I’m feeling so angry. I saw a private endo consultant a few weeks ago who wrote to my gp to asked to be referred back to him on the nhs. I went to my gp where he referred me he gave me a piece of paper with my referral and said if I don’t hear anything but the hospital by the 13th August to call this number it was the appointment/ outpatient number. I called that number today and all they said is they have to tell us it’s an 18 week waiting list maybe even longer depending on wait. I can’t be waiting 18 weeks or more in this much pain. The pain is getting worse and is messing with me mentally. I’m in pain every day. I don’t know what to do I don’t wait to wait 6 months in this much pain is there anything I can do to make it go quicker. The consultant said I need to have surgery and an mri he believes I have stage 3/4 endo I feel so frustrated, upset and feel like no professional cares I don’t know what to do.
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Disneynala
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Hi, sorry to hear you are having such a horrible time
I know it’s not great to hear but I think waiting lists are long across the UK as there is a shortage of doctors which seem to be able to do the procedure. Cancer risks (understandably) are given priority which adds to the wait.
I’ve now been waiting for my lap for over a year on the nhs, Ive has two pre-ops and been to the doctors numerous times to chase. I ended up calling the scheduling office very two days as was getting desperate and I was finding the whole thing so upsetting. I went to the walk in because of pain and they suspected a burst appendix because I was so bad - they found it wasn’t that and sent a Gynae doctor to see me. He asked me to be referred to him and that was almost 12 weeks ago and still nothing....
In the meantime I have saved enough money to go private and I am having my lap this week. From private consultation to op dates it’s been three weeks and I feel like a huge weight and stress has been lifted
I know this might not be that helpful, and my case is probably an extreme wait. But I wish someone had told me a realistic view of how long I would of had to wait as if would have saved me a lot of heartache and frustration
Thankyou for your reply. I think I need to keep trying my gp or something the pain is getting worse. I can understand waiting lists and I was expecting it but in the past I’ve always had an appointment come through by now even if it’s 3/4 months away I just don’t want to be forgotten and left in pain. Thankyou for replying
Sorry to hear your in so much pain bless you. I'm currently in the nhs system and it's in a mess. I've gone on for over a year now being passed from pillar to post I could write a book !!!! If it were me I would get the telephone number for your new specialists secretary explain to them the pain your in and the waiting. Be nice but firm they can move you up the list and the consultant can definitely. Maybe ask to speak to the specialist I did and he moved me up the list. Laparoscopy has now been done for me I don't have endermetrois which is good. They now think it's nerve pain which I said over a year ago to them they don't listen. I'm going for nerve pain tests next week. Good luck keep going it's a battle but you can do it. It's the waiting and emotional side of it all and of course the pain it get you down Xx If you need anything just ask 😁
I'm really sorry you are going through this but unfortunately this seems to be the norm with the current state of the NHS. In my area, the issues with gynaecology are clearly down to cuts. First they downgraded maternity at our satellite hospital to midwife-led. Then they shut a couple of general wards in the main central hospital. Then they shut maternity in our satellite altogether, despite being at full capacity in the main hospital. Maternity and gynaecology in the central hospital are both in the women's centre and the more c-sections there are the less gynaecology surgery they can do, and gynae can no longer overflow to the general wards. Subsequently, after their gynae list got to 9+ months in March, the trust shut gynae to all but cancer patients, sending them out of the county, which has resulted in the lists there now extending. That's just gynae. My husband recently got an (out of county) appointment for Rheumatology for December, having been told their are no appointments available in our trust.
Earlier this year I was sent home after a haemorrhage to wait for an 'urgent' hysterectomy which they couldn't even give me a date for except they were looking at 5+ weeks. I was told if it happened again it would become 'more urgent'. It happened again within 24 hours of discharge and after that my husband refused to take me home until I'd had the op. The worst thing was I knew it meant someone else's op would probably have to be cancelled and I've been there myself. It's not the fault of the doctors and nurses, they really are doing the best they can.
I hope they take you seriously and bump you up the queue. All the best.
I couldn’t afford the private surgery or mri so he said he can do it on his nhs so he asked my gp to refer me back to him but nothing at the moment but I don’t think the specialist is able to refer me back to his own nhs as they basically get into trouble doing that now as you could do it years ago
Sorry to be repeating what others have replied. I'm 33 had 4 ups in the last 3 years, the last one full hysterectomy including ovaries mainly because of nhs waiting lists.
I had rapid regrowth endometreosis, and was no longer able to use hormones as suppressant so the endo would return just 3 months after surgery. Pur wait list from seeing you go to getting a laparoscopy are 9-18months. I was in so much pain I went to A&E, they sent me home with a bladder infection. I had private surgery 1 week later and she treated stage 4 endometeosis, twisted ovary stuck to my womb, twisted ovary with endo all it including the ligaments and the endo creeping towards my bowel. Stage 5 endo causes bone to fuse.
I hate to say this to anyone, no one knows anyone financial position etc but my local private hospitals are bordering London and at the higher end, and an all inclusive package for a laparoscopy including treatment if endometeosis is £4800.
Its unattainable for many, but screaming and begging at my go daily got me no-where so I just wanted to giv u an idea in case it is an option for you. So sorry to giv false hope if it isnt.
Can only keep everything crossed for you that you can get through the 18weeks, compared to many its shockingly not that long a wait (I swear I have been there I know the pain you're in, I.e. why I went private I couldnt cope anymore). I have had no treatment t from the NHs, all private, 20k roughly in total now. Its terrifying. I'm hoping I at least have 2 years with no symptoms so my private healthcare finally kicks in!
I wish you all the best. I found nurofen plus during the day and co-codomol at night the only way to cope though the pain broke through a lot.
It is absolutely barbaric. Sorry again you're suffering xxx
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Should I get a private MRI?
still waiting for hospital referral and unsure what to do…
Had lap but endo tissue remains
Gynae can't help, only pain clinic left....
Referral waiting times?
