hi there has anyone had any experience of getting a diagnosis by seeing a private Endometriosis consultant? I've been back and forth to my GP with the same pain and symptoms for about 5 years now, I've have had multiple ultrasound scans, which they've just fobbed off as they can't see anything. I'm getting really tired of trying to explain and justify the pain I'm experiencing and just want to get things sorted rather than just being offered stronger pain killers each time. Is paying to see a private consultant who understands it all worth it to get some answers?
Seeing a private consultant?: hi there... - Endometriosis UK
I went privately. I posted my story a while ago. It may be different to the path you take but hopefully it'll give you an idea of what happens / time frames etc.
Happy to answer any questions you have including searching for a specialist / costs / how to pay etc.
Thank you for sharing this, there is so much here I can relate to - reading it all has helped a lot! I'm so glad that you have been able to get the support you needed and take control x
I paid end of last year, best £200 ever spent. If you do make notes, inc history and symptoms. I didn’t get a referral from GP, I went direct so no pre judgment. He could see test results on the system. I initially went to talk about fibroids and came away with endo diagnosis, hadn’t crossed my mind.
I diagnosed myself and went private to get it official. I'd been back and forth to GPs and gynae consultants for over a decade and just fobbed off. I had stage 4 endo (3 weeks after seeing a gynae that said I just had fluid in a falopian tube). I paid £200 (2015) and he then put me on his NHS list for the op.
But you need to make sure you see someone on the BSGE list not just a gynae. If you look up their list on their website the NHS clinics have NHS addresses. However, you will generally find that the private ones also do NHS work. So, like me you can get the diagnosis privately and then the op on the NHS. Be prepared for your doctors being somewhat miffed you went behind their back even though you just proved you were right.
I did, and definitely don't regret it. My GP could barely book me the right appointments so it seemed like a good idea to go private. Endo found and excized within 3 months of my first appointment and also did an ovarian drilling procedure while they were there for my ovarian cysts. That was 18 months ago and unfortunately I'm still experiencing pain but even in the midst of lockdown I managed to get another appointment with my consultant virtually and we're underway with further investigations. So I would absolutely recommend it, even if you pay private for the consultation then go NHS for any treatment.
Glad u asked this question as I’m in the exact same place . Keep been given ultrasounds and pain killers but not offered anything else . I’ve been considering going private too . Can I ask if the bsce co sultans works for nhs . Do they tend to offer private aswell?
Take a pen and a short list of questions on the day. Feel free to pm me if you need more advice on finding specialists etc.
Thanks so much for this
Hi, yes I did a lot of research on endometriosis specialists in the area & paid to see him privately. He then referred me back to the NHS for scans / surgery etc.. if I didn’t do this who knows how long I would’ve been waiting for! Sadly many doctors not gynaecologists recognise endometriosis! Definitely do your research prior. If you’re on Facebook Nancy’s Nook have a list of all specialists I believe
I really struggled to get my gp to refer me to the BSGE specialist, I tried twice and they just had no clue how to do it. So I paid £200 for a private consultation and it was so good. It helped my partner understand what was going on in my body too.
I’m now waiting to see if the fertility clinic can get me a referral for surgery with the BSGE centre. But I’m saving up the ££££ to pay privately if I have to as I don’t think my local doctors are able to work through the paperwork to get me an nhs referral sadly. We shall see though!
Good luck and hope you get what you need from the specialist xx
Yes I have stage 4 endo and it took 13 years of being fobbed off and insulted by the nhs to be diagnosed.
I was only diagnosed when I discovered and couldn’t conceive (and never will thanks to the nhs)
I had surgery but my endo returned very soon and had to go through whole process again, this time I went privately and wish I had done to begin with.
You can either get private insurance for £40 ish a month but some time’s they won’t cover any open referrals.
Also sometimes employers offer a private healthcare scheme.
Alternatively an initial consultation is £150-£200 and following that it often fast tracks further investigations / treatments that can be done privately or on the nhs.
It’s extremely sad and awful that we have to resort to going privately but it is honestly so worth it to be listened to, believed, not rushed, spoken to clearly and have a thorough treatment and investigation plan put in place there and then.
Good luck and best wishes to you xxx
I had an ultrasound too and it showed up nothing. I paid to go privately and it showed I had grade 3 endometriosis-there were adhesions and scar tissue everywhere. The consultant I had said the only way you really know if its endometriosis is to have a laparoscopy. Xx
I didn't go private but I had lots of scans and bloods etc. And GP said all looks normal. I finally said to my GP I'm not leaving the room until I get a gynaecologist appointment, then at the gynaecologist appt I said I'm not leaving the room without you referring me for a laparoscopy (unless things have changed since I was diagnosed this is the only way to know for sure).
I had stage 2. Worth paying privately if you can't get help from GP but if you can push the NHS can get you there.
Good luck and sorry about the pain, it's awful!
Yes! I have been to 6 consultations that fobbed me off saying I was normal when I knew I wasn’t! After 1 private gynaecologist! Someone believed me and agreed!
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