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Original poster

Consultant has refused urgent referral as urgent

124 replies

itsgettingwierd · 27/05/2021 19:59

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 Angry 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 Sad

OP posts:
Pinkpowderpuff · 27/05/2021 20:16

Go private?

wednesadaayaddams · 27/05/2021 20:19

It isn't acceptable at all. I would complain via every possible channel and make enough noise that someone has to pay attention.

'Go private' isn't an option for everyone Hmm but obviously if it is for you OP you would be treated in a far more appropriate and timely manner 💐

Blackopal · 27/05/2021 20:24

I am really sorry, I know exactly how this feels. What you are experiencing is so detrimental to health and quality of life.

I had to use three types of sanitary wear and would often bleed straight through them. Flooding and feeling terrible is no way to exist.

Can I ask if you have had a blood test?
I had one and was found to be severely anaemic and was admitted to hospital straight away for blood transfusions. I had a bulky uterus which was found to be fibroids.
Unfortunately, I do not think the NHS is any use at all with these issues and would urge you to go private for your initial consultation and to get someone to listen to you.
I have just had a hysterectomy after years of trying to get help and being told I just had to put up with it really.

Again, I am sorry, am sending you alot of sympathy.

Original poster
itsgettingwierd · 27/05/2021 20:28

@Pinkpowderpuff

Go private?
Well if I could afford that I would have done!
OP posts:
Original poster
itsgettingwierd · 27/05/2021 20:31

I've been on iron continuously for ages.

Ferritin was 6! Iron 3 times daily and it went to 10!

But this was whilst on northisterone and a coil.

My iron heamoglobon went normal but they were measuring this whilst I had 82 days of northisterone.

It had dropped despite me being on iron at last test but not to below normal.

OP posts:
spaceghett0 · 27/05/2021 20:33

Ah I sympathise op. I've been turned down for treatment altogether for something else even though my gp appealed. Is private an option? I've started a crowd funder for my disorder as I can't afford the private treatment. Haven't got any backers though so maybe won't recommend that lol. Good luck.

Twizbe · 27/05/2021 20:35

You have my sympathies. I'm also going through tests and scans for heavy periods. I've been lucky in that my wait times are low.

Tbh, I'd go to a&e tomorrow morning and refuse to move until you are seen. Or I'd find out where gynocology is in the hospital and literally go there and demand to be seen. 8 months of heavy bleeding like this is NOT on.

ThatOtherPoster · 27/05/2021 20:37

I’m so sorry. One thing - have you used Lillets Ultra in the orange box? They’re for EXTREMELY heavy glow snd are much much more absorbent than even Super Plus. They’re hard to find in shops but Amazon sell them. They saved my life when I had fibroids and flooding.

Soontobe60 · 27/05/2021 20:38

Could you look at getting a private consultation initially, then having treatment via the NHS? An initial consultation is around £250 I believe.

Original poster
itsgettingwierd · 27/05/2021 20:39

@Twizbe

You have my sympathies. I'm also going through tests and scans for heavy periods. I've been lucky in that my wait times are low.

Tbh, I'd go to a&e tomorrow morning and refuse to move until you are seen. Or I'd find out where gynocology is in the hospital and literally go there and demand to be seen. 8 months of heavy bleeding like this is NOT on.

My issue is it's ANOTHER 8 months of top of putting up with for 18 months whilst I tried all the things you must try before even being allowed a referral. And they'd been heavy for years before that and getting heavier. I appreciate the GP can't act before I present with the issue but they made me try 2 coils because the first was expelled.

I honestly cannot afford private. I am a LP to a disabled teen.

OP posts:
Original poster
itsgettingwierd · 27/05/2021 20:40

@ThatOtherPoster

I’m so sorry. One thing - have you used Lillets Ultra in the orange box? They’re for EXTREMELY heavy glow snd are much much more absorbent than even Super Plus. They’re hard to find in shops but Amazon sell them. They saved my life when I had fibroids and flooding.
I've heard of them but I cannot tolerate the super plus tampons. They do not fit Confused are they shorter than them? I'm willing to try anything!
OP posts:
Twizbe · 27/05/2021 20:42

@itsgettingwierd I totally understand. That's why I'm saying go tomorrow and make a noise and demand to be seen there and then.

