At what point do you contact PALS? - Endometriosis UK

Endometriosis UK

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At what point do you contact PALS?

AllthatGlitters
AllthatGlitters

I got put on the 12 week waiting list for surgery for a laparoscopy, biopsy and hysteroscopy. This time is now up.

My symptoms have got worse and the doctors are writing to gynae to let them my symptoms are worse and to hopefully get me a date.

I contacted the medical secretary about a month ago in the hope she could give me some more information about dates however she said at the time it had gone over the 12 weeks waiting list due to holidays and surgical lists. I have since phoned her, left a voicemail however she never returns my call.

I don’t want to come across like I am the only person waiting for the operation or that I am being impatient however I can’t get on with my life until I have had this op.

I have started to flood severely and I can’t cope with it now.

Argh .... any advice?

X

12 Replies

Hey I’m so sorry you’re going through this,

I wasn’t bothered about being persistent when I was waiting for my mri results (was a whole big mess up) told one thing another thing happens.

I contacted pals and found them really helpful. They’re not just for proper complaints either, they just found out things I couldn’t find out and managed to push things forward. They can go directly to secretaries and ask the questions.

I called them and was called back the same day. Don’t feel like you’re complaining, you just want answers.

Call them tomorrow and leave a message.

Good luck xx

Thank you, yeah I don’t want to complain at all as I feel the NHS are doing a fantastic job. All I want to say is please give me a date as you put me on the urgent list x

Hidden
Hidden

Does your consultant work alongside a Endometriosis nurse specialist? I had surgery cancelled at Addenbrookes & contacted the Endometriosis nurse specialist who got back to me later on that day with a new date. Maybe I was just extremely lucky with her but she was far more helpful than the secretary every time I needed something. It's awful when the symptoms become unbearable, fingers crossed you get sorted out before too long. X

AllthatGlitters
AllthatGlitters in reply to Hidden

Thank you I am not sure if my consultant has an Endo nurse, I didn’t really spend that long with them at my appointment. It was very clear from the start that I was getting surgery. It was a shock to me tho lol x

Hidden
Hidden in reply to AllthatGlitters

Hopefully PALS will be able to help you. I'm like you & don't like complaining but sometimes hospitals need a little push to get things sorted so don't feel bad about it. X

AllthatGlitters
AllthatGlitters in reply to Hidden

Thanks. Hope you are having a pain free day x

Hi,

I contacted pals a week after my referral as i was told that Id be waiting 6 months!! I also had a response from pals the next day explaining that these were the waiting times unfortunately & after the 12 weeks I could put a complaint in bring it closer.

I wasnt having any of it as my pain was severely taking over my life becoming unbearable. Id ring the consultants secretary weekly, sometimes in tears. Every worsening symptom I made sure she knew about. Eventually I had a date brought forward to 3 months instead of 6, having my Lap on this coming Monday 5th!

Dont give up! Let them know you cant live like that. Its not fair & seems inhumane we have to tolerate this pain & way of life.

Without being sexist, im sure If a males delicate parts were glueing together from the insides they wouldn’t be waiting 6 months in pain!

I hope you are listened to sooner rather than later.

Paula xx

Hi paula yes you are right about the men’s bits haha! They would be complaining more than us too I am sure x

So sorry you’re struggling. What if you went to your doc and asked them to try to push it along?

I’d say the only way to get put up the list is if they class you as an emergency. That was how I had my first lap done so quickly. I had been off work for quite a bit too which seemed to work in my favour.

I’m waiting for my 2nd lap and the waiting list is 9 months. The surgeon seemed surprised that I’d been able to get the first one done so quickly (different surgeon this time) He kept looking like he was wracking his brain trying to think how to get me up the list.

I know how you feel, it’s so frustrating not being in control of your own life or body. The NHS is an amazing thing but my god everything takes SO long!

I hope you get some good news soon

Hello thanks for replying :) I have been to the GP several times and also been on /off work for the best part of a year and a half. Some days I can feel absolutely fantastic then the next not so much when the bleeding starts. I have got use to pain in the stomach now, I have lived with it for so many years. I can’t go the heavy bleeding as it comes through my clothes x

Oh god that sounds awful, I once had a period like that it was horrendous and I was given pills to stop it. Thankfully it never happened again although my periods are heavy, they’re manageable.

Is there nothing the doc or the hospital can give you to stop your periods in the meantime? My surgeon is going to put me on something to stop mine for a bit in the hope that it helps shrink the cysts I have.

It’s awful that you’re just left to get on with it. ☹️

Hi,

I really feel for you because I know exactly how you’re feeling.

So this isn’t the right or wrong way to go about it but my mum took the initiative to be honest. When the flooding wouldn’t stop plus I’m also very anaemic, I had nurses doing double takes because I was as white as a sheet of paper apparently and I had to have 4 blood transfusions.

So 5 months still to go and my mum rang an ambulance.

They had to admit me because of the state I was in. So then I had my lap and hysteroscopy 5 months early.

I’m not saying that everyone should do it but if like me, you are in a bad state that is affecting you daily, go to A&E hon. That’s what they’re there for.

As for something like zoladex or depo to try and stop the bleeding, this is just my personal opinion but they both made everything worse for me and since my diagnosis, I’ve read a lot of papers etc published by endo specialists. They are completely against these drugs being used. They say that the only thing that will truly help is excision surgery done by someone who knows what they’re doing and can remove every bit of endometriosis. Not like the majority of gynaes who just laser it. Which is now being described as a tip of the iceberg effect. They’re burning it on top but not removing it from the root. I’ve had 3 failed laps so now I need to travel out of Wales to find a proper surgeon who is skilled in excision surgery.

Fair play to them, they don’t make it easy for us do they!

Good luck hon, I really hope things get better soon.

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