Referrals: Hi everyone I wanted to ask... - Endometriosis UK

Endometriosis UK

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Hi everyone

I wanted to ask whether any of you have had private treatment/ consultations more than once? My daughter was diagnosed in November and had a laporoscopy to remove endometriosis. She was lucky enough to get treated privately under my husbands work health cover. I’m aware that you can’t usually be referred privately with something which has already been diagnosed so if she needs further treatment/ investigations later on what happens then? Her consultant advised her not to go down the NHS route as there is such a long waiting list.I’m obviously thinking ahead but it would be interesting to hear from anyone out there who has been through this and advise? Ideally, from seeing how much my daughter has suffered, it would be great to be able to have regular check ups to monitor her. I’m sure fellow sufferers must feel the same. What about finding out whether your fertility has been affected by endo?

Thank you- I’d be grateful for any advice. 😊

26 Replies

HiNot sure this helps, I initially went private for consultation and lap. Then back on NHS for referral to BSGE consultant.

I’ve had private consultations before and after op.

Anything private was paid for rather than insurance.

If the consultant is NHS he can add your daughter to his list for further treatment. If you have insurance won’t they still pay as it won’t be a new condition as far as they are concerned, it’s ongoing.

HiThank you. I may need to get some advice from our current health provider I guess. It’s all a bit of a minefield isn’t it! I’m quite happy for her to be seen on the NHS but it’s such a long wait to see anyone.

Thanks so much for your advice x

Good luck, 🤞 with the insurance company, let us know how it goes 🙂Do you suffer with endo?

Thank you. No, I don’t have endometriosis but my daughter does x

It can run in families, hope you didn’t mind me asking. I hope it’s not too stressful for you, she’s very lucky to have you helping 🙂 I hope she’s managing the condition reasonably well, there’s is loads of advice here and on endo uk site.

I'm on my consultant's private and NHS list and have regularly seen him on either basis over many years depending on circumstances at the time. I don't have insurance, we just pay. Private treatment is so much better in my experience. Not that he treats me any differently, there is just so much more on offer, especially time!

Hope this is helpful!

Percytimms in reply to Dogmad6

HiThank you for your reply. I think the massive bonus with private care is that you get seen so much more quickly. It’s just the cost! Take care x

Dogmad6 in reply to Percytimms

It is very expensive but you do get seen quickly. Often I've felt I just couldn't wait five minutes to be seen never mind weeks or months. We've just had to prioritise our finances towards my health, no choice. I've had severe endometriosis all my adult life. It's a vile condition. Hope you are able to get the best for your daughter.

Percytimms in reply to Dogmad6

I totally understand what you are saying. It’s an incredibly cruel and painful condition. It’s horrible to see someone you love suffer so much and you definitely don’t want to wait!I hope today is a good day for you and I really appreciate your comments. Take care xx

Dogmad6 in reply to Percytimms

Thank you. It must be horrible for you seeing her suffer. I prefer to suffer myself than it to be my daughter! Hope your daughter can have good outcomes. XX

Percytimms in reply to Dogmad6

Yes, I wish it was me on a daily basis! Xx

I've been treated a few times privately with my work insurance for same issue. I had op a couple of years ago to remove cysts and it wasn't till I was opened up endo was found so now that surgeon wont do my new op now I need another. I could have had surgery again private but haven't been able to find endo specialist that is covered under my insurance, did have all the investigation part private so made it all alot quicker mri etc. Now back under NHS and waiting for surgery. As long as your insurance covers endo specialist should be fine. Hope all goes well xx

HiThanks so much for your reply. So did your surgeon decline to do further surgery because he/she is not an endo specialist? It is such a minefield out there! Take care and good luck with your next op xx

Yes so basically when I went private initially it was to remove ovarian cysts so he went in not knowing I had endometriosis. He did his best to remove but less than 2 years on and I have cysts again, swollen tubes and endo affecting my bowel, bladder even my appendix is having to be removed this time. He won't touch me which is understandable it needs to be an endo specialist and given all the organs involved id need other specialists too ie bowel surgeon etc. Was gutted as when I found out all returned I thought would be seen to private again in no time but there are no endo specialists on list of surgeons my insurance covers seems its due to prob costing too much. Looking at surgery in the next month or so likely will be hysterectomy xx

Bless you- it sounds like you have had a really rough time. Thank you so much for sharing your experience. Take care xx

Yes the same I been diagnosed with endo stage 4 and the nhs surgeon couldnt touch me so he referred me to a endometriosis center and on the waiting list can I ask u why if u dont mind me asking why has ur tubes and ovires been effected so bad was it the endo?

Not at all ask away, yes I believe the endo can lead to a multitude of other problems still learning as I go but its quite shocking how many organs it can affect. I've got cysts on both ovaries same as I did last time I had surgery. I also had and have got now what they call frozen pelvis so basically organs that should be free to move around are fused together with the endo its all very complex. I have terrible problems with bladder incontinence at the moment and bowel problems too its so exhausting. Hope all goes well for you 🙏 xx

Just to add no doubt you may know about them but my cysts are endometriomas so caused when endo is in your ovaries x

Yes I have one In one side a large one 12cm which they got rid of but now has come back :/

That's a big one then my last biggest was 9cm. This time around had mri and biggest 5cm gotta have another mri on Sunday as that was Oct and done private so they wanna see where up to before surgery x

Hey. I’m sorry to hear about your daughter. I’m 20 and was diagnosed 3 years ago under NHS. Took 18 months to get diagnosed in total. The longest wait time I thought was being referred to a gynaecologist. The surgery times didn’t take that long but it depends on the demand and also how many others are on the waiting list too. Took me about 2/3 months from confirming a surgery to actually getting it. My referrals to a gynae from GP took anywhere from 4-6 months. GPs weren’t much help as I had 5 separate doctors opinions and had to change doctors practices. It’s a lot harder through NHS because I personally haven’t revived any follow ups after surgeries and it’s a nightmare getting referred back. Hope this helps x

HiThank you so much for your reply. You are so young as well! It’s not fair that you are all going through this horrid illness. It’s interesting to hear your experiences. It took my daughter 7 years to get a diagnosis. It’s the whole GP system which seems to be the hardest bit. I’m finding that everyone’s experiences are all so different but it’s really useful to hear.

I hope you have someone looking out for you. Take care and thanks for taking the time to respond xx

I'm the same took me so long and iam still on waiting list for a endometriosis surgery

Hi yes so iam only 27 I been diagnosed with endo stage 4, which is very sever and is in my bowels aswel so basically it took me nearly 3 years to get the dagionse and then was on a waiting list for a keyhole surgery from nhs to seee if it is defo endometriosis and which it was so after that my surgeon said it somthing he cant clear for me and I was put on list for a endo center instead and so I been on the list since last September nd just found out that the refferal was not send my the consultants which had made me very upset with the NHS as I been addimited so many times in hospital nd they kept saying to me we see chasing the refferal which was not even sent so now I'm been told to wait another 6 month to seen my the doc just fir a appointment! It I'd very unfair what mistake they gave made and bea use of that I gave go through this pain daily but I spoke up and have been chasing them to do something beacuse I had enough nd yes endo can effect ur ferility as it can block ur tubes and ur ovary to stick together and cause u scarring inside. It be best to take somthing to stop the monthly bleeding nd ovulation as that wht causes the endo to grow

Percytimms in reply to Meworange

Hi and thanks for your reply. So sorry to hear you have had such a rough time. It seems to be a lottery out there regarding treatment. Take care xx

Meworange in reply to Percytimms

Yes I know I might actually start looking at private treatment myself

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