Referral waiting times?: Hi all, I’ve gone... - Endometriosis UK

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Referral waiting times?

bananasplit12 profile image
25 Replies

Hi all, I’ve gone to the gp since Feb 23 over pelvic pain, IMB, and plenty of other symptoms that came out to be a persistent cyst. My gp asked gynae advice and was told not to be concerned about it but she’s just referred me to gynaecology because of my other symptoms and thinks it’s Endo but I just wanted to see what anyone else’s waiting time was for being seen? I was speaking to a family friend and her hospital was 21 weeks but due to her symptoms they saw her in 6 and I’m trying to get a rough idea? Also what happens in the first gynae appointment I’ve got no idea what to expect😂

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bananasplit12 profile image
bananasplit12
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25 Replies
merlin-mimi profile image
merlin-mimi

hi there, I had to wait about a year for mine but I think covid got in the way, and is dependent on the area you live in.

At my first appointment I got asked about all my symptoms etc, had an internal scan and had an internal examination by the gynae (to see if he cld feel any endo inside). I was prescribed yet another pill to try and I wasn’t referred to surgery until my 2nd or 3rd appt, so if you are in pain and not getting anywhere, my advice is to persist. I recommend taking a diary of all your symptoms to show them and keep pushing for answers! I hope this helps 😊

bananasplit12 profile image
bananasplit12 in reply to merlin-mimi

Thanks so much for the reply I really appreciate hearing other people’s experiences so I know what to expect! Ive found an nhs symptom dairy that i thought about using but i wasn’t sure if it would just be overlooked but i’ll do it thankyou☺️

Looklikelara profile image
Looklikelara

hey I’ve just had a referral about 3 months ago, and been told that I will have to wait over a year to get seen by gynae! Very similar symptoms, cyst and fibroid , flare ups every month, currently managing with a tens and painkillers. this referral was after a 4 year gap where no follow up was made to my last appointment. Hope they see you soon and can help, treatment will vary depending on your symptoms and how you want to manage them, I would say expect internal examination/scans and I’ve also had to have 2 colposcopy at a similar age to you. Sending best wishes 😊

bananasplit12 profile image
bananasplit12 in reply to Looklikelara

Thanks so much for the reply! Gosh that’s such a long wait hope it all works out for you in the end! Don’t worry if you don’t know but can I ask do you know if it’s possible to ask for a laparoscopy at gynae? Ive heard so many stories about doctors just dismissing problems and telling people to practice watchful waiting and I’m just thinking I’d rather push for it to be looked at properly but I have no idea what I can and can’t ask for😂

Looklikelara profile image
Looklikelara in reply to bananasplit12

🥰 thankyou for the support! Yes you will be able to ask , they will give you more information but it’s quite a procedure from what I hear, depends on how you are managing with symptoms, fertility etc. 💯 as the other girls said keep a pain/symptom diary. Luckily there’s more awareness of the condition now, and more they can do. It’s a long road lol but find the best solution for yourself 😊 ❤️

KiwiCookie profile image
KiwiCookie

Hi! I first spoke to my GP last January, had 3 internal scans over the period of February to June, then I had to wait 5 months for a phone consult with a gynaecologist.

There’s a really really good PDF to go through on Endometriosis UK website under “Seeing an Endometriosis Specialist” highlighted as the “Consultation Questionnaire” - I went through that before my first appointment, it basically covers your history, symptoms and pain level so you don’t forget anything and the gynaecologist initially asked all questions that had been written down there!I was told to try the mini pill on top of the coil I already have - the gynaecologist was saying surgery is a last resort as they try to stop you from bleeding on your period first, the logic being no bleed, no pain.

Wait times will vary up and down the country, but hopefully you get some answers when you have your appointment!

Good luck!

Looklikelara profile image
Looklikelara in reply to KiwiCookie

Hi there, I’m not the original person who questioned but Thank you this is good to know for when I finally get my appointment, and yes I found no bleed no pain, took the pill consistently with no breaks for over 5 years to stop the pain 😩 xx

KiwiCookie profile image
KiwiCookie in reply to Looklikelara

Hi!

Thank you for responding - I’m glad to hear the no bleed no pain worked for you! I think that’s what they thought the mirena coil would do for me but unfortunately it hasn’t happened, hence the doubling up with the mini pill so fingers crossed it’s at least a temporary fix!

Hopefully you get some news about your appointment soon. Something other people have said on other posts is if you can to take someone with you to take notes during the consultation if you have an in person consultation as it can be a little overwhelming with all the info flying around.

Looklikelara profile image
Looklikelara in reply to KiwiCookie

Fingers crossed for you ❤️❤️ long road hey. Xxx

bananasplit12 profile image
bananasplit12 in reply to KiwiCookie

Thanks so much for the reply! I’ll give the questionnaire a go thankyou for that, I’m hoping they don’t put me on another pill as I had to swap to patches because the pills I’ve tried only made my symptoms feel worse, and I’ve heard the no bleed no pain logic from my doctor but after I’d been to another one I explained that I do still get quite bad pain without bleeding and she said that gynae doesn’t really bother unless it is with bleeding so I’m hoping someone listens😂

KiwiCookie profile image
KiwiCookie in reply to bananasplit12

Not a problem!! You may have to battle a bit with them to make sure they actually hear you - I’m just doing a trial run on the mini pill as I’m also hypermobile so when I was previously on the combined pill I kept dislocating things 😂 but the consultant listened to my concerns about going on any general hormone pill and suggested trying something new with a check up in 3 months.

