Should I ask for BSGE referral?

I have my follow up appointment with my gynaecologist on Tuesday. I had a lap in February where my left ovary and tube were removed, adhesions divided and left ureter stented. I was told my endo is 'extensive'.

I am fast losing confidence in the urology team at my local hospital following the removal of my ureteral stent I was given incorrect information about the next stage in my care. Basically if my left kidney function has not improved then they will remove said kidney, ureter and the endo that has blocked it. But then I was told I'll have to wait 3 months to have the kidney function checked!

I also want to know what they're going to do with the rest of the endo that is left behind. I am 4 months into a 6 month course of zoladex.

I want to know if I should be asking for a referral to a BSGE centre and if so is this likely to delay my care? Am I better off staying where I am to get treated promptly? Thanks.

[JeanOsborne]

Hi if you have extensive endo a general gynaecologist shouldn't be treating you . This is against nhs guidelines. You NEED to get a referral to a BSGE centre from you GP.

[Hidden in reply to JeanOsborne]

Will my gynaecologist be able to refer me? Is it likely to put back my care as I'll have to go onto another waiting list? Thanks.

[JeanOsborne in reply to Hidden]

Hi , your gynaecologist might refer you but normally I think it is your GP. It may well put back you treatment, but I think you have to decide whether you want to be treated by a general gynaecologist or one that is highly trained in endometriosis.

Unfortunately no one can make that decision for you. If it were me I would want the best possible care I could get.

Good luck with what ever you decide.

[Stellauk]

I have similar conditions. The general gynae referred me straight away on seeing my MRI scan report. You need specialist centre care. The kidney and ureter may able to be saved.

[Hidden in reply to Stellauk]

Hi and thanks! My kidney function was pretty poor at only 9% in January so the urology team have never been hopeful of its recovery but had to give it a chance. I'm just worried that if I ask for referral now it's going to delay things, it's already 4 months since my lap. I do want the best care of course and if the kidney is salvageable then that's great! I hear mixed opinions about the specialist centres, some are good and some not so good!! Is it just a postcode lottery?

[Stellauk in reply to Hidden]

It is difficult to know who is clinically best. As patients we generally rate doctors on their bedside manners but that does not equate clinical excellence. I also have nuclear medicine scan to monitor my kidney functions. However, it is difficult to keep on top on all theses doctors appointments. Have been to 5 hospitals so far.

Can I ask you experience re stent? I am due to have one for 3 month next week. A bit concerned re pain etc. Does your stent not able to stabilise your kidney for now ?

[Hidden in reply to Stellauk]

My left ureter was completely blocked by a stricture caused by the endo, described as a dense plaque by the gynae dr. I had a double j stent in the left side for 14 weeks which was put in during my lap. They wanted to take it out after 6 weeks but I refused as none of the ureteral endo was touched in my surgery. I didn't really feel the stent at all while it was in. I had symptoms of a UTI the week it was removed so it was probably good it came out.

I feel the endo in that area most days and worry every day that the ureter will block off. Of course I don't know if my kidney is functioning but will find out later this week as I have my renogram on Wednesday. I then see my urology dr next week to make a plan of what happens next.

Is your stent because of ureteral endo? I hear it's not very common.

[Stellauk in reply to Hidden]

Yes getting the stent for the same reason as yours. Fortunately my kidney is still functioning ok on last scan. Found out the endo by chance as they thought I had kidney stone in the beginning.

Glad to hear you have got on with your stent ok. I will have the stent and 1st lap next week. Then hormone injections for 3 months. After that another op to remove all the endo lesions. I think things are more coordinated with endo specialist as they are use to treat this .

[Hidden in reply to Stellauk]

I'm hoping to know what the plan is after my 3 appointments in the next week. I know that I want the endo out. It's just where it's done. My last zoladex will be July so I need a plan in place as I don't want the severe pain back 😔

It's funny how you say your endo was found by chance coz that was the same for me. It was thought I had a kidney stone and so was referred to the urologists. It was a bit of a shock to find out its endo and that's it's done so much damage already 😢

[Stellauk in reply to Hidden]

Hope your appointments go well. Have a list of questions ready in logical order so you can refer to them at the end of the appointment. Such as perop, what is the op going to involve, post op pain, complications , future treatments etc. It is best to take someone with you as I found it was difficult to take everything in.

[Hidden in reply to Stellauk]

Thanks so much that's really helpful. I have a friend coming with me today. Have a list of questions too! Will let you know how I get on. All the best with your surgery next week. 😀

[Stellauk in reply to Hidden]

Hormone treatment suppose to shrink and stabilise your endo. Are you having another lap at the end to remove all the lesions?

[Stellauk]

How was your appointment last week? My op went well. I did not feel the stent like you said.

Hope all is well.

[Hidden in reply to Stellauk]

Hello! Glad to hear your op went well!! What is the next step for you?

My appt with the gynae went okay but he won't refer me because apparently 'it's not cricket'!! I was referred to him secondary to my kidney problems. I have had my renogram and get the results Thursday at my urology appt. I will be demanding to be referred to the BSGE centre in Sheffield. I had my fifth zoladex injection today so depending on my kidney function now I want it sorting!!

Wishing you all the best for your recovery xx

[Stellauk]

How strange that your gynaecologist won't refer you. Thought he would like less work! I had prostap3 injection today. I need to have three separate consultations with gynaecologist, urologist, and colon surgeon. Then they will work together in 12 weeks time to have all the endometriosis tissues removed. Not a week gone by that I do not go to the hospital which is 2 hours trip each way.

Did they say much about your kidney? Any chance of preserving it?

Take care

[Hidden in reply to Stellauk]

Will know more about the kidney on Thursday when I see the urologist. The gynae does not want to see me again coz other than the ureter I haven't had any symptoms of my endometriosis. Another reason why I want reviewing in a BSGE centre. It's typical of a district general hospital where the consultants don't work together!! Very old fashioned😔

I've had so many appts lately, and am totally sick of needles!! Hopefully I will get my referral on Thursday and start to get some more answers to my questions!!

Hope you keep well over the next 12 weeks, keep in touch and take good care X

[Hidden in reply to Stellauk]

So had my urology appt today and not good news😔

My kidney function is only 14% which likely some residual function only.

Good news is that I am getting my referral to BSGE centre!! Hooray! Probably not much help for the kidney but hopefully will get answers to my many questions. Hope you are well x

[Stellauk]

Hope you getting your appointment soon at the centre. At long as the other kidney is functioning normally and not effected by endometriosis you can still lead a healthy normal life.

I have my second operation scheduled for mid September already, hopefully this is the end of my hospital runs.

Take care x