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

Natural Progesterone cream
You can get it over the internet.

Nit perfect but it might ease things off until you see the consultant.

Or yes, go private:(

I haven’t experienced this myself and I can’t even imagine what it is like.
But I do have a friend who was bleeding daily possibly not as heavy bleeding as you Are having but definitely everyday.
We chatted about contraception as I had stoped mine to try and conceive and she mentioned that she had stopped hers too and tracks her cycles with an app instead. She doesn’t want kids, when we were discussing why she stopped she mentioned that since stopping her bleeding had reduced and after 6 Months she is almost back to just bleeding on her period.

I was just wondering if it is something you have tried?

I’d suggest not using the App but talking to GP and getting referral elsewhere. Tell them you don’t have access to App. Not everyone does and they can do a referral to another place for you.

@itsgettingwierd
Yes, being a parent carer adds to the stress of everything. I also have a history of a gynaecological cancer (in 2003)...and as hard as I try not to panic, I'm afraid I'm doing a pretty poor job. I'm speaking to my GP tomorrow morning in the hope there is the possibility of an iron injection/transfusion, which was on the table with my previous GP, but now seems to be a no no. Through calling daily, I've managed to get an ultrasound referral for the week after half term.
I hope you get some help and some answers

Have considered Pals of no luck after speaking to GP

Your GP cannot fast track the hospital appointment, it’s PALS you need to contact.

All implore all women to complete this Department of Health and Social Care Survey on Women’s Health. (I realise the screen shot is from a menopause support network, however the survey is about women’s health).

consultations.dhsc.gov.uk/talkwomenshealth?fbclid=IwAR3uLE-TzBXD-cGGaSGwEcCPA7v-sDVqq-jwQf9z1Cuo5nBdg_IEiYKJzHs

I'd go to a and e at the height of bleeding and do what you need to do to be seen. Severe bleeding like you describe if left to flow is surely enough to be seen. Heart racing=chest pain too. Again you should get a slot . I would never normally say this but you have to keep being a nuisance or nothing will happen.
I wish I could pay for you myself to go private. Sending you love

That's potentially endometriosis as well as adenomyosis, the endometriosis can be in the bowel area and will bleed.

God it sounds awful what you are putting up with and managing to work.

Could you change GP? Has anyone mentioned zoledex while waiting for surgery?

It's a bit of a brutal drug that puts you into chemical menopause, and it's by no means a cure as it has side effects, but as a last resort if you can't get seen quicker it could give you at least 3-6 months of no bleeding.

It's not advised to go longer than 6 months as it can impact on bone density, but maybe in your situation it could be a stopgap?

I agree that bleeding from the back passage needs looking at as a complicating factor. Your ferritin being so low is something that needs attention. That's a vicious circle, the lower your ferritin them more you'll lose each period.
I was going through one of the massive Ultra tampons and a pad in 15 minutes, losing palm size clots that just slipped around a tampon and had a ferritin of 6. Gynae saw me and I had an ablation within a month of my first appointment. You plainly have more going on than I did.

Speak to your Occupational Health Team. If a teacher I presume it would be o h in the local authority?
They can sometimes help with fast tracking if your medical complaint is affecting your work. Good luck. It’s a terrible thing to deal with I know from experience.

Ask for a choose & book appointment to your local private hospital, you get private care on the NHS. They won't refuse to treat you as they get paid for doing it. If I had gone to an NHS hospital I would have waited months, I got seen in a couple ofweeks & had my first op less than a month later later, have they suggested you try the combined pill back to back? I had norethisterone & it made me depressed, gave me hot flushes & caused my hair to fall out, I would also demand the coil is removed ASAP as well as it is making you worse. If you have completed your family you may be better off with a hysterectomy, they will try to sell you the ablation but the lining can grow back.

Also get yourself some iron supplement, low iron makes periods heavier & starts a vicious circle, heme iron is best, that is iron from meat & blood, I'm on Simply heme iron repair, it doesn't upset your stomach like ferrous sulphate & fumarate does.

@Nat6999

Ask for a choose & book appointment to your local private hospital, you get private care on the NHS. They won't refuse to treat you as they get paid for doing it. If I had gone to an NHS hospital I would have waited months, I got seen in a couple ofweeks & had my first op less than a month later later, have they suggested you try the combined pill back to back? I had norethisterone & it made me depressed, gave me hot flushes & caused my hair to fall out, I would also demand the coil is removed ASAP as well as it is making you worse. If you have completed your family you may be better off with a hysterectomy, they will try to sell you the ablation but the lining can grow back.

