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

@quince2figs

Agree with PP, you should have had a hysteroscopy and endometrial biopsy, to rule out intra-uterine causes. It’s less likely, but could be abnormal thickening of of the uterine lining.

I’m a gynaecologist, and you meet 14-day wait criteria in many areas - it varies between Trusts, but persistent irregular bleeding and failure to respond to your medical treatments plus 2 x IUS, needed urgent investigation months ago, in my view. Suggest you find out what your local criteria are for gynae 2 week wait and put in front of GP. They are not adhering to NiCE HMB guidance

Thankyou this is really useful.

I've not had anything. I've had a referral to that department which GP made as urgent as was annoyed that that would take 3 months as she said it's too long for urgent.

I've had an abdominal ultrasound that showed a bulky uterus with patches and they out endometriosis on my notes and mentioned adenomyosis.

I did have a hpv negative smear in June last year.

My periods though are really odd. So ill have 3-4 days of severe cramping with a normal level of bleeding as I use tranexanmic acid.
They it'll stop. Quite literally I won't even spit for 12-36 hours. The longer times I can actually believe it's stopped. Many a time I've actually thought the coil etc was working.

I can use the loo for a wee, wipe and no blood. And then 3/4/5/45 minutes later it's just pours from me like someone's turned on the tap. This lasts for 3-4 hours and sometimes I'm sat on loo the whole time because I can't even get out of the bathroom before I've flooded a maternity pad or felt another huge clot drop which I need to get out.

The northisterone has prevented a period but I've had a few days of light bleeding and always spotting daily.

I get a very sharp pain slightly to right if centre of my pelvis that comes suddenly and takes my breathe way. It actually makes my breathing very rapid it hurts so much.

My bowels and bladder are not functioning properly. I think I have a rectocele prolapse.

Sometimes I get a very odd feeling of pins and needles around my genital area and my vaginal wall and it's quite disconcerting.

Occasionally I also get a really bad pain in my cervix.

If taking the northisterone stopped my periods and didn't leave me covered in spots, feeling low and piling on the pounds and swelling like a balloon it could be a viable option for next - however long it takes.

My mum has cancer that is now terminal and my dad is in remission so I'm aware I'm likely high risk for cancerous cells?

How would I look up my trusts referral times etc?

I feel very sorry for you OP, ten years ago l went through similar problems, and was failed badly by the NHS and the consultant then responsible for my care. I had uterine Polyps, Fibroids, and was severely Anaemic. Apart from a mirena coil which fell out soon after being fitted, Iron tablets, and large Tena incontinence super sized pads to contain the flow, he did nothing to help me. He told me to go away and wait for my Menopause when the problem would stop.

Quite by chance, l was visiting my father one day, and accidently made a bit of a mess from a leak onto a chair l was sitting on, and l ended up explaining what was wrong with me. Step Mother was a regular church goer, and promised to have a word with someone at church who maybe able to help.

My Luck changed from then on, l was booked into my local Nuffield Hospital as an out patient, to see the Church friend who was none other than Mr.Mike Cust, senior Gynaecologist. He was able to have my notes and test results sent over from my GP and old NHS consultant, and half an hour later he gave me some real hope to get this sorted out for good by performing an Endrometrial Ablasion Proceedure via his NHS clinic, which due to the previous failed treatment, he marked as urgent and was carried out just 3 weeks later.

I did have to pay the private hospital referral fee, which was around £240, but the results were amazing, and worth every penny, and my Father gave me some money towards paying my Bill.

You can look up wait times for your location or postcode here. The search is on procedure (eg enter hysterectomy) but you can also search by department (eg gynae)

www.nhs.uk/service-search/other-services/Procedures/Search?

How awful. Really sad but the NHS isn't fit for purpose in so many areas.

I'm not sure you'd fall under the 2ww as this is only for suspicion of cancer and therefore rule it out.

However, you are absolutely entitled to pick where to go for a 1st appointment. Try to do your research about shorter waiting lists. There are website who can help but otherwise, call the various hospitals around you and ask to speak to a performance manager.

Most likely your hospital is short on gynae consultants and struggling to recruit. It is very common and it takes only one consultant down to bring the waits up significantly.

Your best bet is to find a hospital with a shorter wait. You could possibly be able to go to a private hospital under the NHS. Contact your CCG to see whether this would apply to your location.

Well last northisterone yesterday morning and already I'm 3lb lighter and my skin has cleared and my mood is lifted.

This is despite the fact I have crippling stomach pains and know what's coming.

@itsgettingwierd, so sorry you are having this trouble. From the further info, even more need for investigation.

I’m also so sorry to hear about your parents. Any possibility of endometrial abnormal cells is very unlikely to be related to your parents cancers, though.

Hope this link is useful

www.nice.org.uk/guidance/ng88/chapter/Recommendations#investigations-for-the-cause-of-hmb

A hysterectomy with the Nuffield is £7k I only know this as I was looking for something else.

