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Endometriosis UK
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I'm tired of waiting... (rant)

I’m sick of waiting.

I was overjoyed to be referred to a BSGE center (Aberdeen) in August as an urgent referral. I’ve been waiting patiently for months. At the start of December I got a letter saying I’d been placed on the colo-rectal general surgery wait list as well due to my symptoms. Thankfully the letter had a telephone number on it so I called. To find out I still have another 40 weeks plus on the gyne wait list….even though I’m on the short notice list.

This means by the time I ever get my first out-patient appointment I’ll have been waiting over a year.

How in the world is anyone expected to wait over a year for a new outpatient appointment.

I’m tired. I don’t know what I’m meant to do anymore. It took 15 years to get a GP to believe me that something was wrong and refer me to a BSGE center as she’s convinced its stage 4 endo given the GI problems, the bleeding from places I should not be bleeding from the crippling back pain I’m now constantly in. I’ve been on the pill since I was 13. I’ve been waiting 15 years already for treatment.

I’m tired of waiting. I’m tired of living every day in pain. I’m tired of having nightmares about waiting a year for an appointment for nothing to happen. I’m just tired of everything and I don’t want to do anything anymore. I’m trying to build up the energy to go to work but I don’t have it anymore.

I don’t know what to do.

I don't even know the point of this I just need...to get this out somewhere because everyone I know is sick of hearing me complain anyway. I think for the first time in all of this I actually feel completely alone.

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Hey, I’m sorry to hear you’re going through all this, I know it’s tough waiting for a date but I was waiting about a year for my lap and I still have issues post surgery.

I only managed to speed things up as I contacted PALS who were able to get me an earlier date. Just because you’re on the urgent list doesn’t mean you’ll be seen straight away, I found that out off my GP. Patients who are critically ill etc will always take priority.

Definitely contact PALS, tell them your symptoms etc and they may be able to find you a date sooner. Xx

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We don’t have PALS in Scotland and I don't think we have an equivalent service either. Everything I’ve looked into doesn’t seem to suggest we do. I totally understand that other patients who are sicker have to be seen first, but a year for your first outpatient appointment is kinda unreasonable. NHS Scotland have a guideline of all patients should be treated within 12 weeks of referral. I’m just mind boggled at how can you expect someone to be waiting a year for an outpatient appointment? I’m at the point where I’m struggling to hold down my job. My GP has chased the hospital several times now. I’m just beyond exhausted and tired dealing with all of this. I’m in agony every day and I’m expected to sit here for several more months to just get an appointment. It will be at least another year after that before I even get to the top of a surgical list anywhere. I’m just…what was even the point of spending years trying to find a GP who believed me, when there’s no doctors to treat me. I just feel like, here we go again I got my hopes up for nothing.

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Hi I'm really sorry to hear what you are going through. I've not got any advice other than knowing that the corresponding service to PALS in Scotland is called PASS I believe.. If you Google PASS Scotland it should come up as the first like. I work on a support line and direct people there if they have any concerns or questions 're. Their NHS treatment so it should be a good option to try.

All the best for the future and keep making lots of noise... as awful as it sounds, the noisiest patients get speeded up where possible xx

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Where I live in Ireland I was told 18mths for an outpatient appt at one hospital and that wasn't even to see a specialist as there aren't any!

I paid to see one privately in the UK. Would you consider paying to see the consultant privately and then get referred back on the NHS for treatment? It's not right anyone has to do that but it might speed things along a little....:(

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Its utterly unacceptable that we're expected to wait these tiimes. Seeing people wait literally years to see doctors is just making me more outraged. We deserve better than this.

Paying privately is something I would consider but it would take several months to be able to save up, so I'm not sure it would actually be faster tbh.

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I’m sorry you feel this way. I waited about 18 months for mine and it’s good to get things off your chest.

Please know you’re not alone in the waiting game and make the most of the time by looking after yourself (make time to treat yourself, relax, exercise) and keep healthy to prepare for your op. If unfortunately there’s nothing you can do about the wait, make the wait nice!!

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It's the worry that I'm going to go to my first outpatient apointment and be told hteres nothing wrong, and they wont do the op and a year has been wasted for nothing. I'm just...angry at how bad the care we get is. We deserve better than this.

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Do not feel alone! You have many endo sisters going through the same thing with you. I am so sorry for your pain. And yes 1 year of waiting is really long. This forum really helps, and I recently stumbled upon a Facebook group page called Nancy’s Nook Endometriosis Education. It has helped me through a lot. There’s a reason it has 50k followers. Lots of information on there about the disease and information on recurring endo and how to get help from the best endo excision doctors so that a 3rd, 4th, 5th laparoscopy is not needed (which is sadly all too common if a regular gynecologist performs the laparoscopy with the necessary skill set to get all the endo out. Please check out the page and let me know what you think!!

