For those of you who have had surgery for endo treated privately can you share what I can expect at my inital consultation, what next steps were? I have preemptively sent my most recent MRI/Ultrasound and medical history. Was an examination carried out at first consult? I’ve realised today this might be a possibility which is stressing me out as I can’t endure a speculum. Will my NHS scans be sufficient or have they been for anyone else which has done the same?
I’m in a tricky spot waiting for my case to be reviewed at MDT meeting by my local BSGE centre. I believe my symptoms should make me a priority/severe case, however, knowing NHS, probably not. I’ve now reached the point where I’ve really got no choice but to look into paying privately for surgery, however, I’d be gutted if I proceed before actually finding out if the MDT review does make me a priority which means I might not need to wait a year (plus). These private surgeries are so much money, there’s also a worry of it growing back whilst I’m still paying it off, which would be so upsetting/disheartening. I know I should remain positive but that doesn’t come very easily to me.
I guess I’m just wondering if my inital consult is June (private) and my MDT review (NHS) is (hopefully) July/August, do I need to know how I want to proceed right away once I’ve had the private consult? I’ve never had any private medical appointments before it’s an entirely new world to me. Also, if I do proceed with private, do I stay on the NHS waiting list or will they remove me?
Thank you!
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Hi, I went private after an extremely long NHS wait and not really being able to cope etc any more, and so can maybe answer some of this. With me they did want to examine at the appointment, but I think you can maybe ask beforehand and obviously I don't think they can make you/if you already have scans etc showing things it might be rather less necessary so perhaps just discuss with them. In terms of timings I was keen for ASAP and had surgery within about 2 months of getting in touch with them as i was in so much pain and they prioritised me etc so I know they can sometimes do that, but equally I think they may well be able to tailor it to your preferences re waiting to know the NHS MDT outcome. For me tbh I still had to wait ages post MDT discussion and agreement for surgery, even though I had deep infiltrating endo in multiple places, and the communication was extremely poor throughout my treatment journey (maybe partly due to the pandemic) which is part of why I got to the point I did re going private. I don't think they will remove you from the list unless you tell them that you're going private/want to be removed (and I maybe wouldn't do that til you've actually had it personally), esp if you'll still want ongoing follow up within the NHS. Hope that helps and best of luck x
I’m at a bit of a loss at how they can justify leaving us on waiting lists for so long. It’s taken me eight years to get an MRI confirming what I suspected all along, even knowing it it doesn’t speed anything up at all. It’s appalling.
I’ll speak with them re. Examining me. I think I’m resigned to the fact I’ll be paying privately, I’d just like all of the information before making a decision. That said, I don’t trust anything they say now so going private and actually being more in control of process would be much better for me. I didn’t know if the private hospital would update my doctor, who would update the NHS BSGE centre. Now I think about it though, my doctor doesn’t do much so probably not… I absolutely won’t tell them should I decide to go for it.
My standard of living really is poor now, I have DIE with Bowel involvement. My uterus is currently completely stuck to my bowel in an unnatural position. I’m in pain every day, can’t lie down/sleep in certain positions. My bowel symptoms are worsening by the day, so I don’t actually want to wait around. I don’t have children yet either and we cant even try due to severity of pain. It’s been that way since 2020.
Thank you for sharing. Would you say the surgery helped significantly? I keep seeing all sorts about how pain/symptoms are back after a year/two. Do they offer you advise on following treatment privately for hormones etc. to stop regrowth or would that be down to the NHS to do?
Hey, I'm so sorry you're going through this, it all makes me so angry tbh, just as my own experience has, and thinking of you and hoping you can get the care you need through whichever route. One thing I would say is don't be afraid to a) complain (e.g. through PALS) whoever appropriate, particularly re additional delays on top of your long wait to diagnosis already, etc, and if you're not hearing back and so on, and also to turn up in A&E if not coping l, as apparently this can sometimes help expedite surgery. I would also recommend the endometriosis UK local peer support groups for both advice on specific topics, and general solidarity. My surgeon did advise on which hormones to switch to following treatment, and changed my coil over during the surgery, but it may depend on your own specifics (and you may need to pay for that follow up consultation to get something prescribed). And on your q about things coming back after surgery - everyone is different and tbh unfortunately this is the same whether private or NHS. For me I had a relatively pain/symptom free period of about 6-7 months; after that unfortunately symptoms have gradually come back, though there's a lot less on my scan than before, so I assume it's just superficial lesions at this point which I guess is something, and by adding in a further pill my symptoms are now more under control again (which I'm sure wouldn't have been the case without the surgery). So yeah for me there's no question that it was worth doing, even though of course I wish I'd had longer without it coming back etc. Take care x
(I have also had further follow up through the NHS in terms of scans and changing my hormonal treatment etc since then but yeah everything is a v long wait generally, as usual)
Really glad it's helpful 💜. And here's the link for the support groups I mentioned before, in my area they're approx monthly but might be a bit different in different parts of the country - endometriosis-uk.org/suppor...
