Hello endo warriors! I will cut my story short as my history is simiar to all of you, fighting with endometriosis. After i have been discharged from the hospital following a misunderstanding with my consultant's secretary thinking I do not want histerectomy, i have been on mini pill for almost a year, little or almost no pain, but knowing that despite this endo is spreading in the background. I decided to have a private consult with a doctor with interest in endo and see what he will say about my condition as I cannot carry on like this and ignore my disease just because i am not in pain. My question/fear is what will I do if he says I need surgery but he won't accept to put me on his NHS list to have it? I cannot afford to have it private, I am making a financial effort just to go for the consultation. He works for Northampton hospital, one of the 2 big hospitals in my area and i have been treated/ discharged from Kettering , the other one. I asked my GP to refer me to Northampton to be ready in case the doctor accepts to treat me there, but the GP lied and didn't send any refferal and i think I will have to go back and beg for one again. It is like he is punishing me for being discharged from the other one. What should i do if the doctor won't put me on his NHS list? Should i still ask to be reffered to his hospital and be treated by another doctor or ask to be reffered to the one that discharged me? What can I do if my GP stil refuses to refer me to any of them? Sorry for the long post but I already have nightmares that my condition will get worse and nobody will help me as I cannot get into a hospital. Please some advice dear ladies. Thank you and God bless you all.
Private consultation and NHS: Hello endo... - Endometriosis UK
Private consultation and NHS
Hi I have gone private before for a consultation and then been put on the NHS list. At the time of your consultation all you need to say is you can’t afford private surgery and to put you on the NHS list. I’m sure they can’t refuse you. A tip though for when you are requesting you go onto the NHS waiting list for surgery is to ask what list you will be going on as they all have different timescales. Such as the urgent list, category 1 or category 2 etc ….. as this will give you an idea of how long you can expect to wait x
Hi, I saw a private consultant and he added me to his routine nhs list. It is a 70 week wait 🥹
Hi Pisi,
I'm very sorry you have been treated like this. It always seems to be a battle to get treatment. A privte consultant will put you on their NHS list, I don't think you need to worry about that.The only way they would refuse you is if they didn't think your endo was bad, but if you are honest and say you aren't in pain then they will let you wait.
The bigger isssue is have you chosen a really good private specialist who knows a lot about endo ? Be sure they are a gynae with lots of endo knowledge. What you need to do is get a scan and then see the specialist so they can actually see what is wrong, I'm not sure how much the private consultation will cost you but you will probably then need to be reffered for a sacn which will take a long time then see the gynae again for the results.
I know it's a long way but if you take the train to London there is a scanning place where you can get a scan by an expert and then see him afterwards for indpenedent advice, he will refer you to any surgeon you want. it costs aboyt 400 pounds all in but just a consultation is not much use without the scan .Private consultation is about 150 minimum then scan 400-1000 then another app to get the results is another 150 so it will cost more. The place in London is the bets in the business and they will see you without a GP referral if you already have a diagnosis. That way you could get it all sorted out much more quickly and you will know exactly how much the disease has progressed.
I hope you get some help very soon. Good luck.
Hi,
I agree with Avourneen, seeing someone that specialises in endo would be the ideal.
Professor Davor Jurkovic at The Gynaecology Centre in London, is great at finding even small patches of Endo. After the ultrasound, he gives you advice and sends the information via email.
Good luck
hi there, I actually used to work at a private hospital in Northampton and know lots of the consultants there! Who have you asked to see?
I have also paid for a private consultation then been added to the NHS list, it definitely cuts out a large amount of waiting time but as someone else has said, you will still need scans before surgery. If you can also pay for a scan that would probably help - I paid for my consultation and scan privately so then got added straight to the NHS surgery wait list, rather than the scans wait list then surgery etc. I hope that helps!
Hello..Thank you very much for your reply..I booked an app with Clement von Wideking, the lead of endometriosis team at norrhampton hospital. He works atThree Shires Hospital., the private one. I read that they have been setting up an endometriosis centre at northampton hospital and he is the one leading it. I am thinking of paying for a scan as well cause i know there is no point of an appoint without it. Do not know how much it will cost me. the appoint is £185 and the scan will be on top of it. Hope it won't be £1000.
I also saw Mr Von Widekind and he was really lovely and understanding about the condition, I worked with him in theatres as well and know he is very good at what he does, you will be in good hands.
You can phone the hospital and ask for a self pay quote on the scans, I think an ultrasound is usually about £300.
Oh,, thank you very much. I am so relieved now knowing that he is good. Can i ask if you had the scan at the same time with the appoint? And was it done by him? As know that he is very specialised in imaging and it would be an extra point to be performed by him. Otherwise i think i will need another appoint for a scan and another follow up with him to discuss the results and that will be extra expense. I apologize if i am bombarding you with questions but i do not know anyone i could talk about this. Thank you very much.