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Sorry I meant (which is sadly all too common if a regular gynecologist performs the laparoscopy without the necessary skill set to get all the endo out)

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Thanks for the advice! I've been refered to the BSGE endo team at Aberdeen, I know I am for sure on the list to see the endo team. It's just fustrating that its over a year to wait for new patients, I wouldn't mind if the ball was rolling and I was waiting on surgery, but I have to go through the outpatient list, then go on another list for sugery. I was talking to someone else who is in the area and they were saying they're still on the surgical backlog from 2017 so the chance of getting a lap before 2020 is very small. I can not believe the wait, in what world is it ever okay for us to be treated like this. We deserve better.

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Right that is crazy that someone is still waiting from 2017! Mean while know that there are other options out there. On the list I saw 4 doctors in the UK that you can try contacting to see what their wait is. I’m not sure how insurance works in the UK as I’m in the US. But it doesn’t hurt to try and contact them to see.

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We don't have insurance, it's state run healthcare. So I'd have to pay for everything entirely out of pocket. Something like only 1% of people in the UK have health insurance. The fustrating thing is the treatment target is meant to be 12 weeks from referal to hospital treatment. Having people wait 3 years for an operation is absoloute insanity. The NHS in Scotland is also entirely seperate from the NHS in the rest of the UK, so cross boarder treatment is doable but very difficult to get a hold of.

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That’s good to know. Since a lot of ladies on here are from the UK I wanted to understand how the system works before recommending options. So it seems you could pick whichever doctors you like since you’re paying out of pocket right? Or is a referral always needed? What’s the difference between bsge and nhs? I’m guessing they’re state funded? So if you wanted to go to a private doctor, costs would be extremely high? And how much is a typical laparoscopy going to cost?

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The BSGE (The British Society for Gynaecological Endoscopy) are hospials or departments who have been accredited to speciality treat Endometriosis. So theres a list of accredited doctors and centres here (there are only two in Scotland, both NHS hospitals bsge.org.uk/centre/ ) that are accredited by BSGE. The NHS guidelines state hese are the centres you should be referred to if you have endo or suspected endo. The surgeons that work in these centres have proved they are able to successfully do more skilled surgery than just your bog-standard GYN. I’m sure if you have a look around here you’ll see the stories of general GYNs monumentally messing up endometriosis treatment. So you'll see a lot of people on here going 'make sure its a BSGE center' to each other.

As far as I am aware there are no private GYN specialising in endometriosis in Scotland, and there are no private GYNs that are accredited by BSGE. Even if there was it would be tens of thousands to have it done privately, and you can not self refer to most private specialists here, you would require a general practitioner (and equivalent of a primary care physician) referal.

The process is the same as a referral to an NHS hospital it’s just you get sent to the private hospital and you have to pay out of pocket. Once the referral to the private hospital is sent, they will decide if they will see you (they can refuse you if you don't have insurance with the private company running the hospital) and private healthcare insurers here will not include any past, current, or historical medical needs on your policy, and it’s unlikely because of the endometriosis I’ll ever get accepted for a private healthcare insurance policy here.

Even if I did get to see a private GYN I would need to be referred back to the NHS for surgery, so we’d be right back to where we are now. It’s a very frustrating system, mostly down to the monumental lack of medical staff the north of Scotland (we have huge problems with understaffing both in the NHS and private), travelling down to England to have it done privately would be tens of thousands of pounds which I just don’t have.

And you know it annoys me we have to even consider this year. Our healthcare isn’t free. We pay national insurance fees, it’s free at point of use which is important but, we pay fees out of every paycheck for it.

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Wow that is so eye opening and sounds like a very slow backed up process. The list I am looking at have Doctor's recommended in London, Wirral, Surrey, Stockport.

Only Dr. Chris Mann at The Endometriosis Clinic is is showing that he is at 4 private hospitals across the midlands but as you mentioned private would refer you right back to the NHS...

I'm at least very glad that BSGE sounds promising and have highly accredited doctors, but they sure do need more cause it sounds like they are not meeting the demand for endometriosis at all. This is so heartbreaking.

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Also this might not be very helpful or you may not be in the position to have this as an option but have you considered cbd oils? I’ve read that it’s helped some women.

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Nancy nook is aa e of knowledge. Che just it out asoullesstatic

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Go back to your gp, ask them o write to your consultant. Get your go to explain the discomfort and pain you are in and to ask for you to be placed on the urgent list.

I went in to to my go because of painful bones ( side affect of decepeptyl injections) she wrote to my consultant for me ushering me along the list.

Worth a try

X

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I have. 4 times. I was in this morning and she's chasing it up again but I am on the urgent list. The urgent list in Aberdeen at the moment is almost 12 months long. It's insanity here at the moment.

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Keep calling the gyny booking office too, tell them you’ll take any cancellation. Do it every few weeks, make them remember your name xx

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I'm going to write to my MSP and MP too. I've got the energy to be on the war path now hahaha. At least I can maybe put all this anger into something useful.

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