I have a bit of a different story. I was on NHS and they suspected I had endo did an MRI and then said I didn’t. I trusted my gut and pushed for a second opinion and when private for this and it was the best thing I did. First appointment was online so I was not examined - they went over my whole history, symptoms, possible next steps depending on the review of my MRI. he asked if I could send it my most recent MRI and they looked at it again and found endo on the MRI that I had had done by the NHS.
Second appointment they confirmed the endo diagnosis and said that surgery was the best option to remove it. They said when they go in they expect to find something but if they don’t then that is a very slim possibility. They said they would put me on the list and it would be 3/4 months for the surgery.
I had several questions about fertility so I sent them to my consultants secretary and my consultant rang me and when over everything one evening. I have had calls with both surgeons to explain the surgery. They have been really good as I asked for my surgery to be done after a specific date due to work and probation and sick pay. I am due to have my surgery in June. So from getting the diagnosis in February to surgery in June will be about 4 months and would have been less if it was not for my work situation.
What I would says is that when I went to my doctors about something different they had on their system I had an endo diagnosis which they didn’t before I went private. But if you speak to the consultant and explain I’m sure it would be fine and ask them if you can stay on the nhs waitlist whilst you make up your mind
Thank you for sharing, this is really helpful. I’m putting together a list for the consultant (private) so will see what he says re. Being left on the NHS list.
Hey! I went privately (still waiting for an NHS appt that apparently meant to be had in Feb this Yr!)
I got my GP to send over any referral they'd sent to NHS along with my scan results, however as nothing was seen on those so the consultant didn't bother to repeat, he did his internal examination and then booked me in for my op there and then for 4 weeks later.
Then it was just the standard pre op and normal process for an op with one follow up consultation after.
Best decision I made to go private. Good luck with it all
Thanks for sharing. I’ve preemptively sent all my scans, which have confirmed DIE, so I’m hoping they’ll be good enough! I feel like I absolutely won’t regret going, it’s just hard when I’m financially getting into debt for it. Bitter pill to swallow!
Hi there, I provided scans carried out by the NHS to the private clinic but the team insisted a MRI is carried out to get a better picture of things. After which I was booked in for surgery within weeks.
It's your health and you shouldn't compromise. Ask questions when you go private so things your way but listen to the experts they know what they are doing and see several cases on a daily basis.
Thank you! It does help! I’m creating a list of questions, I think they already think I’m a little neurotic though. I’ve sent scans, medical history, a letter detailing my symptoms ahead of time to make sure he has absolutely everything. I don’t know what it is with these consultants but I go in and black out 😂 forget absolutely everything.
That's all very normal. Good idea to make a list and have all your queries answered, after all you are paying for the service. Good luck with it all 🍀🤞🏻
At my private initial appointment they did not examine me, run any scans, or do anything really! They strongly pushed surgery (unsurprisingly as the doctor pushing for it gets paid a lot to do it) and weren't really interested in discussing other options. I hadn't been able to see an NHS gynecologist and had no clue what endo was, so I really wasn't able to navigate the appointment well. I wish someone had warned me about that, as ultimately the surgery removed by endo but my symptoms are the same. That might not be everyone's experience, but it's worth being prepared for. After the surgery, I also had pretty bad follow up care. But at the end of the day, I was able to have the surgery within a matter of weeks.
Ah, I’m sorry to hear this. That’s really difficult. You would think they would start from scratch if you hadn’t got in to see the general gyne previously. Was this with a general gyne or a specialist centre? I’m hoping since I’ve booked at the specialist centre to get better treatment than I’ve had previously x
The doctor was a specialist in endo, yeah. I think the main thing is to keep asking follow questions and for clarifications to make sure that you feel like to have the information to make an informed decision.
Hi, Yes I did go private on a operation not offered by the NHS for Endo and Organ distortion. As I was offered a Hysto and bowel removal by the NHS. At the time I was 26. All was done on the 1st meeting. I was at the Parkside Private Hostipal in Wimbledon most of the day. I chose the team that operated on me from a list. The Open Operation happened a week later. I was very ill before. It was a long operation and 10 days there. The accommodation, room great, food great. I arranged a private Bar of alcohol for visitors. The room phone was expensive. Food could be provided for visitors ar extra cost. The Billing was very detailed. My recovery was slow the 1st 3months. I wasn't expecting a great outcome, but 6 mths on I was back in my job. There have been several small operations for growths and cysts since but all simple Keyhole. My bowel is difficult again, ridged with ulcers and I am awaiting immune suppressant drugs.I feel its a great opportunity to go private. If you have private HealthCare make sure you carry on paying after this as you should remain covered. My divorce if I'd realised about it could have been carried onto a Policy for me.
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