Yes my hairs falling out and it makes me feel depressed too.

Do you have anywhere offering private gynae scans near you? There is a place near me that I go to for annual screening and it only costs £60. If they can identify something like fibroids/prolapse on the scan this could be the impetus to bump you up the waiting list?

Oh OP - every sympathy to you

I am a clotter and a flooder too but not as bad as you by the sounds of it. I hate that I have to load up with pads and tampons on certain days just in case my period starts early. I hate that feeling as you feel a flood and you know it's too late to do anything about it. I hate blood on the bedsheets every month because I can't get out of bed quick enough to get to the loo. I hate the blood all over the bathroom floor and the bedroom carpet. I hate the fact that I have to go for pee every 20 minutes or so and the fact I don't actually make any plans when I'm due on because I'm scared I'll piss myself or bleed everywhere.

It's utterly shit and I'm so sorry you aren't getting anywhere with it.

Nothing I can say will help but I just wanted to say I hear you.

Hey @itsgettingwierd....I hope you're ok.
Have ended up in hospital, awaiting a blood transfusion...a little bit of a dramatic way to get things moving.

@HazeyJaneII

Hey *@itsgettingwierd*....I hope you're ok. Have ended up in hospital, awaiting a blood transfusion...a little bit of a dramatic way to get things moving.

Oh no. Sorry to hear that. Hope you're ok and get seen soon.

Agree it's a dramatic way but the sad truth is it seems to be the only one. And that's the issue.

Re private scans - ive had an ultrasound. They've seen the scan and know the issue. They know I need ablation or more realistically a hysterectomy. It's just apparently not urgent and is routine to be seen. So I have to suffer another 8 months after 18 months of getting worse whilst trying the things I have to try.

Have you tried writing to the consultant? Detail all of your symptoms in as graphic detail as possible, list all the time frames, what you have tried, how you are feeling and say you need to be seen sooner than 8 months. Cc in your GP, pals and the chief executive of the hospital. It might just work...

@leavesrfalling

Have you tried writing to the consultant? Detail all of your symptoms in as graphic detail as possible, list all the time frames, what you have tried, how you are feeling and say you need to be seen sooner than 8 months. Cc in your GP, pals and the chief executive of the hospital. It might just work...

I haven't and that's a good idea. I'll see what happens when I speak to GP weds.

I did this when GP referred ds to camhs who referred back and suggested paeds who referred back suggesting camhs.
I emailed camhs outlining why I'd approached Gp and why I felt ds needed to be seen by their service and was given an apt. It took 5 minutes in the room for them to put him on the asd pathway!

If I hadn't fought then he would have needed up in crisis before we got anywhere.

Unfortunately the NHS is severely underfunded.

As long as people keep voting for it it will continue.

People don't usually realise or care until its them who have to wait 12 months for a review and they cant afford to go privately.

@itsgettingwierd

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.

Well, if the NHS won't do it for the best part of a year you may not have a choice but to borrow the money, unfortunately. Can you find a 0% interest credit card and pay it off a bit each month? That's what I'm doing for a private gynie procedure carried out last autumn. I won't have to pay any interest and it's made it more affordable.

I was quoted around

Also private hospital chains often have interest-free credit schemes too.

@Souther

Unfortunately the NHS is severely underfunded.

As long as people keep voting for it it will continue.

People don't usually realise or care until its them who have to wait 12 months for a review and they cant afford to go privately.

Oh they've got money It's not directed at patients though.

OP I am so sorry. It might sound mad but I would write to your MP.

Btw if you are now bleeding from the back, doesn't that get you to A&E?

@oneglassandpuzzled

Also private hospital chains often have interest-free credit schemes too.

That's good to know, thank you.

I've had a very similar issue in that I was so heavy I couldn't walk or go to work although mine only lasted a few days per period. After many months I was put on norethisterone as my doctor was a gynae specialist and have been on it for 14 years with no period and no side effects.

4 years ago my doctor retired and the new doctor tried to take me off the medication. I'm not proud of the methods I used but I included a lot of buzz words around mental health and how it was affecting me and it would cause me to lose my job and would affect my marriage (I would have likely cost me my job so that was true). They referred me to the hospital and I insisted it was done urgently as my medication was running out.

Hospital found nothing wrong and sent a very strongly worded, scolding letter to my doctor instructing them to continue my medication and that considering the circumstances should never have threatened to take me off. I could have kissed that consultant!

So whilst I don't make light of mental health, on odd occasions you have to use every method available.

I feel your pain and I know I'd have said or done anything to get it sorted.