Moving to London, wondering about endo specialists?

[riotsnotdiets]

Hi all, as some of you know I had a negative laparoscopy a couple of weeks ago but I really am not convinced by the gynae that I saw here in the south west (I think he was more of an obs specialist) I had adhesions which he said weren't related to endo and claimed that he couldn't see any gynae reason for this, but this doesn't explain why I have such heavy periods and pass out, or why they are so painful. I am moving to London with my gorgeous partner in a couple of months, and my mum (bless her) has offered to pay for me to see a private gynae endo specialist if necessary as we both feel that the symptoms I have do point to gynae issues, and especially endo. My mum's a NHS nurse and proud so she wouldn't be offering to pay if she didn't think this was likely. I'm just worried something was missed in my laparoscopy. So, the question is:

Does anyone know of any good endo specialists in London (preferably Archway area but would travel) who also then work on the NHS - I can afford a consultation but no way could I afford a private lap! Alternatively does anyone know if any of the endo centres in London work from pre-diagnosis on? I am aware that some of them only deal with diagnosed patients, and some of those the most severe. Obviously you can't recommend surgeons on here but maybe PM me? x

[Brownlow]

The London ones will be on this list bsge.org.uk/ec-BSGE-accredi...

x

[riotsnotdiets in reply to Brownlow]

Lovely - I guess it's just a case of ringing around and asking if any of them deal with endo pre-diagnosis? x

[Brownlow in reply to riotsnotdiets]

I'm not sure where you got the idea that endo has to be diagnosed before you can go to one of these centres. Perhaps I've missed something. The truth is that many general gynaes can't always spot endo.

[riotsnotdiets in reply to Brownlow]

Thanks - good to know. I think I read somewhere that some centres only deal with severe/complex cases of endo. I'm guessing I wouldn't fit their criteria as obviously if there is some there it's fairly minimal or Mr. General Gynae would have seen it. Update is that my GP has referred me back to Mr. General Gynae for follow up (she was not too convinced that 'constipation and congenital adhesions' is the cause of my problems as I don't have constipation except when anxious as for the lap!) but I'm not sure she will refer me to UCLH as she isn't convinced that the lap would have missed endo that's present. She said I could possibly ask for a second consultant's opinion, though, if I'm not happy with what the general gynae says in my meeting with him.

[Brownlow in reply to riotsnotdiets]

That's really good that your GP is questioning this. Also her mere mention of getting a second opinion is also really good. Either the gynae or your GP can refer you for a second opinion. You aren't entitled to one but if refusal to refer you for a second opinion results in you suffering of getting worse they would be responsible.

nhs.uk/chq/Pages/910.aspx?C...

adviceguide.org.uk/england/... Scroll down to the section on second opinion.

[riotsnotdiets in reply to Brownlow]

Well, I mentioned wanting a second opinion and she said possibly but I have to have follow up with first gynae first (I think she was surprised they discharged me immediately after lap, adhesiolysis and mirena insertion, without any follow up). I think she is trying to push me to accept that endo isn't the problem, and that I have pelvic pain syndrome possibly caused by nerve hypersensitivity due to the congenital adhesions which requires a referral to a pain specialist maybe. I think this is a reasonable shout, but I'm worried. I've thought about this and how I explained it to my boyfriend was that often endo is missed by non-specialist gynaes (maybe not commonly but it does happen) and my symptoms pointed to endo before the lap.

I could leave it, and accept the morphine/tramadol/whatever else they want me to take for the pain, and accept this pelvic pain syndrome diagnosis (although that's not what the consultant diagnosed me with, he said it was constipation pulling on the adhesions which caused me pain - I have no constipation and the adhesions have been removed so why am I still in pain?). I'm just worried that, if we come to trying for children in a couple of years, I don't want to let any possible endo continue to take hold. I guess with the mirena in it would help a bit but I'm not sure it helps with endo that is already present? x

[Brownlow in reply to riotsnotdiets]

It's good that you will get the gynae's explanation when you are awake i.e. not post op! You can point out where the theory is flawed and say that you still need a diagnosis as the one being given does not fit with the evidence. Personally I wouldn't take the pain management route without a further opinion. If you were getting a builder to build an extension to your house you'd get at least 3 quotes and sets of references. Surely this is more critical! I might be wrong but I think you have reached the limit of this gynae's experience.

As you mentioned, if you can't get referred for a further opinion, or even if you want to speed things up a bit, you could pay for a couple of consultations privately. When you go back to your gynae try to get copies of any scans or even photos of the op so you can show these to the private specialist or you can get access to your records nhs.uk/chq/pages/1309.aspx?...

I don't know if they give copies or how it works. Maybe you could even photograph your file?