Consultant has refused urgent referral as urgent

[itsgettingwierd]

I'm absolutely sat in tears this evening.

I've been having heavy periods for many years. Originally first 2 days were awful but manageable and then had 7 days of tapering off.

December 2019 I started the mini pill but they got heavier and longer until they were every day and had a northisterone and tranexamic acid.

Had coil fitted Aug 2020 and this didn't help bleeding which was daily and then a sever bleed it came out in Oct 2020.

Had northisterone again twice a day and 82 blissful pain free days.

Had coil refitted in jan and tapered off northisterone and when down to 1 a day spotted daily, bleeding then got heavier and heavier until we were back to severe and sudden (no warning) bleeding and it came out again.

These periods leave me feeling extremely tired and heart racing.

I have days of no sleep due to pain despite mefanamic acid and 60mg co codamol.

After the last coil came out the Gp made an urgent referral to gynae as a scan in October also showed bulky uterus with patches indicating adenomyosis.

I was told even urgent referrals take 3 months currently.

3 times my nhs app has shown they've out the review of my case back by a week, another week and then 2.

So this evening I decided as it's been a month I'd call and catch up on the situation.

They told me that the consultant has decided my referral is routine and it wil be 32 weeks.

8 months I spent 18 months jumping through hoops of what nice guidelines ask you to try despite it all failing and the situation continuously getting worse just to get on an 8 month waiting list after it all failed.

I'm currently on northisterone. But I spot every day. I was told by gp if I get breakthrough bleeding I'd have to stop for a week but I just mentally cannot cope with the thought of that and so have had to plan my half term as my break.

I cannot work if I have a period as I flood through tampon, pad and period pants every 20 minutes for hours on end. I cannot teach a lesson this way.

They have told me if I disagree to talk to the GP (she's in next weds so I can ring for telephone apt at 8am).

But that's it. I'm expected to be bleed everyday for another 8 months just to see someone who can then put me on another waiting list for the hysterectomy I need.

I actually do not think I can live like this

@LemonRoses

Go back to your GP and ask for a referral to a different trust. You have a right to choose where you are seen. It doesn’t sound like you meet two week rule referral criteria but there will be local flex on other urgent referrals. Over three cycles of inter menstrual bleeding is often one of the criteria.

My app allows you to change hospital.

Except it doesn't 🤦🏼‍♀️ apparently I have no choice of hospital 🤷‍♀️

Have considered Pals of no luck after speaking to GP.

Thing I think they are bumping me down for is that I take northisterone so "don't have a period".

Except I spot everyday which means it's isn't actually working as if you spot on to you are meant to take a break - I just haven't had the guts yet!

Last one for a week tomorrow morning which should help me stem the bleed in time for getting back in the classroom the following Monday.

Hazey sorry to hear your going through it. I know your the same as me with ds which means your already tired before you even start this! But 2023 is just horrendous.

No I'm not a 2 ww. Just urgent.

However with 1 parent with terminal cancer and one in remission for cancer (both related loosely to hormone related issues) you'd think they at least rule out the possibility. I'm extremely high risk.

Hello 👋🏻
I hope this helps… private doesn’t mean that’s it, you can’t go back to NHS.
you can get a Private consult which does not cost that much. 100-250 normally.
Then tests - yes these are the pricier bits but extensive bloods you might be looking 300-600
Then scans 500 tops.
Follow up with consultant 150
Diagnosis
Referral back to NHS but you’re a step closer and not waiting 8 months

I saw a private consultant who referred me to her NHS list urgently. It changed my life.

Sympathies
I had years of hell, Even after being under gynae for 5 years -endlessly trying all their suggestions, pills/coils etc, none of which worked. I was on iron tablets 3 x a day for over a decade.
I broke down and begged for a hysterectomy. It took another couple of years to finally have the op. I was the happiest woman alive on the day of my surgery. Ridiculous that women have to suffer so much. If men had periods you can bet something would be in place to stop their suffering quicker! Shocking. I hope you can speak to the Dr Wed and she can help

Get the modibody 24 hour period pants and a moon cup?

That's great carpet but you've quoted about £1400 for private.

Some people including me just don't have that sort of funds.

I know it's the usual MN answer but not everyone has a situation they can afford private.
They just can't.

