Advice and experience of private endo consultation

[Bea0503]

Hi all, I’m looking for some advice please.

Could anyone share with me their experience of going through a private clinic for potential endo diagnosis please?

I have been going to the GP on and off for about 8 years and finally made some progress back in January with a great GP referring me for a second scan where adhesions and possible endo were indicated. I have now been on a gynae referral list since Feb with no progress due to covid back log, so interested in going private to either confirm or rule out endo but would really welcome any advice or experience of private and if you would recommend/think it’s work it. Thank you x

[EndoSuckss]

I have recently gone private and, if you can afford it or have private medical insurance, then I'd highly recommend it!

Faced with the possibility of a few months wait just to see a consultant, then potentially 12 months for surgery, I got an open referral from the gp and sought out an endo specialist. I've just had a lap this week - went from first consultation to lap within 6 weeks!

[RJB212121 in reply to EndoSuckss]

Hi. Sorry to jump in on this , I’m just reading through posts . How much did it all cost privately ? Have you also had scans indicating endometriosis or going on symptoms? X

[EndoSuckss in reply to RJB212121]

Hi! No worries at all ❤️ Happy to answer any questions I can!

So far, it's been about £5,000. I was already diagnosed with endo in 2019, but this time round had internal and external scans to check before the lap to confirm the endo was back. Its really difficult to diagnose endo without a lap, so mostly you'll find the consultant will have to act on symptoms and 'suspected' endo until a lap can be done.

I also found out during the lap this week that I have adenomyosis - which, again, I'm not sure shows up very easily on scans. My consultant said my uterus is twice as big as it should be because of the adeno, however, this wasn't indicated on my recent ultrasound scan!

Theyre awful conditions that are so difficult to diagnose, manage and treat!

[RJB212121 in reply to EndoSuckss]

Oh thank you 😊. Omg I know , I’m so fed up of being back and fore Doctors / hosp for years now having investigations, think Iv had a camera through every hole in my body 😩😅. Apart from a laparoscopy that’s the only thing Iv not had done . But now finally they are investigating endometriosis with a blood test coming back high for ca125 levels I Was sent for a ultrasound straight away . All came back clear though . Which was obviously amazing that they didn’t see anything like Cancer, due to the levels . But at the same time annoying that nothing shows , with the pain And discomfort I’m in . So I’m waiting for an appointment now just to have a consultation. So it’s all going to take ages . I did read that a few people went private for at least the consultation, as then , when /if you get referred for a laparoscopy the gynaecologist can put you back on the nhs but saves the waiting for the consultation time . So I may try that . So you had your first lap on the nhs 2 years ago ? Was that a long wait ? Sounds pretty painful with what you have . Hope you feel better after the surgery x

[EndoSuckss in reply to RJB212121]

With my first lap, obvs pre-covid/pandemic, I think I had my first consultation around 6 weeks after referral from my gp, and then my lap about 3-4 months after that. So it wasn't awful - although the NHS waiting list was getting longer at that time so my local trust had contracted some appts out to the local private hospital to try and keep them down. So I think I was lucky having my lap so quickly the first time as I was in the right place at the right time.

This time, my gp made me aware at the time he referred me that the waiting times were really long after covid!

[RJB212121 in reply to EndoSuckss]

Ahh that’s not to bad pre covid waiting times . That’s about right with the things I’ve had done in between also . I know it’s just the way it is now with covid 😢 it’s the same for everyone I know but it’s hard to except waiting so long when you are suffering . Thanks for your help 😊xx

[RJB212121]

Hya , hope you’re ok and not in to much pain ? I’m in the same boat , referral appointment is up to 6 months wait they told me 😩.I’m in Wales where are you based ? X

[Bea0503 in reply to RJB212121]

Thank you I hope you’re okay too - I’m in Nottingham - I hope you get seen soon too xx

[Keke123]

I had to go private to get diagnosed. This was a while back but spoke to the lady for 2 minutes, she said I had endo but needed a lap to confirm, 2 days later I was in for the surgery and it was all done and dusted.

Then I was back on the nhs for further operations etc. Which I could have afforded to stay private but worth it for the initial diagnosis 100%!

[Vickster23]

Definitely worth it for me. It was diagnosed that my endo had come back in June. My first op was in January and would have been much earlier if it wasn’t for covid. I then needed to see an endo specialist because my bowel was involved. That operation for excision & a hysterectomy for adenomyosis was in March, again delayed by covid. Without going private, I’d still be on a waiting list to see a consultant and would then have probably gone onto the waiting list for an op twice. The consultants I saw were so understanding and compassionate. I didn’t feel like I needed to convince them of anything. Good luck

[Blue261]

I think its really worth going private. Its more your time as you are paying for it and so you can ask as much as you want. Plus you don't have to commit to anything after this. Also go to an Endo specialist and not just a gynaecologist as they work differently

[Bea0503]

Thank you so much everyone for your advice it’s so helpful and I really appreciate it - I think I will definitely look at a private appointment with an endo specialist and hopefully get some progression from there 💕