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

@ithoughtisawapuddycat

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.

Good advice.

Can I ask how much northisterone you take a day? I'm currently on 2 and I have to really try and take it 12 hours apart. Because 10-12 hours after a dose I start spotting and often find that if I take one at 6pm by 5pm I'm spotting and this will continue over night whilst I take a few more doses.

A question I can ask my GP is about increasing it. I'm not happy to because it makes me feel awful and my stomach swells like a balloon but the current dose isn't making life any more comfortable.

I had a similar issue & my GP said she’d refer me as on the 2 week path - have you had a trans vaginal scan. I saw a GYN in hospital & had an ablation within 3 weeks. If there are patches which might be adenomyosis your GP could have the same concern that mine did. I refused any hormonal treatment as I used to get v bad PMT and said I couldn’t take the risk of it making me suicidal. Please write down every time you change protection & what level of protection it is, then you have documented proof. The GYN was horrified by my rate of blood loss & ferritin levels.

I was referred as urgent. I don't think that's 2ww but she was horrified it showed as 3 months and wasn't happy about that - so hopefully she'll be on board that 8 months is even more stupid!

Yeah the hormones aren't good for me. I get awful skin which isn't helping my MH and also I feel low on it.

Plus it doesn't stop me spotting daily so I'm not sure it's working as it should anyway!

God that sounds bloody awful OP, it was be terrible for you.
In my trust urgent is a black necrotic leg about to fall off. Or something leading to death if it's not treated now.
What was urgent in the old days before covid is no longer urgent now.
I've never seen so many urgent urgent cases in my life.

I understand OP. I have had the same problems for 5 years. Fought for years for surgery, then covid hit postponing it. Finally had the surgery a few days ago.

Don't give up, keep ringing and complaining. I collapsed once and ended up in a&e which seemed to finally give them a kick to hurry up. So frustrating that they don't take it seriously enough! I had to show pictures of the blood loss and clots I lost to get them to actually believe I was losing more than is normal!

Have you had a hysteroscopy and biopsy done yet? And a transvaginal scan? I had to have 2 rounds of these tests before they finally agreed to surgery 🤔 it's a joke!

I would second a previous poster's suggestion of getting a private consultation with a gynae consultant who also does NHS work locally (most good consultants work primarily NHS with private work on the side). This would normally cost about £150. The gynae can then examine you and put you on their NHS lists for any treatment they decide you need. You would still have whatever wait there is for that treatment but you could cut out the 8 month wait for the initial consultation. Your GP can recommend a suitable consultant and can write you a private referral letter. Some charge a small fee for the letter. You then just ring the consultant's secretary and make an appointment. Even if GP won't refer you, you can book a consultation and explain the issue yourself. The consultant can then access your medical records to check anything.

My DM did this when her GP refused to take her osteoarthritis seriously. She paid for a private consultation and he put her straight onto his NHS urgent list for a knee replacement op.

Unfortunately you have got caught up in the post covid waiting list nightmare. I'm waiting for polyp removal, in the past (had loads) it's been done within 2 weeks on the cancer pathway, this time I'm at 8months and still no date, I asked my gp to do them but she won't alas. My personal advice is to keep calling, they might fit you in to stop the calls, we can be too polite.

I had an abdominal ultrasound.

They were meant to do trans signal but obviously as I was bleeding daily at the time and quite a bit they decided to go abdominal.

I was only half joking about collecting blood loss in a Tupperware container! I wouldn't actually present it to the GP but could take a photo and amount.

I did take a photo which I deleted because I got the referral of a tampon I'd had in for 10 minutes. The clot attaches to it was twice the size of the tampon.

That was 10 minutes of 2 weeks blood loss.

@motogogo

Unfortunately you have got caught up in the post covid waiting list nightmare. I'm waiting for polyp removal, in the past (had loads) it's been done within 2 weeks on the cancer pathway, this time I'm at 8months and still no date, I asked my gp to do them but she won't alas. My personal advice is to keep calling, they might fit you in to stop the calls, we can be too polite.

I wasn't that polite to the poor woman in booking

I did ask why a consultant decided something was routine having never met me that a Go who knows my history has decided is now urgent.

She just said to go back to GP if I didn't agree and they can write to consultant again.

I'm trying that on weds as first point of call and then will try the other things I've had great advice here on.

I could muster up £150 for a private consult but that would be stretching it and couldn't afford more. I think it's great you can have interest free but if it's £100 a month for a year that's too much of a financial strain.

Oh Op, sending you hugs.
Another one here who has to wear nappies basically because of the flooding and clots and the bleeding lasts 8 weeks sometimes. It's debilitating. Also anaemic and waiting for an 'urgent' referral to check on my fibroids and check on the cause of the anaemia (! think it's fairly obvious). I think it'll be months before I get seen.
Life is hard and shit sometimes and it sounds absolutely horrendous what you are going through. I can't believe how women get sidelined like this and are expected to carry on living with these life altering conditions while someone shifts a bit of paper from one pile to the next.
No advice really, just sending you a bit of love & support. Hope you can get someone to see you soon, it's so wrong!

