threads before! Silly.

FWIW, I'm a recurrent miscarrier too and I can reassure you, recurrent miscarriage clinic should not have left you to lose weight with no support in the meantime. This just isn't what they're supposed to do! You should've been tested and provided with progesterone/aspirin/whatever it is that you needed medically to help you with future pregnancies, and the stitch to support your cervix too if that's needed. You should've been referred to them after your third loss!!! Your GP and community midwives should've absolutely known this! The guidelines now I think are after 2nd loss, or they're about to change. This is shocking.

How have you never had a smear test at 32?! You are entitled to it and you should've had multiple invitations by now, the HPV test which is new is every 5 years and in the old days the PAP smear was every 3 years. Does the NHS have you registered under the correct name and address? Are you sure your GP practice does as well? I cannot understand how you've slipped through the net for all these years?!

I think it's a very good shout to ask your employer to bring your insurance forward and tbh get a pay rise - you can't be struggling so much with your health and not be able to spend £100 on private appointment asap, you're in a senior job doing shed loads from what you've described?!

Is it the case you're prioritising everyone else over you and people are taking the piss a bit? You definitely deserve better, virtually in every aspect you've discussed. Go for it, girl! You need to look after yourself.

Read up NICE guidelines before liaising with GP or other professionals and go prepared not to be dismissed again.

I would think this is likely fibroids, something to do with the lining of your womb, and any cervical issues must be excluded. You should also be entitled to be referred to a endocrinologist and they should help you with weight management. Good luck, keep us updated and feel better soon 💐 xxx

OP i'm not in your area i'm in Essex but my hospital has a gynaecology A&E. One of your local hospitals may have the same dept. It's worth trying. I had to go there for two miscarriages and women in the waiting room had various gyno related issues.

Mefenamic Acid is an 'NSAID' anti-inflammatory that doctors claim to reduce bleeding. I'm not sure how but it certainly reduces pain. Cannot be taken with any other form of anti-inflammatory (such as ibuprofen).

Tranexamic Acid is something else that's often offered, it clots blood and slows down bleeding. Often doctors prescribe MA & TA together.

For pain, I find the only thing that works is codeine & paracetamol which can be bought over the counter from Boots own brand but does make a person a bit sleepy.

I’ve actually have had Ozempic (not from the Dr 🫣 I bought it a while back after battling with a huge appetite and ballooning) and I’ve never felt better than when I was on it if I’m honest. I lost over a stone in less than a month, only issue was finding a reliable supply. If you do qualify for it from the hospital then I would grab it with both hands. Start on small dosage and just make sure you’re not busy the first day or so, make sure you have sugary snacks Incase you go shakey but after the first day I was great! I drank tons of water and ate small portions of food regularly and was basically just craving chicken caeser salad and Eggs and avacado everyday. Im not a salad kind of girl usually. I had no interest in anything unhealthy whilst I was on it? Not sure if it was mind over matter or just because my sugar levels were more stable but if I could go and buy it in boots I would.

Hi OP, I haven’t RTFT but I had something similar in terms of continuous bleeding & flooding & was diagnosed with simple hyperplasia (thickening of the womb). It has fortunately resolved on its own but they can offer treatment. I would definitely push for a referral to gynaecology. Sorry you’ve been fobbed off, sadly not uncommon. Mine was only investigated as I was in the system having cancer treatment & they thought it might be related. Good luck!

If you also have non alcoholic liver disease there may well be some clotting derangement which might be one of the reasons you are bleeding for so long, looking at the bloods requested I think a clotting check was there, I think you need bloods sooner rather than later.

You’re so lovely, thank you.

No idea on the smear test thing - need to check that out.

Recurrent miscarriage clinic was a really awful experience all round honestly. Some of my losses had been before 6 weeks and they kept referring to them as chemical pregnancies and said they ‘didn’t count’ , so I had to wait until I’d had 3 pregnancies that had carried beyond 8 weeks before they would refer me. That was GP 1, they were god awful.

The problem on the weight loss thing is the advice the NHS gives is so outdated and SO WRONG for people like me, but because PCOS isn’t treated as a metabolic illness, the standard advice is the same diet advice as a metabolically healthy person receives. We should be given the same dietary advice as type 2 diabetics and PCOS should be treated as part of metabolic syndrome but because we’re women, it’s not.

I dropped 7 stone in a year and a half eating low carb but had to stop because of my liver. Dropping weight didn’t help my PCOS. The only other time I’ve lost weight was when I was pregnant. I lost 4st in 7 months because my hormones were regulated by my pregnancy.

It will be because your insulin levels were better controlled and therefore you weren’t craving. Same thing happens on low carb. Ozempic would be ideal for me as it would control insulin without me needing a high fat diet. Unfortunately, I’m not a type 2 diabetic (despite PCOS being a different presentation of the same bloody thing) so it’s I likely I’ll get it on the NHS.

There's no differentiation between a chemical pregnancy and a miscarriage later into the first trimester for the purposes of your miscarriage clinic referral. Your GP and clinic were wrong, really sorry about this.

I had gestational diabetes in my fourth and successful pregnancy and was under the care of specialist diabetes clinic midwives. I also had an appointment with a consultant obstetrician who specialised in diabetes. You should be referred to a specialist gynaecologist and to an endocrinologist on my view.

