Newley diagnosed

[siren1]

hi all,

im new here, im 38 and have just been told 2 weeks ago after a cystoscopy as i was urinating a lot of blood that i have endometriosis in my bladder, i have always had painful heavy periods but just lived with it as no investigations were ever done, my gp is now referring to a gynae so don't know what stage its at ect she just said i have an unusual presentation of it as it isn't usually in the bladder, she said that there are several treatments and said about tricking my body into menopause any info /others experiences greatly appreciated

[endokicker1 Administrator]

Hi siren1 ,

Welcome to the community. I am so sorry you have been diagnosed with endo on your bladder. When endometriosis goes into other pelvic organs, it is called Deep Infiltrating Endometriosis. I am glad you have been referred to a gynea but please make sure you ask the right questions of your gynea. Don't be pushed to just go for medication or medical menopause straightaway. Make sure your gynea has experience and interest in dealing with endometriosis. If they are not, ask your GP that you want to be referred to a BSGE accredited endometriosis centre where they know a lot more about dealing with severe endometriosis. Please also write down all your questions and all your symptoms so you are ready to answer any questions asked.

I hope you find all the help you need.

[siren1 in reply to endokicker1]

hi endokicker1can you tell me what sort of questions i should be asking as the gynae i was referred to has left me feeling very dubious as basically stated he disagrees with urologists diagnosis stating i don't have urinary symptoms without even asking me and asked if they offered me treatment as they wouldn't do surgery on my bladder and pointed out i have had children i do not believe he is a specialist he has said he will do a lap in june and also clean my womb for my periods but not explained the procedures at all and tried to push me into having a coil fitted at the same time as the lap

[endokicker1 Administrator in reply to siren1]

oh my goodness! we see this over and over again, with doctors with no endometriosis experience forcing dubious treatments on patients without really understanding our specific circumstance. I don't know what the gynea means by cleaning out your womb for your periods. Endometriosis is usually diagnosed definitively by laparoscopic surgery. I am assuming this gynea wants to do a diagnostic lap and at the same time try to remove endo if possible, and then put you on the coil. But that is far from a clear treatment if he hasn't explained why he's choosing this option. However, if there is endo on your bladder, it would be very difficult for this doctor to do this on their own and usually they need a multidisciplinary team that would include endo specialists, urologists, maybe bowel specialists and so on.

If you had a chance to speak to the gynea again before any surgeries, a few questions I would ask are:

How many laparoscopies to diagnose and treat Endometriosis have you performed?

How do you know that there is no endo on my bladder considering that the urologist suspected endo?

I would like an Ultrasound scan/MRI to see if there is truly deep infiltrating endo on my bladder?

Have you ever done surgery on someone with bladder endometriosis?

What would happen if it turns out I have endo on my bladder? Will you work with a multidisciplinary team?

Apart from surgery, can you explain the other treatments like hormonal treatments or pelvic therapy?

If you see endometriosis, what method will you use to remove it? laser vaporisation (ablation) or excision surgery?

What are the risks of surgery? Will my fertility be affected?

What are the risks of the hormonal treatments if they are considered for me?

Will you provide me with a classification stage after surgery? (There are 4 stages)

Those are the kinds of questions I would ask.

I think you need to speak to your GP again honestly. I think you need to mention that you want to be referred to someone who you know has definitely dealt with endometriosis especially on the bladder (just in case this gynea is still not instilling confidence). If you go to bsge.org.uk/centre/, you can look for a centre near you and ask your GP that you would like to be referred there for further investigations.

I hope this is helpful.

[endokicker1 Administrator in reply to siren1]

oh also, I think you should google this gynea's name. The hospital usually has info about their interests, their specialties etc. that may give you an idea as well