I got my referral to speak to a gynae (so I'm not even sure if they're an endo specialist yet!) About 6 weeks ago. I chased up with my doctors as I hadn't even heard if the referral had been received. I've been told the wait list for the initial consultation is around 14 months..
Each week my pain is getting so much more painful. It is the first time I have ever given in and gone to the doctors for stronger pain killers this week but it was unbearable. Normally I'm a powerhouse and just storm through (whilst moaning about it) buy the pain is horrific. Any time I need to pee, or a BM the cramps start to feel like half way through labour pains. And ovulation/period pains are like 9cm labour pains... in fact sometimes I genuinely think all of labour and birth was easier!
And my cycle- I have 2 to 3 periods a month, does anyone else on here suffer like that? I have around 5 days between bleeds. I literally have a period, then have 1 day pain free before ovulation happens and then 4 days later I am at the start of my next period. Its very very frustrating.
I have tried every contraceptive (coil, implants, different types of pill) and I am lucky enough to have babies (1 girl and then twin girls). Even breast feeding didn't work to help reduce the pain as suggested by my previous specialist before we moved..
Apologies, I think I just needed to moan and feel sorry for myself. It just feels like unless you know what the pain is, you have no idea, and I know you ladies understand.
All the love and strength to you all!
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Bumblebee11
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You can check with the hospital that your relevant referral has been received. I’d contact the gyne department directly to check and let them know you’ll take a cancellation (if you can) as this may bring forward your appointment time. You should also go back to your GP and hammer home how much you’re bleeding they should know that’s not normal. They should be able to send an expedite request (it might/might not speed things up but it’s worth having the urgency in writing).
For reference.
My initial gyne referral was Nov 22. I saw a locum sept 23, had a scan Nov 23 and then saw a diff consultant after a PALS complaint who wanted an MRI Feb 24. She then referred me to an BSGE specialist, who I saw in July and I’ve just last week had my laparoscopy. The BSGE specialist was concerned with all my bleeding. I’m running mercilon back to back but got around one week without bleeding every three months. She’s the only one that’s taken that seriously. They’ve done lots of biopsies to make sure nothing dodgy is going on.
Don’t be afraid to complain. I’ve had to make three PALS complaints regarding my local gyne referral, all of which resulted in process getting my case moving forward.
Alternatively, if you can afford the funds, it could be worth paying for a private consult with a specialist and an MRI. You can then be transferred into their NHS waitlist but at least then you’d cut out all the initial waiting. It’s not ideal, and you shouldn’t have to but it’s an option.
Remember to fight for yourself! Wishing you the very best. X
I was given a referral after some pelvic scans back in Nov 2023. My referral letter originally said something like the standard 18 weeks or so they normally do. I called back in May as I hadn’t heard anything and they told me I’d likely be waiting 12-14months still on top of what I’d already waited.
Since then I’ve also been getting worse and it’s affected my life a lot. I got my GP to send another message through to the gynae to try and put a rush on my referral and I believe it’s helped a tiny bit.
I think it really is about kicking up a fuss and pushing forward for more support. I know it’s disheartening and sucks after already experiencing what you’re going through. But you’re not alone, I still don’t know the full picture myself.
I was in same situation. Had a referal in january 23, saw gynae in july 23 and she signed forms to have lap surgery was told 12 months. I was always in so much pain. A&e trips as at the time was suspected endo, 8 lots of antibiotics in 8 weeks and lost over a stone as they kept saying over phone uti. Was in hospital 4 times in december then in early jan had a letter for pre op assesment and was told within 3 months. I got a call on a friday for surgery the following tuesday 2 weeks after my pre op.I believe all the calls to dr and trips to a&e help speed it along. After my lap surgery in jan i was told it looked such a mess inside they couldnt do anything i needed a emerg mri
6 weeks later i had mri was told severe endo, adeo, fibroids, 2x 5cm endemetriomas.
