Booked to see an endo specialist

Last 7 weeks have not been fun with back pain and pelvic pain and so in desperation have booked an appt with private endo specialist in Cardiff. I have to feel like I'm doing something. And I don't mind the £140 fee if it means I get to talk to an expert. I have seen 2 gynae's in Swansea and have been unimpressed with both. One diagnosed me with 'central sensitization syndrome' and said I i 'probably had a bit of endometriosis but just keep taking the pill back to back'. The second one didnt want to send me for a laparoscopy as she asked 'well what do you want us to do if i we find it'. And i Replied 'well remove it' to which her response was 'there's no point it will just take come back anyway'. So while I am on a waiting list for a laparoscopy I really, really have no faith in the people doing the procedure. 

The specialist I'm seeing does have links to BSGE accredited endo centre too. So if he says it doesn't sound like endo then I will take his word for it. But more than anything I just want to talk to someone and be listened too and have my concerns taken seriously. 

7 Replies

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  • Good luck, let us know how you get on.

  • Hi Larrie, how long do you have to wait for the private appointment? I'm waiting for an  appointment on NHS but I have a feeling that I will have to wait a few months just to see the specialist (last time I've been waiting 4 months). Now I'm considering to go private which will cost £200 in Hull but I'm not sure if it will be any quicker x

  • I phoned up last week. I have an appointment on the 26th of this month. There were earlier appointments but I specifically wanted one of two specialists who are listed on the BSGE endometriosis centres.  So if i were you I'd do some research find out the specialists who have links with the endo centres and make sure you book to see them. I'm going to a private hospital and know the guy I'm seeing is one of the top two guys with the endo centre.  Its worth giving them a call and seeing about their waiting times. It is a fair bit of money. (there's always the credit card :) ) but i'm doing it for my mental health as much as my physical health.  Good luck :)

  • I know what you mean about mental health, i think it is one of the many 'side effects' of endo... Will you then go to pay for your laparoscopy private too? I have decided to wait to see if the NHS appointment comes through in the next say 8 weeks and if not then consider paying private. The thing is, I would be paying to see the same specialist as i would on the NHS, so its a bit pants to be honest, but i have to see if i can cope until the NHS appointment comes. I hope it all goes well for you, would be great to know how you get on x

  • yeah its hard to know what to do. I am not paying to have private laparoscopy. not a chance in hell i can afford that. Haven't worked for ages and spent all my savings on fees for a masters course.  Plus seeing a specialist is £140 and i can afford that as i have barely left the house in months so am not spending much money.  Think the cost for a lap runs into the thousands?... i think. And the two gynaes ive seen havent been specialised in endomteriosis so just wanna talk to an expert which i dont get a chance of doing here in Swansea. It's hard to know what the right thing to do is. £200 is a lot of money but waiting  2 months isn't so bad either. Although it does depend if you can cope like you said. Maybe write a list of all the pros and cons :) 

  • Yeah i think the cost is in the thousands at least and i am hoping to be able to wait it out so i don't have to go private. I feel quite lucky that the gyno i saw first knew a lot about endo and then the second gyno i saw is an endo specialist who is relatively local. When i spoke to the receptionist at the GP, she said that they would need to know if i decide to go private as they will take me off the NHS list. This makes me think that if i pay for the consultation privately then i will have no option but to pay private for any treatment that he recommends. This is why i hope to manage my pain until my letter comes through. Hopefully on the 26th you will know more and will have benefited from speaking to a specialist :) 

  • I've paid to see a private specialist before and you don't have to pay for private treatment they reccomend. They can then refer you back into NHS services then. The waiting list in swansea to see a gynae was 6 months last year so i paid to go private to speed the process up. Only the chap I saw was useless and not endometriosis specialist. The only convo we had about it was at the end of the consultation when i asked him about it and he said "yes you probably have a bit of endometriosis but just keep taking the pill back to back".  Which explains why im prepared to pay to talk to an expert and actually have a sensible conversation about it. Haha. 

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