I’ve just seen online that North Manchester Hospital now has a 30 week wait whereas it was 23 weeks. 😫
I’m at the doctors on Friday and would I be able to suggest getting moved to another hospital. I’ve checked and at Spire I can be seen in 15 weeks however I’m not sure if I’ll have to pay or will get it on the nhs.
I had a private consultation at spire last January I think and the gynae was really nice and an endo specialist.
I’ve done this, I’ve moved to another hospital, I’ve had to wait 20 weeks just for an appointment to come through the post and they now have to decide what the want to do with me, part of me wishes I’d stayed at my original hospital 😩 xx
I’m even on the urgent list and cancellation list but I’ve been waiting for 11 weeks.
I know other people need surgery, it’s just I can’t go through another period in agony and bed bound xx
You'd have to be re referred which basically means starting from the beginning so you could end up waiting even longer, have you tried phoning the gynaecology waiting list again to see where abouts on the list you are xx
Yeah but they won’t tell me. I’ve rang every 2 weeks but they say the same thing “we can see you’re on the list and will contact you when you have a date” xx
I’d honestly just stick it out, if you’re on the urgent I can’t see you waiting 30 weeks, you’ve already been waiting 11 weeks, once you get to 18 weeks you can contact PALS and they’d probably do more to help you move up the waiting list cos you’ve gone over the 18 weeks, than moving to a new hospital, there’s no guarantee if you move to a new hospital that they’d want to operate on you anyway, it really is starting from scratch x
Ladies that's honestly a joke the waiting list at my hospital is 5 weeks, although my appointment yesterday they had to put me in for an ultrasound as the next gynae appoint was December! X
I’ve been trying to get a diagnosis for a year now and because I’m 19, the doctors never believed me or said I was too young to have endo.
I wouldn’t mind waiting but the pain affects my life especially during my period and it responds to nothing and I’ve tried lots of painkillers xx
I was ignored for 7 years only got diagnosed last year. They tried different things to help but now I'm being told surgery is the only option left it just annoys me how some docs totally disregard you x
Yeah, it’s a tough journey to try and get diagnosed or at least get some answers. Xx
I’m so sorry you have got such a long wait and sorry you are struggling with the symptoms & pain.
I can emphasise completely as my waiting list is the same length of time between 30-35 weeks. I have also got my GP to write to my endo consultant and they’ve now referred me to an colorectal for my severe bowel symptoms & I’m hoping that will mean I have one op not two; if the endo is deeper then endo specialist won’t be able remove it and I’ll be left again with pain & symptoms . I’ve had 2 laps so far within 9 months and still feel no better as it’s left all over my rectum 🤢
The endo nurse has told me ladies move up up the waiting list if their GP writes to the consultant ( although she said to say I did not hear that from her 😏)
The waiting time should start from the date you were referred to the gynaecologist by your GP. Not when you were referred for the laparoscopy. Count the time and if it goes over 18 weeks do contact PALS 👍 they are breaking NHS guidelines and I’m not sure how these hospitals are getting away with this.
Have you thought about going back to your GP laying it on thick and say that it is getting worse ( which is true) and you cannot cope with the pain & symptoms as it’s impacting your quality of life see if they might contact the hospital on your behalf and get things moving 👍 you should not have to put waiting for that length of time with the that level of pain & symptoms.
Good luck xoxo
A nurse at my GP wrote to my gynae and I have a copy of the letter. I was referred to the gynae in January so it’s probably gone over 18 weeks now.
I’m at the doctors on Friday to ask about my shaky hands and low blood sugar so I will mention my pain as well.
Every morning, I’m in pain after having a wee and it can last for a few hours or all day xx
I get low blood sugar too and I know how scary that is. I get the shaky hands and sweating and feel like I will pass out. I now carry glucose sweets at work in case I have an “ attack”.
Write down all that is going on and definitely get the GP to write or contact the hospital.
Tell them about the painful when and after passing urine. They may mention that to the gynaecologist that is doing your laparoscopy; I have lots of bowel symptoms and my GP wrote too my endo specialist ( they weren’t listening to me) and now my GP listed that symptoms and the severity I’m seeing a bowel specialist (called a colorectal specialist. ) Admittedly they are aware that I have endo all over my rectum but they were prepared to ignore my symptoms. 🤦🏽♀️ My point is Perhaps you need to see a urologist for as well to investigate the urination issues. I’d push for one. My GP insisted I needed a colorectal specialist so maybe your GP can insist you need a urologist. 👍If necessary get someone on with you to fight your corner . If the endo is all over your bladder I doubt the gynae would be able to remove it; gynaes can only remove endo from pelvic organs.
These symptoms cannot be left like this.
Good luck with the GPS appointment hope they can do something to help you xoxo
I’ve wrote it all down on my phone so I don’t forget. I can’t seem to stop shaking which is scary.
And thank you ❤️ xx
You’re very welcome. I know what is like having to fight the medics it’s exhausting , but if your GP is good they can put a letter with the severity of your symptoms and recommend a urologist. A few weeks ago I was ready to give up felt like I was getting no where but thanks to the kindness and support on these site I decided to fight and you can do too 👍xoxo
hi is the shaky hands to do with the endo? as I get tremors shakes, if I leave eating for too long. Thanks
If you haven’t eaten for a while, it’s probably just low blood sugar. My hands still shake even after eating something sugary x
Hi, i really sympathise. I'd ignore what they're saying about urgent - urgent referrals are only done for cancer etc and are 2 weeks (I worked for NHS England who commission these services). Also the 18 week thing is out of the window and they don't actually have to do anything as the winter pressures meant that nobody was meeting them. Are you waiting for a BSGE specialist? If so wait it out - sorry I know that doesn't help. I am having mine last week and have waited since September. In April I looked to move to a different specialist as I felt same as you but it would have restarted the whole thing and would have meant another year to 18 months! NHS won't pay for spire treatment unless you get a lap date and it's cancelled and not rescheduled within 28 days. Keep phoning waiting list - they get sick of you but unfortunately with healthcare the loudest shouters are the ones who are heard. Good luck and sorry you're suffering xx
I honestly don’t know if he’s an endo specialist but he was recommended by the consultant at Spire who is an endo specialist.
I’m like the most impatient person ever haha and I’m like scared for the lap as it’s my first surgery but also want it to get answers xx
I would stay with them if they come recommended. I feel really bad for you the waiting is so horrid, it's my first one next week too and the wait has been super tough at times but I'm almost there and you will be too. It is unethical how we are treated at times xx
I feel your pain. I was meant to be in Edinburgh having my 2nd lap today but they called me to cancel on TUESDAY!!!! I was referred last MARCH! So 15 months on and I’m still waiting with no indication of another date....I’m stage 4 severe with my bowel being affected so requires 2 surgeons. I really hope you get seen soon xxx
Omg I’m so sorry! I don’t know if I have endo yet until the lap but 2 gynaes and my doctor think I do due to my symptoms.
Im scared the longer I leave it, the worse things could get. Xx
I really hope you get seen soon and get the answers you need. I’m 31 now and been suffering from around the age of 18 so it’s been a long road. The quicker you find out the better though hun so keep on at them until you get somewhere. Wish you all the best xxx
Sad, waiting for lap and feeling even worse
Waiting for 2nd Lap
Time from preop to lap?