Have been on zoledex for 5 months now and signed the forms in may for a full hysterectomy and was told 12-18 month wait.
Please keep pushing dr and bugging gynae and even trips to a&e i think helped mine speed up
I know exactly how you feel, it’s so frustrating to have to wait that long. And then there is a long wait the other side for a lap if that’s what you decide to do.
I think if you’re in need of answers quickly I would recommend paying privately for a consultation with an endo specialist if you can. It costs £200-£300 and after you have spoken with them you can then ask your GP to re-refer you to that specialist via the NHS. That’s what I have done and it means that I am under an endo specialist consultant who will perform my laparoscopy rather than a general gynaecologist. It’s worth the money to be seen quickly and have a specialist examine you.
Hi, sorry to hear how much pain you're in, I hope you get something soon. I've had the same with bleeding 2/3 times a month, but I've been on Zoladex and just decided to finish it two days ago and try deinogest. The only way I've been able to get a specialist in 6 years is to pay for a private appointment (therefore choosing the specialist myself) and have a private mri etc before asking my GP to refer me as an NHS patient which has worked. You definitely see a difference being an NHS patient again but the luxury was there for a bit at least! Crazy that we have to pay just to get taken seriously but there's usually no other way. If you have the money, I'd definitely do it, it's ridiculous how much it is (£150 for initial appointment for me) but having a specialist made all the difference as they don't tend to give up as easily.
Hi Not sure of your area I wad in a similar situation, I had initial consult rather quickly (Sept 23) after getting a fantastic GP who instantly thought endo, since then it's been a spiral. Mri planned for dec 23 which made them pass my case over to BSGE center, I'm still waiting for my initial consult (I'm NW and BSGE is NE as we have nothing nearby)
I went to pals after being left just waiting, I said its not appropriate and I need help while I'm waiting. They fobbed me off with painkillers for a while but I continued battling for better support, I finally got an appointment with my local gyne who put me on zoladex which has changed my life.
Keep battling. Keep going back. Say you understand theirs a wait but you need something better than painkillers!
Just wanted to address the gynae / specialist problem: I was referred to a „normal“ gynae but it mattered little as she ordered an MRI and had the specialist team look at it as well. The surgery I‘m waiting for is also with the specialist and not her. So overall I found it made no difference, the gynae is the one I see but she‘s clearly communicating back and forth between me and the specialist team. Don‘t know if I just got lucky though! Also this clearly only works because the hospital does have a BSGE centre, I‘m just not really being seen by them (except for the thing that really matters which is the surgery).
I just wanted to take a moment and say thankyou so much to everyone who has taken time to reply. I am also very sorry that you have had to reply as it means you are a fellow sufferer too!
I've had an internal ultrasound, and they found that my bowel, left kidney, left ovaries womb and cervix all moved as one with no separation at all. Do you think it is worth me asking my GP to refer me for an MRI as well? Can they do that?
I am going to start saving for a private consult. Unfortunately here they start from £500 as I have read a few other posts on here to recommend it- so I thought I'd at least look into it. Hopefully it will cut some time off the wait list!
R.e the bleeding- I have never heard of zoladex? I have literally never had the bleeding investigated and the doctors don't seem worried at all. I think they read "diagnosed with endometriosis" and assume that this is all just normal!
I am hoping to push for a hysterectomy- I tried when I had my twins (c section) knowing the scarred tissue was going to cause horrific future pain but they refused. I am 31 now so I am hoping they will agree!
Hi lovely, I'm so sorry to hear your going through this as I'm going through similar and it's horrific. Have you tried a tens machine at all? Not a miracle cure but it does at times ease some of my pain and would recommend it.
Keep on at the consultants if pain is far too much and don't be afraid to speak to pals as they can help if your not getting anywhere.
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Removal or not of ovaries
CA125 level 89
Is this fair according to NHS Constitution ?
help please :(
53, Bleeding on HRT and history of Endo
