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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Hysterectomy rights?

14 replies

HysterectomyNhs · 31/03/2023 08:17

Apologies if this is a long thread but I am desperate for some advice / info/ aibu to escalate my situation…

Last April I had a laparoscopy it confirmed I had endometriosis, my surgery notes needed further discussion about how advanced the endometriosis was and possible adenomosis.
I was put on 3 month prostap injections to help with the debilitating periods I was routinely experiencing and give my ovaries a break. I also had an MRI in August. Despite multiple requests and phone calls from my consultant, This was still not reported and he made a decision in September without the full information for the MRI for an ablation.
This was because I was only experiencing small amounts of pain from my endometriosis and I thought it’s best to Try ablation as having no periods whilst on the prostap ( that had left me so anaemic that I’d had three iron transfusions) had given me a better quality of life.
I was booked in for an ablation last October , a few days before they cancelled This procedure and put me back on the waiting list.
I was then left on the prostap injections for longer. Every time I asked about my MRI, or phoned the department, I was told they had a backlog.
In December, I suddenly started to experience abdominal pain across my stomach and pelvic area. This pain got gradually worse and then so severe I was admitted to hospital.

The Drs needed to an MRI, but they realised that they couldn’t do one without the results from the first one being reported. This took over a week to report! My endometriosis was pretty advanced, I also had adenomosis - and this was the cause of my pain.
My consultant confirmed that had the MRI been available from last August, he would have only requested for me to have a full hysterectomy as that was the only course of Action for me to resolve my issues! The
I was so reassured because of the severe pain I was in, and the fact that the MRI had been missed and I’d become so unwell that I ended up in hospital, that I would be flagged up as an urgent case for a hysterectomy.
I was sent home in December with, cocadrymol, diflofenec, initially oxycodone which was changed to oramorp as I wasn’t coping with the pain at night.
This pain is constant , all across my stomach and pelvic area, leaving me with a burning sensation, extreme fatigue if i stand for too long or move around.
the painkillers seem to take the edge of the pain. I had the full support of my management team and was signed off work from December pending the hysterectomy. This was because - despite the endometriosis, I had not had time off, in the 9 years I’ve worked there and the team were aware how I managed despite being on low level pain, periods etc.

I was left signed off in constant pain that doesnt subside. I was finally given a date for my hysterectomy on the 29th March, I felt like I could finally see a light at the end of this awful pain and start of my recovery.
days before the surgery, I received another letter cancelling my procedure!
After many liaisons with the admissions , I have not been given another definitive date - may be possibly end of May is what they’ve said.
My case was opened officially and signed off for a hysterectomy on January 24th, however had my MRI been reported from the 2nd August, I would have been on the waiting list immediately. I am being penalised for this error and also being left on painkiller like morphine for almost 6 months.
what are my rights ?
has anyone been in this kind of continuous pain before?
Any advice on what I can do next?
I cannot afford to go private and I am nervous as I want the right team to do the surgery that know my case.
i am not unhappy with my consultant , but am angry with how MRI Wasn’t reported and has now left me in this position . I will
also start losing pay from next month.
thank you for reading if you have got this far.

OP posts:
dryingontheradiatior · 31/03/2023 08:23

I must admit I have skim read, as I have struggled with the lack of paragraphing.

I have endometriosis and used to be in daily pain that ruined my life.

First up, endo isn't visible on MRIs. It is only visible by looking at it during surgery.
Ablation is shown to not be a good option, excision surgery is now recommended, and there are specialists that offer this.

The mirena coil made a huge difference to my experience with my endo and completely changed my quality of life. My pain was drastically reduced. I didn't wake up "pain free" until I had the coil. I still had bad days, but much less.

I am now not on contraception because we wanted a baby (we've had fertility support as I also have pcos, and I'm now 8 weeks pregnant) and there hasn't been a drastic decline - still some bad days, but nothing like before.

