First hospital apt Thursday

[Humptydumptyegg]

Hi all, seeking general advice and guidance as to what I should request/ask at my first hospital appointment on Thursday.

I’ve been referred to gynaecology due to pelvic pain and deep pain during sex. A vaginal US a couple of months ago showed nothing sinister but suspected adhesions due to ovaries not moving as they should. I have had no previous stomach ops, or PID (that I know of) and the increasing pain I’m experiencing makes my GP suspect Endo. A vaginal exam was all fine, swabs were taken which I presume were all normal as there has been no news otherwise.

My pain is getting worst, it’s pretty much constant now and I’m struggling. It’s worst straight after my period ends and continues to escalate all month until it becomes more bearable a day or so after I start my period for a few days then begins again. I’m not sure this is ‘typical’ Endo symptoms.

I’d like to know what to request/expect at my apt. Would an MRI be useful? My GP suggested they’d probably go straight to a LAP but I have a young family who are very reliant on me, and I wouldn’t want the LAP until I was certain the benefits outweigh the risks and that I could be sure of specialist treatment at the same time if it was required (multiple ops would be very difficult to manage), I’m also worried about a LAP creating further adhesions.

Any advice? There is an Endo specialist at my hospital but I believe proof of Endo is needed before I can be referred? Any guidance would be gratefully received. I’m struggling now and feel I need this apt to go well and make progress to keep me going.

[Hidden]

Hi!

I’m having an ultrasound first as like you I don’t want a Lap unless we’re 100% sure it is endo. My GP referred me for this, I'm not seeing a gyno yet.

You could ask for an ultrasound? x

[Humptydumptyegg in reply to Hidden]

Thank you for your reply. I’ve had an Ultrasound already. Just wondering if there was anything else I could do to ensure a LAP is worthwhile.

[Lindle in reply to Hidden]

Unfortunately ultrasound will not give a 100% confirmation of endo. It will show endometriomas (ovarian endo) and deep endo if it is done by an expert in gynaecological imaging but it won't show peritoneal endo, the most common form. When done by a general sonographer the most severe endo is often missed. It is very operator dependent. The NICE guideline is clear that negative scans (including MRI) don't rule out endo.

[Lindle]

You don't need proof to see an endo specialist. In fact it is a requirement of the NICE guideline that you are only seen by a gynaecologist with 'expertise in diagnosing and treating endo' if it is suspected, which means additional training in endo (1.1.3). So since your GP suspects endo they should be identifying a specialist in secondary care, ideally a sub-specialist in Reproductive Medicine.

The specialist centres that you might be referring to at your hospital (BSGE accredited centre) is tertiary care commissioned centrally by NHS England and not the CCG. In order to meet the referral for treatment there you would need evidence of suspected severe disease (stages 3/4/rectovaginal).

So:

1) You must only have a lap by someone with a minimum of specialist training in endo in secondary care.

2) If they should identify more than stages 1 and 2 (peritoneal endo and uncomplicated endometriomas) they mustn't touch you and should refer you on to the centre.

NICE:

nice.org.uk/guidance/ng73/r...

NHS England treatment spec and referral criteria for centres:

england.nhs.uk/commissionin...

The NHS England treatment spec refers to England only. If in the devolved boards the NICE guideline still requires that you are treated in a centre if severe disease is identified or suspected.

x

[Humptydumptyegg in reply to Lindle]

Thank you that’s really helpful. I’ve no idea who I will see Thursday, it’s general gynaecology I believe. I will see what happens and what they suggest. But it’s good to be armed with information!

[theorah in reply to Lindle]

Apologies for hijacking the conversation, but you seem to really understand the process and I had a question-

I've been referred by my GP to a endo specialist (so it said on the letter), apparently to do a 'deep scan'. Is this what would be considered a first step to getting a lap?

Also, my appointment isn't until July (I received the letter in September, so its a very long waiting time). I was told on the phone the waiting time is this long because they only get a specialist in twice a week (this is at a BSGE accredited center, I live 10 mins away). Is this acceptable/within any guidelines? Is there anything I can do in order to get an appointment or just a referral to a lap sooner?

[Hidden]

Hi a lap is the only way of knowing for sure and it’s something you will end up having anyway if they find it on an MRI. So probably just best to have it out the way. I had quite an intense one (it was more complicated than they thought so was preety invasive) 2 weeks ago and I’ve also got a young family but I was more or less back to my feet after a few days and I’m back to work full time now. So it’s not as bad as you think. You will find the tiredness worse than the pain xxx

[Humptydumptyegg in reply to Hidden]

Thank you for your reply. Did they treat you at the same time as they did the diagnostic LAP?

[Lost-sole in reply to Humptydumptyegg]

Sally369 is right a lap is only way to know for sure I had all the symptoms had a lap but no endo showed up but infected fluid in my tub had a second lap 3 years later mild endo found and removed I hate to say for me I have had no end of problems since been 17 now nearly 30 had a scan on my kidneys as suspected kidney stones only to find that it shows up scare tissue on my bladders and the tube up to the kidneys showing possible endo but it's prob right because it flares up around my lady time the same times as the usually endo pains I get it'd horrible having the diagnosis but it can also take time as it can hide best advice is don't give up and stay strong

[Hidden in reply to Humptydumptyegg]

That was the plan but mines a bit more complicated as for some reason my womb has folded in half 🤦‍♀️. I am now on zoladex injections as my endometriosis was worse than they thought as I’m stage 4. But they were planning to lasor it off so they may treat you there and then. I hope so xxx

[GemmaSands]

hey, when i went for my internal scan they didnt see anything, but i have endo on my ovaries. when i went for my laparoscopy in the hospital the doctor told me that if they found anything they might just lazer it off. when i have my follow up appointment I told the specialist this is what the doctor had said and he was like "no we wouldnt if it was only a diagnostic lap." he told me it was only mild anyway so could be treated with the pill.

so because of the amount of patients they have to see and the time it takes i think they wouldnt always treat you on the first lap anyway, I know it can be an inconvenience to have more than one opp especially with the recovery and having to look after the kids etc but i suppose atleast it should give you some answers?

[Lost-sole in reply to GemmaSands]

Very strange I had mine removed and it was mild it continues to grow so don't understand why they didn't remove it

[GemmaSands in reply to Lost-sole]

i know..he actually told me if i took the pill or had the coil that it would cure me. this is the same specialist that found it in my mum 28 years earlier, so i would have thought he would know what he was talking about. i left feeling confused and frustrated because i knew that wasnt the case, but atleast i know that im not going mad and there is a reason for my pain now. x

[Lost-sole in reply to GemmaSands]

I had it removed again on a following lap when there was even more I find that having the diagnosis is worse for me with in not going in my favour for jobs and been requested because of having endo and pcos aswell and 12 years later am not better of in pain all the time mood changes but I refuse to let it win

[theorah]

Thank you for your help and insight!