Women have the dirtiest filthiest and most painful end of the stick by 100 miles. While one half of humanity must bear pain and degradation to bring the children of all humanity into being women will never be free or equal.

@Christmasfairy2020

Get the modibody 24 hour period pants and a moon cup?

I have period pants.

I flood through them immediately. They hold 5 tampons worth of blood. I go through 3 tampons an hour including clots they size of jelly pots that just sit in the gusset.

Mooncups don't hold all the blood and because (I think I have a rectocele prolapse) I have a huge lump in my vagina I struggle with them.

@memberofthewedding

Women have the dirtiest filthiest and most painful end of the stick by 100 miles. While one half of humanity must bear pain and degradation to bring the children of all humanity into being women will never be free or equal.

Ain't that the truth

The modibody ones hold 10 tampax if you get ultra 24 hour xx

www.modibodi.co.uk/collections/underpants/products/sensual-hi-waist-bikini-maxi-24hrs

Plus a maternity pad? This isn't ideal and I think you should be seen urgently xx

It's appalling. Are they following the NICE guidelines?

I’ve btdt with extremely heavy bleeding so I really understand. Part of the problem is that urgent cases include our compatriots whose conditions aren’t just completely debilitating, they are life threatening. You do absolutely need to keep being the squeaky wheel because sometimes the person reviewing the chart just doesn’t grasp how severe the problem may be. They might be grouping you with women who have manageable year long periods. Those are awful for certain, but they can still live their lives. They are stuck at home or worse stuck sitting on the toilet. It is also possible that the system is just that backed up given the Covid backlog. I don’t really know. I would definitely keep asking and advocating for yourself. Sometimes that is all you can do.

Oh and for really heavy bleeding I use an ultra tampon and a cloth maternity pad. There are people who make them now where they are surprisingly not that bulky, the key is getting them to really fan out at the ends. And I’m just brainstorming, but have you ever thought about getting a really sharp knife and cutting the thicker tampons so they are shorter? I’d want to try it and then maybe put that one in a glass and an undamaged one in a glass and let them soak in water and see what happens. This is likely horrible advice. I’m honestly just wondering if it would work.

@RandomMess

It's appalling. Are they following the NICE guidelines?

Yes. I did all the things nice guidelines say to try before referral.

The but they are forgetting is that between all the trying and failing you then have just failing for further time whilst you wait to be seen.

Ask about iron infusion not tablets. You can't keep up with your losses with tablets.

So in the NICE guidelines would it categorise you as urgent or not? That was the bit I meant.

I ended up with womb ablation - was heaven!!!

I already use a heavy period pants, maternity pad and super tampon.

I think park of the issue is how fat the blood comes out.

I'll have a 14 days period on a 25 day cycle. But it isn't continuous bleeding. It's 16-36 hours of nothing - nada. Not even spotting.

Then a huge gush of blood out of nowhere. I can't use tampons when not bleeding and it's blooding demoralising wearing maternity pads all day everyday when out of the house "just in case"

Agree with above posted who said they just don't get what it's like sat on a loo for hours.

And if I hear "you're not losing as much blood as you think" one more time I'm gonna collect it up in a Tupperware tub and rip it in their Laos and see how they feel with it unexpectedly running down their legs.

I took a pic of a tampon I'd had in for 10 minutes. I'm happy to use it if I need to to prove a point!

I would be speaking to the secretary telling her the north isn't working anymore, your anaemia is getting worse and can you go on the list for any cancellations, even same day ones.

This is terrible. I'm so sorry you are going through this.

I agree with the suggestion about PALS. You can also make a complaint

www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

Nobody should have to experience what you are.

Completely understand how you feel, i went through 10 years of this and it wasn’t until I was also bleeding from my back passage once a month that they finally took me seriously (tmi sorry). Still was on a 12 month waiting list to see a BSGE clinic so in the end I did pay as you go for a private consultant who specialised in endometriosis but also works in an NHS hospital, paid for 2 consults and a private MRI (came to about £1000 in total). appreciate not everyone can afford that but I went from waiting 12 months to see anyone at all with an 18 month waiting list for surgery to being offered the surgery I needed on the NHS within 3 months of my first private consult. The surgery was literally life changing, took 5 hours with 2 specialists and ended up having a bowel resection due to the endo infiltrating it. Hands down the best £1000 I ever spent in my whole life. Took a lot of research on my part to make sure I got the right consultant and had to travel an hour to see them but as I was spending so much money I wanted to make sure.