I'm sorry you're going through this. Do you 100% want a hysterectomy? Because there are other options and specialists that you could speak to. Hysterectomies aren't a guaranteed 'cure' either, as endometriosis can exist away from the uterus. Mine is on some of my ligaments too, so a hysterectomy wouldn't solve that.
There is a facebook group called Nancy's Nook that I'd suggest joining which has been more informative than any GP or typical gynae consultant.

HysterectomyNhs · 31/03/2023 08:36

aah .. i wrote it so quickly I should have checked the paragraphing.

I was told the pain is most likely from
the adenomosis which has caused the uterus to become ‘bulky’.

I have multiple endometriotic cysts as well as fibroids. The endometriosis could also be affecting my bowels.
I had another MRI done in December.
These two MRIs. plus the laparoscopy done last April was used to discuss my case by the endometriosis specialist team at the hospital. The consultants all felt that the best course of action was a hysterectomy if I want the pain from
the adenomosis to subside.

It is not what I want, but after living with this severe continuous daily pain since December - I have no choice but to have a hysterectomy. I am in limbo, I cannot go to work, function or even sleep throughout the night because of the pain.

OP posts:
Paloma66 · 31/03/2023 08:39

I had an ablation 15 years ago after suffering the most severe case of endometriosis and adenomyosis my consultant had ever seen. It absolutely transformed my life and I have been pain free and free from bleeding ever since.

HysterectomyNhs · 31/03/2023 08:40

My aibu is more to do with,
what, if any advice I could be given in terms of what I can do next to escalate my situation.

had my MRI been reported last August, I would have been on the waiting list for a hysterectomy but now I am lower on the waiting list and I believe some acknowledgment and accountability should be yaken

OP posts:
mdh2020 · 31/03/2023 08:41

I don’t think you have any rights. You will just have to wait in the queue even tho it is unfair because you should be placed higher up the list. This happened to me years ago - my name simply didn’t get put on the list.

HysterectomyNhs · 31/03/2023 08:45

I think if I wasn’t in this kind of pain, I wouldn’t be this upset and frustrated m.

i struggle to get out of bed without pain killers , I can only walk or stand for a little bit, I am in constant pain and at night I wake with it and have to take oramoph.

I am not someone who can’t cope with pain; I’ve managed and gone with work before - this is continuous , leave me fatigued when I do small daily tasks , I am getting ‘snappy’ from this pain, not able to be the mother I want to be.

OP posts:
AreMyDucksinarow · 31/03/2023 08:50

You have my sympathies op!

it took me 7 years to get someone to listen to me, and a further 18 months to get a diagnosis - then a further 8 months to get treatment.

In between all this I had to suffer through so much pain, anxiety, try and parent 2 children etc it was bloody heartbreaking.

Can you speak to Pals and put in a complaint, they may be able to help (I don’t know how they work) the other alternative is paying privately which is ££££

follyfoot37 · 31/03/2023 08:50

HysterectomyNhs · 31/03/2023 08:40

My aibu is more to do with,
what, if any advice I could be given in terms of what I can do next to escalate my situation.

had my MRI been reported last August, I would have been on the waiting list for a hysterectomy but now I am lower on the waiting list and I believe some acknowledgment and accountability should be yaken

Get in touch with PALS; they are usually very good at looking at such issues and advising you. Have you seen a specialist nurse at all? Again, they can put a bomb under the waiting list managersand get stuff done.
This has been dreadful for you - I would cconsider a complaint against the imaging depatment once this is over

HysterectomyNhs · 31/03/2023 08:56

The journey it took to be believed.
I have suffered since I was in my teens , even been hospitalised as a teenager for what I know believe to be a burst cyst. But at the time I was told- with no scans or investigations after managing my pain that it may be ‘psychosomatic’.

This pain is like no other because it is not cyclic and it’s across my whole
stomach and the burning sensation is new.

It makes me question why it is continuous, why it hasn’t subsided December.
has anyone else experienced this?