For balance, I had the opposite experience privately with Mr CVW. Patronising and rude, told me that my cyclical vomiting was probably all in my head because I was so upset that I had been unable to conceive. Also stated that my back /leg pain wouldn’t be anything to do with periods/endo. Plus, when I mentioned that I was no longer worried about fertility because we had finished trying, he said Oh, we’ll see about that, as if I was going to change my mind! Shortly after my consultation/scans with him, I was in hospital having an emergency operation due to severe/deep infiltrating endo blocking my bowel. I’ve continued learning about endo since then - and I sure hope he has educated himself, since he has declared himself an expert! (Sorry to be negative, I have heard both pos and neg about him from others, I just don’t want anyone to walk in there trusting blindly like I did…)
I am really sorry about what happened to you. Was it recentIy? i hope he will be ok, it is kind of my last resort in this matter as i have already been at Kettering. I know they all fob us off like we are crazy and the pain is all in our heads. Can i please ask if he was the one doing the scan or somebody else and he just told you what he saw? I think without a scan it is pointless for me to go privately. just to pay to see him.
Hi Pisi- it was about 2 years ago now. I’d like to think that I’d stand up for myself a bit more these days. Sadly, I went with him because I was unhappy with the female private consultant I had seen (his colleague), and I was very unwell and rather desperate at that point, as well as being largely ignorant of the reality of endometriosis. He did an internal scan himself, and discussed it with me during and after. Now, of course, I don’t trust that he was qualified to interpret what he saw! I wish I’d researched & paid for an expert sonographer, then got myself into a really good endo centre for treatment (not just one that is conveniently near me). I only had to pay a small amount towards the private consultations, as we were covered by a scheme with my hubby’s work at the time. But I regret every penny. I should have either paid for the best or pushed with the NHS. But hindsight is wonderful…
Oh, and to cap it all off, I found his secretary to be both incompetent and rude. Oh joy!
hi - sorry to hear this , we are in the same area as I am now been informed my GP will refer me to Northampton hospital even though I also got a consultation privately and told they won’t refer me etc… My thought is to call your GP for another consult call to ask why the referral hasn’t been made and ask that it is pushed through …I was very direct with my GP about my rights and he was very apologetic that you are entitled to where you want your treatment and they can refer you to Northampton Hospital if it is in your catchment area which it is . He also was clear that GP cannot refuse a referral based on going for a private consult so I would fight back as sometimes they do give you wrong information. If you need to vent I’m in the same boat and nearby keep going!!
Hello and thank you for your reply. I will have my private app this week and i went to see my GP 2 weeks ago to ask for a referral to Northampton just to have it in case the consultant will put me on his Nhs list. I had to tell them I am in a lot of pain otherwise I wouldn't have gotten an app with my GP just for a referral. they will simply tell me they haven't got any. Is it the same with your GP? He prescribed me some painkillers and i asked him to reffer me, he said ok and when I left he told me to wait for the letter with the referral. It has been 2 weeks but in the meantime i checked my medical record on NHS app saw the latest app with my GP and there was no mention of a referral just the medicines prescribed. Just to be sure i checked back in time and found the notes about my latest referral made by GP that was in jan for another problem and department. So they put down in the notes when they give you a referral so that is why i know he lied to me and didn't refer me. Now i need to go back again, ask for an apoint, tell them i feel bad and hope i will get one, but i think they are fobbing me off because i have already been treated at Kettering hosp. And all the time there is another GP i see because i have to take whar appoint they offer me not choose. I am already very stressed. I am afraid to tell them about the private consult, you are right it shouldn't matter as it is my right but ... sorry for the long post.
hi Pisi ! I’m sorry to hear of your very frustrating situation, I too am in a similar one. I don’t know if I can answer many of your questions but all I will say is the GP simply cannot refuse to refer you in any case- it is your absolute right to request referral anywhere. My mother in law worked in the nhs for 40 years and is an advocate of things being done right- as annoying as it is we have to keep pestering our gp as much as it takes to ensure a referral is made- they can’t tell you no. I guess what I’m saying is don’t ever let them make you feel like you’re being a nuisance- it’s ok to call every week until they confirm a referral has been made if you need to (this is the approach I’ve started taking anyway and it’s going better so far!) I hope you can make some progress soon, it really is shocking how badly we are dealt with. Don’t give up! Sending love and positivity your way 💪🧡
I waited for a referral for two years only for things to get seriously bad for me and to find out a referral was never made because all the specialists quit some time ago. Like thanks for letting me know. I can't even explain how much I hate the health system right now. I forced myself to go to work in pain and pay taxes for them to f me over time and time again. So I totally understand how you feel. Hope they say yes to you x
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