Private or wait for bsge centre?

[missaitch]

So... I have a decision to make. Thoughts welcomed 🙂

I’m at the very beginning of this. ‘Suspected’ endometriosis and haven’t yet seen a consultant.

I’ve had the referral confirmation through to the endo centre in Wakefield. BUT no clue when my initial consultation will be. I’m on a waiting list and the receptionist couldn’t give me any idea on time. This centre is a specialist place so would be (most likely) best for treatment.

I’ve had today confirmation that my work health insurance will cover my BUT they don’t have this specialist on their list. Have given me a list of three. One says they treat endometriosis though they’re not registered on BSGE.

So choice is... go for the quicker option but might not be best in the long term. Or hold out for the nhs referral without an end in sight?

Thoughts? I’m flip flopping and it’s the pain half of the month which is colouring my thoughts. Any advice is appreciated.

[Jawaireyam]

Hi hope your well as you can be,

Omg yes the ‘suspected endometriosis’ and the waiting that comes alongside this seems like forever!

Oh really, with this covid everything has been put on hold and it is so hard being in pain and not even having a diagnosis, it is really tough I remember going from one doctor to the other and not having clear answers really frustrating . Oh really were you referred to this specialist? As if it is specifically for endo then most likely you will get the best treatment for this.

Oh no really that is so annoying, I mean you could contact them regarding this and seeing which option is more beneficial for you.

Personally, I went private to begin with as I couldn’t deal with the waiting and needed a second opinion and then I was referred through nhs and that was really fast within a matter of a few months my process began and I began getting treatment.

I completely agree it’s so difficult being in pain and you just want to be treated as soon as! I would say weigh your options out see which process may be faster speak to the ones that say they treat endo and see how much it would cost etc and the other centres, as you could go private they may be faster at this but could cost a lot depending on what they do which would be scans and that to begin with.

Hope this helps, best of luck x

[dir95]

Hey,

I'm in a similar situation!

I went private (through work cover, offered three gynae's, went with one who is a endo 'specialist' although couldn't find on the BSGE site). I had an initial consultation with him where he suspected endo, then had a lap where he confirmed stage two at the back and left of my pelvis. I have a follow up booked with him at the end of November.

I'm now a couple weeks into recovery and my GP suspects the endo is also in my bowel (the above gynae did not check my bowel during surgery). So I'm torn! Do I ask my GP to refer me to a BSGE centre (I have an appointment with her today!) or do I wait till my follow up appointment with the private consultant to get his feedback/opinion?

From searching it also looks like the Doc at my nearest BSGE centre could technically be covered by my private medical insurance but I don't know how it works - if I can get an appointment privately at the BSGE centre or if it has to be through the NHS?

Personally I'm glad I got my diagnosis quickly but am frustrated I might now need another surgery to get a FULL diagnosis. If you're able /willing to travel could you maybe look at other endo centres further afield and see if anyone there is on the approved list for your private medical? Get the ball rolling with a specialist to get diagnosed then stay on the waiting list at Wakefield to manage it going forward?

[Melon365]

Hi Missaitch

I would do both if you can. I have been waiting for a BSGE appointment for 6 months. It has been 6 months of no we will not accept your referral to then accepting it, for it then to be rejected again a few weeks later. It is very unlikely I will be seen before Christmas.

I would go and see the private one and see what they say and how you feel about them, then it might be easier to make a decision.

xx

[Christin_a]

Hello

So unless you have suspected or confirmed stage 3 or 4 endo. You don't need to be treated at a BSGE centre, usually they only deal with these more severe cases.

Note your referral to the centre was it a choose and book your own hospital or was it specific to the bsge centre and the bsge gynaecologist. Because you could be seen at the same hospital as a bsge centre. But not be seen by the bsge team for example.

But saying that you still need to be seen by someone who has additional training in endometriosis, and has a specialist interest in (this is different to being a bsge gynaecologist). So the people you have an option to see through your work insurance. Check if any of them have this, unfortunately some do say they can deal with endo without meeting this criteria but it goes against the NICE guidelines.

[missaitch]

Thank you so much for your replies. It’s so helpful. Particularly about being seen outside of the actual ‘endo centre’ even though the referral is there. Can’t tell you how much this forum and the endo uk site helps.

I decided to meet with the consultant and see. I’ve been booked in tomorrow for the initial consultation (which surprised me how fast - lucky cancellation). I’ve checked them out and they do seem to be trained and to be treating endo across sites.

This whole thing feels a bit catch 22 in the diagnosis and treatment being wrapped into one so how do you know what stage of endo you have before actually having a laparoscopy.

Thanks again! And fingers crossed that they’ll be patient with me and my long list of questions.