You have my sympathy though. I had a hysterectomy in 2017 and it took ages and a complaint to PALS

Still in hospital, have had 2 transfusions, several different drs come in and dictated several different plans (clear communication and bedside manner is something that there clearly isn't any time for any more). I've been examined, biopsied and ultrasound. Latest plan is to give me an injection to chemically induce menopause whilst I wait for a hysterectomy (8-12 weeks apparently)...forgot to ask about managing menopause symptoms (eg bone health, hrt) as the Dr seemed to think I was 5 and I was still trying to get my head around the fact that the other Dr has prescribed a complicated regime of northisterone and tranexamic acid.
I should probably start another thread really, but honestly the way women's health is treated is awful, I had the same when I had cancer at 33 and the same when I gave birth. If I wasn't so fucking tired and drained I'd be furious, instead I just can't stop crying.
I'm just so angry and defeated after spending years advocating for my son when he goes into hospital, getting therapy and an education, keeping him safe and being fierce because I realise how poor support and healthcare can be when you have complex needs and learning disabilities.

...oh and I have to wait for result of biopsy because in the rather abrupt words of the Dr...'yhis could still be cancer of course'

hazeyjanell
Much sympathy to you.
I have been where you are, transfused and biopsied and confusing treatment plans. I am sending much support as I know what a infuriating and vulnerable thing it is.

I am sorry if I missed your earlier posts but do you know cause yet? Have you been scanned etc?

Sorry I see you have been scanned, what was found?

Very surprised they are saying 8-12 weeks for hysterectomy, that seems very quick after my recent experiences with NHS. Is a hysterectomy what you want?

Also please take your time about the injections to put you into menopause, is it zoladex? Have you been on this drug before? It can be a difficult drug to tolerate.

Thankyou @Blackopal
Sorry that was all a bit of a tearful earfull.
I've been bleeding for 7 weeks after a year or two of heavy periods for which I took tranexamic acid, which wasn't really working, so GP put me on progesterone and referred me to gynae. First appointment came through for March 2023....so I chased and called and managed to get seen a couple of weeks ago. Gynaecologist referred me for an ultrasound, said probably fibroids, long term may be best to have a hysterectomy (I'm 51).
Then last Thursday night the bleeding was overwhelming, I was dizzy and breathless when I stood up and 111 sent an ambulance. Had a horrendous day in a+e, where blood pressure went through the floor, and bloods showed I needed a transfusion, which I had yesterday.
I've had an examination and biopsy, and just had an ultrasound, which should fibroids. The results of the biopsy sadly won't be back for 2 weeks. Just waiting for the GNrH injection to be given, which should hopefully stop bleeding until I get the hysterectomy.

I will ask which it is..
I have a feeling I shouldn't have posted, because I am sat waiting for the injection...and Im not sure that this isn't going to tip me over the edge.

Again I have been in your scenario and am out the other side of a hysterectomy. No bleeding and life my own again after being unable to live properly due to flooding and bleeding and dealing with severe anemia.
Sounds like you will also be here soon, hold onto that and know this too will pass.

I wasn't meaning to scare you about the injection. When I was put on it I was also given HRT so check you are getting what you need.

If you have bleeding from your back passage you need to see your GP about that. Don't ignore

Hazey so sorry to hear. I was just coming back to check this and see how you are. Sending huge hugs and I don't care how in MN that is or non covid secure 🤣

I stopped northisterone Friday after Friday at one. So far bleeding has been normal (as it is at first) but oh my word - the pain. Even mef acid, 30/500 co codamol and 500mg or paracetamol only makes it bareable. This morning I started the large clots so added my trans acid I can take for 4 days into the mix.

This will keep my flow manageable and level of bleeding is a tampon every 2 hours.

It's after the pain stops and the trans acid stops I get the severe bleeding. So I'm currently mentally preparing myself for the floodgates after getting through this painful stage.

Hope you can get the surgery sooner rather than later.

UPDATE back on northisterone and also to take buscopan. Carry on whether I breakthrough bleed or not.

GP writing to consultant to ask why they've decided a referral that's urgent and is urgent isn't urgent despite never having spoken to me.

Are you taking both 30/500 co-codamol and 500mg paracetamol? The co-codamol already contains paracetamol so you can't have them both together.

@DuckWithOneWing

Are you taking both 30/500 co-codamol and 500mg paracetamol? The co-codamol already contains paracetamol so you can't have them both together.

I am taking 1 30/500 and 1 500 paracetamol.

The same as recommended by GP.

I feel your pain. I was going back and forth to my GP for over a year with very heavy and prolonged bleeding. Had blood tests done and was diognosed with anaemia. GP was adamant that my issue was hormonal and there's nothing they could do to help. I tried every single possible treatment but nothing worked and my bleeding would not stop. I eventually gave up on NHS and went private that's when I was diognosed with fibroids. I went back to my GP with my diagnosis only to be told a referral to a gynecologist could take up 2 years. I was left in tears because for over a year I was misdiagnosed and I'd now had to wait for a further 2 year to have the issue sorted. I decided to take a loan and I had surgery done on private last month and I finally feel normal again.
GPs can be very dismissive and I'm thinking of filing a complaint.
Hope you get some answers soon x