Women's services are so badly funded it's shocking. I was diagnosed with stage 4 endo in 2019 after 25 years of begging for support for heavy periods fainting etc

I had surgery in Feb 2019 and I woke up to be told it was so bad that they needed a gastrointestinal surgeon too. I was told I was on an urgent WL
Roll on February 2020 and there was still no surgery so we went private.
They removed it all and the surgeon said it was one of the worst he had seen in years.
He told me to remain on the NHS WL just in case. In Dec 2020 they contacted me to tell me I was still on the list.
In January 2021 I could feel that the endo had grown back on my left sciatic nerve I'm
Swollen and struggling to walk. I asked if my place on the list was any closer and I was told it would be 2022 at the earliest.
Technically I have now been on the waiting list for 26 months! (Ignoring the fact that I paid to go private in between)
It's Insane.

I completely sympathise and it's very frustrating when they don't take us seriously. I was bleeding so much that I had something called an anaemic tongue, my body stopped renewing itself, my taste buds went. I lost 3 stone and come out with psoriasis all over my body. I couldn't walk because the skin on my feet was splitting open from it all. I had to beg for an iron transfusion, as I couldn't take normal iron tablets and even if I could it would have taken months and months to get my ioem levels back to anything. Only when I started fainting from it all I manged to get an er iron transfusion. It took me 3 years to get treated for this, I had ablation done in the end. But that's only OK if you're done having kids. It's now been 4 years I suffer from kidney stones because my kidneys got battered when I was anemic and I have ulcerative colitis from it. I'm 39 and feel like I have an 80 year old body

Sorry that sounds awful. I had the same and also three blood transfusions as iron got so low. On list for hysterectomy that kept getting cancelled pre covid - awful times and had to pay in the end and go private...

In the end it was a fibroid the size of a grapefruit removed with hysterectomy...

Can you tell GP that you cannot fulfil your duties of care for your DC or DPs with this illness.
Lay it on hard.
I'd be furious and probably go repeatedly to A/E - you would probably be referred to a consultant from there who might not be the one you are seeing. Or go to a different hospital A/E see if you get a different consultant.

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

Op have you had your covid jab yet? Apparently lots of wombs have experienced much heavier periods after having their jab - lots on here in the covid section if you haven’t seen it.
Just wondering if you could utilise this info in any way as another reason to speed you getting seen up - maybe that you’re scared to have the jab because you won’t cope with the bleeding/resulting extra anaemia if you haven’t had it or that it’s getting much worse again if you have had it (and seems to be that the effects can be pretty long term - 6 months at least for those that have had the jab that far ago) rather than just being bad for 1 or 2 months.

Might be another thing to use to help convince them when anything might help!

It's grim. My DD suffers from very long heavy periods. The only way we were able to get the GP to take it seriously was for her to photograph every pad she flooded through - we kept a pound coin in the bathroom for her to use to show the scale of the clots and had the date/time stamp on the photos. She then sat there scrolling through her phone until the GP realised she wasn't going to go away. Could you do something similar when you are on your period next week and get your GP to send them to the consultant (or send them yourself?)

Can you contact pals and ask for a second opinion on respect of the urgency? Take photos and send them too.

I use to take 3 a day but for the last 5 years I've been on 2 per day, one when I get up about 7.30am and the second before bed at about 9.30pm. However if I leave a longer time period between them it doesn't have any affect. I've not had even the slightest bit of spotting since I started on them.

They also tried to force me to have the coil saying it would probably stop my periods but could take 6 months to work. So I asked how I was supposed to leave the house for those 6 months and what if it didn't work. I refused as I didn't want a coil under any circumstances.

It's pisses me off so much how much they try and force the coil on women, acting like it's a damn miracle cure to all our problems. I tried it once and like all other birth control it made me bleed even more and made me fell like I was going insane. Trying to get it removed, oh they don't like us asking to remove it. Our body our choice!

@wibdib

Op have you had your covid jab yet? Apparently lots of wombs have experienced much heavier periods after having their jab - lots on here in the covid section if you haven’t seen it. Just wondering if you could utilise this info in any way as another reason to speed you getting seen up - maybe that you’re scared to have the jab because you won’t cope with the bleeding/resulting extra anaemia if you haven’t had it or that it’s getting much worse again if you have had it (and seems to be that the effects can be pretty long term - 6 months at least for those that have had the jab that far ago) rather than just being bad for 1 or 2 months.

Might be another thing to use to help convince them when anything might help!

Fully vaccinated. Couldn't tell you if it had any effect or not as was going through the withdrawal of northisterone after coil fitted.

@ithoughtisawapuddycat

I use to take 3 a day but for the last 5 years I've been on 2 per day, one when I get up about 7.30am and the second before bed at about 9.30pm. However if I leave a longer time period between them it doesn't have any affect. I've not had even the slightest bit of spotting since I started on them.

Thankyou. It maybe I need to try 3 a day

@pintoffginplz

It's pisses me off so much how much they try and force the coil on women, acting like it's a damn miracle cure to all our problems. I tried it once and like all other birth control it made me bleed even more and made me fell like I was going insane. Trying to get it removed, oh they don't like us asking to remove it. Our body our choice!

This!

I'm refusing the coil for my heavy bleeding but it feels that they no longer listen to me because of this. I told them it's like they are sponsored by Mirena.