ADVICE PLEASE DOCS JUST DONT LISTEN????

Hi all. Iv been to docs today to get my urine tested again iv drunk loads of water and I'm well hydrated but there's still a lot of blood in +++ all what I'm feeling and research iv done and advice iv got off here is all pointing towards endo. Because my kidneys are fine well in ultrasound they look it. I believe it's probably in my bladder and iv possibly had it since a teenager. Anyway the doc is on about general gynae and has referred me to that I mentioned my feelings and that it would prefer to get seen by a bsge centre and she just nodded her head and said well we've referred you to gynae now so well take it from there. I genuinely can't be bothered going through this headache the choices I have ln referral are like up to 19 week wait. Can I just find a private consultant that works in nhs aswel pay for the initial appointment and then take it from there with them to put me on nhs waiting list with them if they think I have endo. Iv also been referred to urology but seems like it will be same situation with waiting. Advice please on what to do with finding a private consultant that will see me and put me on waiting list nhs. Can I do that even if iv been referred but not yet booked an appointment. This situation so confusing. Thanks in advance for any replies? X look at my previous posts to see my other symptoms if you wish. Thanks ladies x

[emmaibiza]

Hi hun sorry you are feeling as you are. If you Google a bsge centre it will have the full list on there which hospitals are bsge centres and the name of the consultants so you can find a consultant near you and it will have where the private appointments are. I think I Googled Endometriosis specialist north west when I was searching for the same reason a couple years ago. Where do you live I can help you find someone?

I live in Blackpool but my general gynaes was rubbish so I looked on Google for a Endometriosis specialist and found a top Endo specialist at Stockport hospital even though he has now moved to Wythenshawe. I paid £250 for a consultation with him, just to talk but he then referred me to himself at nhs for the surgery.

I also have blood in urine and had bladder problems since I can remember. My gynae found Endo everywhere including bowel and bladder but no Endo inside the bladder but they did find a condition called interstitial cystitis, Google that and see what you think. It's not common to get both Endo and IC but they call it painful twin syndrome if you do have both.

Let me know if I can help you xx

[Hidden in reply to emmaibiza]

Thanks so much for reply I really do think iv got some endo going on somewhere I live in Leeds hun. I would appreciate any help at all I just want to be able to speak to a specialist get their opinion and if they agree get them to sort me out. I'll look up I c now I don't have no pain just real bad frequency when I'm hydrated I was thinking maybe blood in urine due to dehydration but it's still there and my urine is a healthy colour. Iv always had a trace of blood in past but never had it investigated now there's more and it'd just constant no infection no stinging when weeing. Whole lot of other symptoms that are just progressing slowly since I stopped Brest feeding in may. Now I'm thinking iv had it since young and more has happened since c section I don't know. But I just want it confirming and sorting. Thanks for reply x

[emmaibiza in reply to Hidden]

I'll inbox you now with some info hun as we aren't allowed to say consultants name etc on here.

Your bladder sounds the same as me. I use to wee over 50 times a day but since my gynae consultant cut the nerves to my uterus a couple months ago it's halved now some days I go 15 times which is so much better then before. My gynae consultant did say that cutting the nerves to uterus can also help my bladder frequency and it has I'm made up. Like you I have clear urine but always blood present. I do get stinging and signs of a uti but that's part of the condition I rarely have a uti.

If you can travel to see my consultant he will do surgery if he thinks it's needed, which I think he will and he will do a cystoscopy at the same time to check your bladder so you get it all done on the same op.

I'll inbox you now xxx

[Annat123]

Hi

That's exactly what I did, I had a private consultation with a consultant who also works at the NHS BSGE centre, then I went on the NHS waiting list for surgery with him and a bowel surgeon. The cost privately for consultation for the Gynae consultant was £190 and bowel surgeon £170. Think costs depend on where you live. (I'm in South West) As I needed both surgeons for the op, I was quoted £10,000 for the private surgery. To be honest the experience I had at the NHS hospital for surgery and aftercare was amazing and I don't think I would have got that privately.

I think you may still need a gp letter for the referral privately (I could be wrong, if you ring the private hospital to check what the referral process is they will be able to clarify for you), but there is nothing stopping you doing this if you have also been referred on NHS. I did it privately to speed it up due to the amount of time I was having to take off work due to endo.

Hope this info helps.

Best wishes

Anna

[Hidden in reply to Annat123]

I didn't need a letter from my gp. It doesn't speed things up, it's just so that the consultant has a little bit of info on you and your case before he meets you. It didn't effect anything for me.

[gld87]

I too went private for my initial Endo specialist consultation, and he then referred me over to his NHS service. If I hadn't have paid the £200 I'd still be waiting for the initial consultation appointment now! Best of luck Xx