Bladder pain and suspected endo

Hi, new here

Ive had chronic pelvic pain for 4 years. My main symptoms are urinary frequency, urgency, bladder pain and pain on urination and bowel movements sometimes. I also get randomly excrutiating periods which I know are not my normal level of period pain - I dont get them every month but when I do I feel like I am going to die and want to go to A&E.

I was referred after 3 years finally to urology after peeing in many a pot and convincing the gp's i did not have a UTI. They did a cystoscopy which found nothing. Also treated me for possible IC with bladder instillations which have not helped.

I am trying to get referred to gynaecology and I want to have a lap to find out if this is endo causing my pain. I did have the heavy bleeding /clots a few years ago but that has all stopped and been replaced with the bladder pain instead.

The GP said my referral was refused after he went to gynae for advice and guidance. He said only if I am trying to conceive and having fertility issues will they refer me???? BUT IM IN PAIN??? I am begging them to refer me - this is ruining my life. Cant wear a tampon cant have sex it hurts too much my life revolves around pain management. I get extremely fatigued with it too and sometimes random pains down into my legs and perineal area.

Am I going mad or do I keep pushing the GP for the laparoscopy (even though they make me feel mad) to diagnose or at the least rule out endo?

12 Replies

I would see a different gp and ask for a referral. The idea that you only deserve proper treatment if you can't get pregnant is frankly insulting. I'm actually quite angry on your behalf.

Where in the uk are you?

south west

Do I have any right to ask to be referred to the gynae of my choice? There is a BSGE provisional endo centre at the hospital where I am but whether the GP would refer me there I do not know. Getting tired of fighting to be helped.

This is the 2nd GP- Im just at a loss as to what Im supposed to do, why Im no being taken seriously. Makes me feel like I am the one being unreasonable. I keep going back and they keep trying to send me away with things to simply mask my symptoms, when I want investigations to get to the bottom of it

Lindle here has some very useful post on GP referral and guidelines. Have a look at them. You should push for a referral to the BSGE consultants to. If all fails maybe a private referral just to get the ball rolling. Once you diagnosed you can go back to NHS lis.

All the best

Anyone in the UK has a right to a lap if endo is 'suspected' so basically if anyone refuses you a referral they would have to be prepared to put in writing that you don't have it which no one would be prepared to do with such symptoms. The NICE guidelines that underpin treatment say that if endo is suspected you must be offered a referral for consideration of a lap if:

· The woman wishes for referral

· She has severe or longstanding symptoms

· She has concerns about future fertility

· Is having problems trying to conceive

· There are abnormalities found on clinical examination or pelvic ultrasound scan.

To say that you can only be referred if you are TTC is ludicrous and it does make us wonder what these gynaecologists are taught. As you are in England you have access to NHS Choices so can request referral to a gynaecologist of you choice to include one working in the centre. I have now set up my own Facebook support group with lots of info files and advice so if you want to join we can guide you through what you need to do. x

I just want to say thankyou so much. I have been reading some of your other posts and since joining this community last night when I have been at rock bottom I am getting my motivation and power to fight for this back. being informed is really important. I was worried that if I refuse the hormonal treatments they wont refer me, as I know my body and I know how the pill etc affects my moods is so unpleasant its not something I want to have to put myself through for another 3-6 months just to be "allowed" referral.

This makes me feel more prepared going back to my GP. I just have to keep fighting.

I ve that symptoms too. Check whether is pelvics congestion sydrome. But mine failed to diagnosed. Although been removed ovarian cyst. Sitting and standing feel the pain. Only lay down will get better

I feel for you.i was in agony for14 months!! Dics would not refer me.i changed surgeries& got a referral within 3 weeks!! Keep pushing or change doctors!!

Hi, I know this post is from a year ago, but I just wondered, if you see this, did you get a diagnosis? Because your symptoms sound so similar to mine. The bladder issue in particular is becoming very debilitating. I've just seen a gynaecologist who seems quite happy to refer me for a laproscopy, especially when I mentioned that my aunt had similar symptoms which were never diagnosed.

Hi there

I got diagnosed in March with endometriosis. I had to fight very hard for the lap but it was so worth it. The lap itself did not really help my symptoms even though they excised my endo. I have now had the mirena coil for 4 months and it has helped - I am extremely happy to have a diagnosis after years of confusion so my advice is fight for the lap as it’s the only way to either diagnose or rule out endo. Message me if you want to know more or chat about it xx

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