Unfortunately, women are still regularly gas lighted when it comes to pain. The long and short of it is that periods should never mean you are unable to go about your normal day - if so something is wrong! It’s just that many doctors don’t seem to realise that (not all of them of course, there are some good ones out there). Doesn’t help they only have about 1 hour of lectures on endometriosis in their 7 years of training…

This is terrible. You should not be left to suffer like this.

I would contact the practice manager at your surgery and ask for an urgent meeting to discuss how they can help you push for appropriate care.

Complain to PALS

I know people have said go private and this is not affordable. However, if you found out the name of the nhs consultant and booking a private appointment with them. They may then transfer you to their nhs list once they have seen you. This could be around £150.

My MIL did this. She needed new knees and could not afford them. The nhs list was 18 mths.

She booked a private appointment with the consultant. He saw her, realised how bad she was and transferred her to his nhs list. She had her operation with 3 months.

Also. Have you looked at ablation. I was offered one due to flooding. I was lucky that a coil worked for me.

Do any of the hospitals have a gynae a and e? To be honest in your situation next time you're in pain or bleeding heavily I would turn up and not leave until you've been seen. This will at least get you an initial review from a specialist and into the system.

@HotDiggidy2017

Completely understand how you feel, i went through 10 years of this and it wasn’t until I was also bleeding from my back passage once a month that they finally took me seriously (tmi sorry). Still was on a 12 month waiting list to see a BSGE clinic so in the end I did pay as you go for a private consultant who specialised in endometriosis but also works in an NHS hospital, paid for 2 consults and a private MRI (came to about £1000 in total). appreciate not everyone can afford that but I went from waiting 12 months to see anyone at all with an 18 month waiting list for surgery to being offered the surgery I needed on the NHS within 3 months of my first private consult. The surgery was literally life changing, took 5 hours with 2 specialists and ended up having a bowel resection due to the endo infiltrating it. Hands down the best £1000 I ever spent in my whole life. Took a lot of research on my part to make sure I got the right consultant and had to travel an hour to see them but as I was spending so much money I wanted to make sure.

Unfortunately, women are still regularly gas lighted when it comes to pain. The long and short of it is that periods should never mean you are unable to go about your normal day - if so something is wrong! It’s just that many doctors don’t seem to realise that (not all of them of course, there are some good ones out there). Doesn’t help they only have about 1 hour of lectures on endometriosis in their 7 years of training…

I'm also bleeding from back passage.

I thought this was because as my uterus swells I get constipated and I also get severe urinary urgency.

I'll mention this to gp

@rasberryandlime

Do any of the hospitals have a gynae a and e? To be honest in your situation next time you're in pain or bleeding heavily I would turn up and not leave until you've been seen. This will at least get you an initial review from a specialist and into the system.

They don't. And last time I was bleeding severely I tried to go to a and e but you have to book a slot currently and "heavy period" isn't a and e reason.

That's the issue. They call it heavy period. When really it's a heamorage. (Imo!).

When I'm left sweating with a racing heart it's not just a monthly bleed.

I look 5 months pregnant after just 1 month of northisterone - no period - but spotting daily.

The next week will be hell. I guess my only other option is to refuse to take northisterone anymore because if the bloating and weight gain and headaches and become so severely anaemic again. But it's so frustrating I have to make myself so ill just to get seen.

I had fibroids and endo. I had urinary urgency due to massive fibroid pressing on bladder. I do think you sound like you have more going on.
You also mentioned a lump in your vagina, I had a huge lump, again the fibroid.

I feel really uncomfortable that you are bleeding so heavily and have a history of aenemia. The blood loss you described sounds exactly like mine. I am still anaemic after blood transfusions and not bleeding anymore.

I think you should go to A&E when you are bleeding and tell them about your anemia history and massive blood loss and ask for a blood test and wait there until they can see you. Before anyone says anemia is not an emergency, it was in my case and may well be in yours, OP.