OP posts:
HysterectomyNhs · 31/03/2023 09:03

I hve already got in touch with PALs this week.
thank you for everyone that has responded.
I have three young kids , luckily not babies one who is SEND.
my house is upside down, my Husband gets the kids ready, the childminder picks them up,
i just about make the dinner.

OP posts:
Catsonskis · 31/03/2023 09:16

I can’t comment on your condition or experience in that regard but I can hopefully explain how waiting lists and referrals work so you have some more information.

so, when you are referred from your GP to the hospital for any (non-cancer suspected) condition, you start what is known as the 18 week referral to treatment clock (from the date of referral, not the date referral received). The nhs standard is you should be seen and treated (treated could be surgery, medication or decision not to treat) by 18 weeks. 92% of all patients should be treated within 18 weeks or the trust gets hefty fines. If the patient is not treated within 52 weeks the trust gets an even heftier fine and investigations launched into each episode. The “working” theory is you’re meant to have an outpatient appt by 6 weeks, any diagnostics ran by week 12 and a decision by week 18.

as you can imagine, this has absolutely gone to pot since covid. But the standard remains and the teams are working hard to achieve the 92%. Unfortunately even prior to covid gynaecology generally had a poor achievement wait and many patients waiting 30+ weeks, now most departments are on 52 weeks at least for Gynae.

you are added to a waiting list when a clinical decision maker makes a “decision to treat”, that could be any time in the pathway, and you are added in chronological order, unless the doctor highlights category for urgency which would bump you up the queue some.

in your experience it sounds like there was a delay in decision to treat due to the delay from the reporting from the MRI in August. This is something you can complain or at least ask questions about. Diagnostics should all (and regularly are) reported by 2 weeks (so your first instance of taking a week to be reported is fine).

it also sounds like ypur clock will have stopped as treated when you were given the medication. So you are now on a non-open pathway (but still should be being treated in a timely manner, there just isn’t the fines associated)

the cancelling of multiple dates is very upsetting and stressful, and not at all unusual, I am sorry about that. Did they give you reasons? You won’t have gone to bottom of the list though. Unfortunately more urgent cases/in patient cases may have taken priority though which is why you haven’t moved up yet. Incredibly frustrating for you.

SO - TLDR

if I were you I would contact pals and ask for the directorate manager of gynaecology to do a review of your pathway and provide a timeline and an explanation to all the delays, an investigation into the delay to radiological reporting and for a clinician to assess if you have come to any clinical harm due to this delay, ask for a date for your surgery (they should know the next 4 weeks or possibly 6 weeks of lists). If this isn’t offered/resolved, explain you would then like to raise as a formal complaint.

hope that helps somewhat! And hope you are treated soon!

FixTheBone · 31/03/2023 09:25

What @Catsonskis says is all very reasonable.

I would be tempted to email the service manager for Gynae and cc PALS, or ask PALS to forward to the service manager.

I would be direct and short and state that your scan results were delayed, and as a result your entry to the waiting list was delayed also, can you be reinstated in your proper place.

I would also query directly whether you are on a clock-stopped pathway due to having received treatment - and argue that the medication is not definitive treatment, merely temporary symptom management while you are waiting.

Don't be surprised however if literally every patient is in a similar position - we have huge problems with MR scans being reported - can often take months, in which case every patient would be bumped up the queue, so the waiting time would still be the same.

HysterectomyNhs · 31/03/2023 09:29

Thank you Catsonskis
That is informative and helpful.
I have already made a request to PALS.

I wish I had done this thread first as you have articulated the request better.
They havnt given a formal reason why it was cancelled but possibly due to a cancer patient.

OP posts:
subolooo · 31/03/2023 09:31

I'm in exactly the same situation. The constant pain made my mental health dip significantly and I had to be signed off work last year. Ive been waiting since December for a date for my surgery. The pain is unreal and the pain killers are barely touching it now. Its keeping me awake at night and I'm constantly tired. I'm on the monthly injections along with HRT to combat the side effects.

I have no advice at all but just wanted to say you're not alone and I hope you get the care you need and your operation very soon.

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