You could even make a bit of a visual protest and take all the sanitary products you have to use each day to make your point.

On a total side note, I found last month that always are now doing a super super super plus towel.

fecking · 27/05/2021 20:42

Does anyone know how much it would be to pay for this privately?

HazeyJaneII · 27/05/2021 20:43

Oh, @itsgettingwierd
No advice but huge sympathy, as I'm going through similar....endless heavy bleeding, constant phonecalls to try and get 'urgent referral' bumped (first appointment was for March 2023!)
I feel constantly exhausted, unwell and so fucking down I just want to cry all the time.
Keeping everything crossed for you (and me)

LemonRoses · 27/05/2021 20:45

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.

DrinkFeckArseGirls · 27/05/2021 20:45

Complain to pals.

DrinkFeckArseGirls · 27/05/2021 20:46

As in PALS.

LemonRoses · 27/05/2021 20:46

If you are London, there are pan London criteria. You might want to opt for somewhere just wide of central London.

Justwingingit2005 · 27/05/2021 20:46

I have enquired previously about seeing a gynae privately. Last year it was £110 for a consultation.
Might be worth paying that to see what they say then go back under the NHS for treatment. The consultant might be able to give you some meds to be going on with before any treatment.

Serenschintte · 27/05/2021 20:48

Low iron is not a trivial thing. Please please go to the doctor and have it checked.
An iron infusion (tablets are too slow and your blood loss so much that any gains you make are probably wiped out when your period arrives) should reduce the amount of blood you use as you won’t be anemic anymore.
Good Luck

Bythehairywartsonmywitchychin · 27/05/2021 20:49

Contact the hospitals PALS (Patient Advice and Liaison Service) if you get no joy from them contact your local CQC.

Minstermouse · 27/05/2021 20:50

Pinkpowderpuff

Go private?“

That’s so helpful!
(Do you not think OP would have done so already if she had been able to?)

So sorry, Itsgettingwierd. My annual mammogram was cancelled in 2020 “because Covid” - well, strictly speaking it wasn’t because I just didn’t get an appointment at all!
Not sure what to say except huge sympathy/empathy. It’s dire atm.

Rainbowqueeen · 27/05/2021 20:51

Ask to go on a cancellation list
Tell your gp and ask for a referral to someone else.
Have some Flowers. It sounds miserable

Violinist64 · 27/05/2021 20:55

When I had the same problem as you l was accidentally referred privately to see a gynaecologist. It was not too expensive for an initial consultation and I was very glad l did because it meant l was much quicker in getting the treatment l needed. He listened when I said I did not want any more hormonal treatment as, like you, my body expelled the Mirena coil. I had a womb ablation. This is the usual first surgical course of action these days and I was told that it would either stop everything, make everything much lighter or make no difference at all, in which case I would need a hysterectomy. I was lucky as I was in the first category and have not had a period for seven years. I really sympathise with you, OP, and think that you have been treated disgracefully. If the mainly male gynaecologists had to suffer constant haemorrhaging (because, let’s face it, that is what it is) treatment would be much quicker in coming forward.

memberofthewedding · 27/05/2021 21:06

Many years ago (back in 1970s) I had a similar situation but not so bad.

A woman in my workplace who had private insurance recommended her gyni and told me I could see him privately, pay my fee, then ask to be referred to NHS which I did. I did not ask my GP for a letter just went straight to him. He told me it would be 6-8 weeks NHS but I was in within 4. I had my treatment at an NHS ward along side other patients but the op was done by Mr B. Another young girl was in same position. We kept quiet and none of the other patients knew we had skipped part of the waiting list. The only other expense was a follow up apt to make sure all was right.

Sometimes you just have to put your money where your mouth is.