I don’t have my notes on me currently from that appointment, but I’m fairly certain the consultant told me if I wasn’t bleeding but was still in pain they’d have to look into it further, so hopefully they’ll do something for you!

bananasplit12 profile image
bananasplit12 in reply to KiwiCookie

Thanks again! I’ve heard all kinds of stories some with really good outcomes and some horror stories so I’m just a bit nervous about it but I’m hoping all goes well! Sending lots of love and hoping all goes well for you!

lunaticdoggo profile image
lunaticdoggo

Hey, I waited 52 weeks after my referral before i got seen, after that the movement is pretty quick or in york it is at least.

For your first gynae appointment i felt the same! Super nervous! I just explained all my symptoms again, what was bothering me trhe most, luckily i already had several scans during the wait for my referral so the doctor could already review those. They also did an internal examination on me to have a feel of the pelvis / stomach etc. Team were easy to talk to and seemed really happy to listen

bananasplit12 profile image
bananasplit12 in reply to lunaticdoggo

Thanks for the reply! I’ve had 6 scans so far that have already been sent across for referral so hopefully it’s easier to explain my symptoms to them, I’m really nervous just because I’ve heard so many stories of doctors brushing it off as something else and just would rather get it properly checked out so I’m hoping all goes well! The clinic Ive been referred to has really good reviews so hopefully it all works out! Did you end up getting diagnosed and treated? xx

lunaticdoggo profile image
lunaticdoggo in reply to bananasplit12

Hey! I hope it’s as good as the reviews! In a way i think they’re more open to the. idea of it being endo because they’re specialists? idk if it’s true! my surgery is wednesday so we will find out lol! X

BloomingMarvellous profile image
BloomingMarvellous

Endo UK have a symptom checker etc which is worth viewing. It’s also worth using an App like Flo to keep a handle on things. Wait times are highly variable area to area. It’s very important that the radiographer/sonographer has had specialist endo training as Standard training doesn’t cover this and it often is missed because of this. Ensure who ever sees you at Gyane dept is an endo specialist.

bananasplit12 profile image
bananasplit12 in reply to BloomingMarvellous

Thanks for the reply! Ive just had a look at the symptom checker and Ive got literally all barring 1, I don’t want to be self diagnosing but I have mentioned all of them to a few gps Ive seen and so far only 1 has took me seriously and agreed she said it’s likely endo while the rest have brushed it off as anxiety or an STI (which came back negative) or me not using contraceptives properly (which I have) so it’s just not given me much hope for my referral. I even had one doctor say to me “I’m just not sure what you’re expecting me to do about it”😂 so I’m a bit nervous for my gynae appointment

Cocoacupid profile image
Cocoacupid

I’m not sure I think the first time I had to wait at least six months I think as I was transferred to gynea in the august of 2021 and then saw gynea in the march of 2022 and then I had scans and things were ok apparently but then was transferred again around christmas 2022 and had an emergency gynea op which took three months but then I was told for a lap you normally wait around a year or more depending on symptoms . Xx also I think it also depends where you live as well

bananasplit12 profile image
bananasplit12 in reply to Cocoacupid

Thanks so much for the reply! My gp referred me to a different hospital than my usual because the wait was less time and online it says 19 weeks so I’m hoping it goes fast😂

Cocoacupid profile image
Cocoacupid

I hope so for your sake at least I have a name and a diagnosis for a condition I didn’t really know about but since covid got so so poorly and in pain throwing up solidly for ten or more. Days dehydration and not able to walk very well xx

bananasplit12 profile image
bananasplit12 in reply to Cocoacupid

Gosh that sounds awful you must be so strong! I’ve never been that bad yet but I did spend all of my boyfriends birthday in bed in pain so I’m hoping they do look into it! I keep experiencing new symptoms and I’m not sure whether to tell my gp or to hold onto them until I get a consult at gynae but hopefully it works out xx

Cocoacupid profile image
Cocoacupid

if you get new symptoms if it’s me I just go doctors but as you are on the list to be seen maybe wait till you go or if they come to be so extreme then go doctors hun that’s my advise.

Emmaja_ne profile image
Emmaja_ne

Depends where you are. I’m north west uk. Got referred august 22, had my first initial appointment may 2023, MRI June 2023 and finally have surgery booked for the end of the month.

bananasplit12 profile image
bananasplit12 in reply to Emmaja_ne

Thanks for the reply! I’m also north west UK so hopefully it’s not too long as i’ve heard a lot of people waiting over a year just for the first appointment xx

Looklikelara profile image
Looklikelara

hope it goes well for you! ❤️

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