Still waiting: I'm still waiting on my... - Endometriosis UK

Endometriosis UK

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Still waiting

RhiannonT
RhiannonT

I'm still waiting on my gynaecology referral. I know it can be as long as 3 months wait but I don't know what to do. My symptoms are getting worse and I'm worried. 😔😥 I'm in so much pain most of the time, and it's really dragging me down. I thought that having a high CA125 count and high white blood cells would've sped things up a bit possibly? I'm so annoyed right now. 😔 Does anybody have any advice?

Thanks

Rhiannon

20 Replies
oldestnewest

So sorry to hear that , I found out by accident after burst appendix '

I would have hoped it will be quicker than that 3 months with pain pretty dire.If I can help I have just joined the forum today after diagnosis so be nice to speak if just to compare notes

RhiannonT
RhiannonT in reply to Mo1111

Thanks for your reply. Sorry to hear that's how you were diagnosed. Had you had any symptoms before that? I think another call to my GP Monday to explain what's happening. 😔

Mo1111
Mo1111 in reply to RhiannonT

Very painful periods for 20 years never thought endo until appendix op,who knew always in pain just got on with it xxx

I managed to speed things up by paying to see a consultant privately who specialised in endo who then re-referred me back into the NHS so the pathway was a lot quicker. Of course this means taking a little gamble as I’m not sure this is what every consultant does. However I gave my friend this advice and she’s just been booked in for her first lap on the NHS In around 8 weeks time so it maybe something worth considering. Private consultation is around £180-200 and I found my first one by googling ‘private consultant endometriosis’. Best of luck xxx

RhiannonT
RhiannonT in reply to Catness

I might do that. Thanks very much. Xxx

C2691
C2691 in reply to RhiannonT

I also did this and got seen very quickly on NHS with same consultant I’d seen privately. I’d say it’s worth trying. X

RhiannonT
RhiannonT in reply to C2691

Okay thank you xx

Sorry to hear this, nhs say to have surgery within 12-18 weeks they told me I was right up the 12 week mark when I got my letter , my pre op was in that week I got letter and my op was in 3 weeks when I got letter , I’m in on Wednesday as my first surgery was cancelled due to no bed they then have to take you within 28 days after if it’s cancelled ... xx

I don't even know if it's endometriosis. Still waiting on my gynaecology referral. I just feel like breaking down in so much pain. 😔😥

The NHS wait time guidelines are in place from referral to start of treatment. Has your GP actually sent a referral yet or are you waiting for them to send? If you're waiting on them I'd seek a second opinion with another doctor. If you've been waiting to see a gynaecologist for that long you're still within the guidelines but if you go over the threshold then you're well within your rights to make a complaint. nhs.uk/NHSEngland/appointme... See this link for more information.

RhiannonT
RhiannonT in reply to h_grahh

No no she's done the referral. So I'm still waiting, I'm in Scotland so unsure if waiting times are different. Thanks. X

h_grahh
h_grahh in reply to RhiannonT

You can check the average waiting time for your hospital on the NHS choices website. I'm not 100% sure how Scotland differs but I'm sure the 18 week maximum waiting time is a nationwide target. Short of going back to your GP and asking what's causing the delay or asking for an open referral and seeing someone privately. All the best xx

The nhs have different waiting time depends on where you live. However I only got put on the list for a lap a few weeks ago after seeing a private endo specialist at spire which cost £214 I was waiting around 4 months for get an appointment to see gynaes who were useless xx

When did your referral get sent?

As others have said you can check for waiting times at your NHS hospital; at least you would then know what to expect.

For my gynae appointment I waited 8 weeks from when my fertility specialist referred me ; the nhs choices gave a 16 week wait on website I was lucky ; but he pushed it through quickly because of an issue on my scan and the level of pain I was in. I do think that they make exceptions for some cases and some are seen as more urgent.

It’s horrible waiting on a referral for an appointment date. I’ve had 2 laps within 8 months; because not all my endo was removed due to being in bowel area I’m now been referred to an endometriosis specialist by my fertility specialist. I do understand how frustrating it is to be waiting; before my 2nd lap they knew some was left on my bowel and knew I had bowel symptoms as well as gynaecological ones and they didn’t organise a bowel surgeon to be present at my 2nd lap🤦🏼‍♀️a gynaecologist can’t treat bowel endo ; means more time off work, but what can I do 🤦🏼‍♀️

I find by phoning the departments regularly can speed up referral appointments; I have done this both times for my laps and waited 2 months for each lap 😀 I think if I haven’t heard from the endo clinic in a week or so I’ll start harassing 😂

Really hope you hear soon xoxo

The best thing to do would be to phone the appointment team at your hospital to see what the waiting list is like, or if you have the secretary’s number for your consultant, that would work too.

I’ve been referred to a few different hospitals within Glasgow and all have been completely different waiting times despite being under the same nhs board - not sure where in Scotland you are but it might be the same there too. Once the referrals gone, my gp told me that they can’t actually do anything to speed up your appt, so it’s only if we phone ourselves they’ll give out any info or try and see if there’s anything they can do to help x

I went in last July with a suspected ectopic pregnancy which thankfully want but found a cyst on left ovary. They monitored it and it grew from 4cm to 8cm by November. I insisted I have it removed even though wasn't in massive pain with cyst but was when I had period excruciating in fact. Had diagnostic op 15th Jan which found stage 5 endo and confirmed it was endometrioma. I was hob smacked stage 4 I mean I had no idea just thought painful periods were part and parcel of having a large baby back in 2013. Had follow up apt with gynaecologist 15th March he advised hysterectomy and said would refer to endo specialist with his hospital. Just had apt through for 7th June which is in keeping with 12 to 18 week NHS guide lines. I then hope to have full op approx 5 months later. It's a waiting game I've asked go for strong pain killers to manage it in meantime so on naproxen and codeine find naproxen much better as some side effects to codeine. Hope you get a diagnosis soon it makes all the difference and you can then at least get answers. I also found endo diet and excercise helped massively with my pain. I didn't do any excercise at all and my diet was really bad fatty foods, alcohol and caffeine were big factors. It's a lifestyle overhaul buy it had to be done I can't live life in pain for two weeks a month.

Thanks so much for replies everyone. I have looked up NHS Lanarkshire waiting times and is 18 weeks standard. I'm on Naproxen 2 X a day at the moment and for the most part it's helping. I am uncomfortable and so tired more than anything. If my symptoms persist I will think of going private, it's just cost wise. Been fobbed off with IBS for years and only in past few months has a female GP listened and suspected endometriosis.

Wee update guys. Just spoke to NHS Lanarkshire referral service. My referral is through, 4 weeks it's been there and the waiting time is 12 weeks. 😔 I've been put on the cancellations list though so if one comes up I'll be offered that. X

Good news everyone- I have my referral through. Seeing a gynecologist at Monklands hospital on the 20th of May. 😊 He is a consultant gynaecologist for NHS Lanarkshire as well as a private consultant for BMI Ross hall hospital in Glasgow. He has a special interest in keyhole surgery and coloscopy too. I'm so nervous now. Any advice for initial consultation? Thank you. 😊

Hi Rhiannon, I’m new to this and reading through some older posts. Like you’d been, I’m also waiting for a NHS Lanarkshire referral. It was made by a surgical consultant after a suspected appendicitis ended up being a ruptured ovarian cyst and confirmed endo at a lap earlier this month. How have you gotten on? I hope you’re doing well.

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