I’ll ask for a referral to endocrinology too, that’s a good point.

OP this is absolutely awful for you - there is no reason for you to be left without support or a proper plan with that level of bleeding. I wanted to offer a visit to your local GUM clinic - they are run by by doctors experienced in gynae related issues, including heavy bleeding and sometimes have a gynaecologist in the clinic. The link below also suggests them for heavy bleeding. ED also an option, though success here is dependent on the ED department calling gynae in to assess you, or admitting you for gynae review - not as easy to get the right clinician as you might hope it would be and ED themselves probably aren’t going to do loads other than treat your anaemia.

https://www.nhs.uk/common-health-questions/sexual-health/what-causes-bleeding-between-periods/

Thank you, my local hospital is north staffs so I’m not at all confident they’d refer me to gynae from a presentation at a&e, all my previous experiences there have been very much ‘get the bed empty as fast as you can’ and very little above the basics of ‘are you dying? Do you need to stay overnight? No to both? GP referral in the morning off you pop!’

I had the exact same thing, massive flooding and bleeding, saturated everything. It was a fibroid!

I finally had it removed, no issues since and had another baby right afterwards ☺

I hope you're being seen today Op

Op I don’t have any advice on the gynae front. I had a full hysterectomy for a very large uterus with adenomyosis and endo, ovary / cervix removal a few years ago, which was a godsend. But I get this isn’t something you want right now even if offered.

As for weight loss, I’ve had success eating a Mediterranean diet. Perhaps that could be useful for you to try? I find it easier in the summer and my loss has somewhat stalled but I’m maintaining my weight right now rather than losing. In the summer I ate lots of veggies and not so much meat. Plenty of salads. Eg lettuce, tomato, olives, half avocado, cucumber, a small amount of smoked salmon. I eat all of the veg first, then the protein. Vinegar at the start of a meal is good for insulin resistance so I use this with olive oil. Then if still hungry, I add carb at the end - oatcakes - which are unpalatable on their own so I eat these with a chunk of Brie and a few grapes. Intermittent fasting is also great for insulin resistance, eating in an 8 hour window ideally, 10 max. I can’t eat gluten or even gf pasta, rice in small quantities as it make me feel awful. I also don’t eat traditional breakfast, rather one of these meals for breakfast.

I’ve submitted the form and used the phrase ‘I require urgent face to face input from a doctor and require an appointment to be made today due to heavy bleeding, anomalous liver ultrasound results and abnormal blood test results’. We’ll see.

I’ve also submitted a test results form for the liver lesions expressing the same. If I don’t hear from them by lunch time I’ll call reception.

I’ve got an appointment tomorrow at 12:25

Well done OP!!

That's good news OP. Don't hold back in letting them know that it's not just that you are sick of bleeding - it is becoming debilitating and you are also concerned as to the cause.

In reality the cause is probably nothing worrying but Jesus H Christ it is difficult to function as normal when flooding unpredictably.

@Draculaswetdream I don't mean to be crude but when I had my issues and felt ignored I took the clothes I had leaked on to show how bad it was. I don't always think we are taken seriously and it really made the doctor pay attention. Just a thought.

Friend went through this and when she had her next flood went directly to A&E. Immediately seen. Do go

write questions down OP so you don’t forget to go through everything at your appointment. Take note pad and pen with you. Good luck.

You are not alone on the bleeding/flooding front. I don’t have PCOS that I know of but this has been my life on and off since Dec last year.
I seen a GP early in the year and again yesterday… with 1 phone call in Sept but only as I chased everything up. I was referred for a scan in Feb, this is finally happening next week but only after 2 clinician calls from my local hosp to check 1) I still needed seen and 2) if anything had changed. Currently 7 weeks in to floods and bleeding every couple of days - I genuinely feel it’s destroying me!!!
gp I saw yesterday did do an internal examination (cervix looked fine) with that check but she thought my womb was full so she’s assuming fibroids so she chased referral and today I get a call for scan next week!!!
please let us know how you get on with GP at your appointment! Things I’d be asking for - different meds to stop the bleeding (transenamic whatever it is does help me but only allowed to take when it’s my actual period 🤷🏻‍♀️), an ultrasound, a referral to gynae (though my GP said they won’t look at me until I have had the ultrasound so that may have to happen 1st)

Fantastic OP!

I could have written a lot of your post. I am struggling with exactly the same thing - although not been diagnosed with PCOS. I have been bleeding really heavily with clots since the end of August and it shows no signs of stopping, as soon as I stop norethisterone it begins again immediately. This is incredibly unlike me as up until this point my contraceptive implant had stopped me having a period for two years. I was so fed up with it and completely beside myself that eventually I went to A&E and a scan was booked for January. When it got even worse I called the Gynae unit directly to be assessed again and now have a scan booked for Monday. If your bleeding like this never feel guilt for making yourself heard! As a PP pointed out if the blood was coming from anywhere else on our body it wouldn't be ignored the way unexplained vaginal bleeding is and it drives me INSANE. The entire medical field is corrupted by unchecked misogyny and women literally die because of it. Really hoping we both get sorted and that it is something easily fixed!