I have Endo which was diagnosed with a laparoscopy back in May 2017. Since then my pain and symptoms have got so much worse than they’ve ever been.
Today I had an appointment with a gynaecologist at my local hospital to discuss my symptoms. Basically, I have to pee 30+ times during the day and at least 4+ times during the night, I’ve had 6 diagnosed UTIs and a few with the symptoms but no infection since last May (no UTIs prior to laparoscopy), blood in my urine during period, pain when I don’t go to pee immediately and more intense/more frequent Endo pains.
Today the gynaecologist told me that he believes there’s no connection to my Endo and the Endo can’t possibly have returned because they only find minimal Endo back in May.
He believes that I have just lost all control of my bladder at the age of 23 and I’ll have to go on strong medication to help me get control of my bladder again. He’s also said that I’m doing everything correctly (avoiding caffeine, alcohol, acidic and sugary things etc.) but now I should just stick to water and have nothing else and become tea total completely! He also told me that I’m drinking the right amount each day but I should reduce it significantly to stop the urgency to urinate even though doctors have told me to drink more to stop UTIs. His explanation for the sudden start of continuous UTIs is that I’m now unhygienic and have rougher sex. I’ve been in a long-term relationship with the same man for years and we haven’t changed how we have sex and I’m a hygienic person (but also not too hygienic), nothing has changed so that doesn’t explain why I get UTIs now.
I told him that I think the Endo has returned and its affecting my bladder and I’d like a cystoscopy but he doesn’t think it’s my Endo at all and that I’ve just lost control of my bladder and I have rougher sex now 😫.
I told him that I don’t agree with his diagnosis and I’d like a second opinion so I’m seeing another gynaecologist on the 23rd Jan.
What should I do? Can you demand to have a cystoscopy? Can I demand that they do more tests? Has anybody had anything like this before?
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BethanyAnn
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I can’t answer any of your questions but that is awful that they’ve told you that and basically blaming you for the cause of your problems!
I understand about the urgency of needing to urinate and weeing all the time! That’s all I feel like I do, I’ve yet to have my lap so I’m undiagnosed but I feel your pain!
Hi, that sounds horrible. I’m sure you’ve done the right thing in asking for a second opinion.
As patients we can’t insist on particular investigations or treatments, because it’s a professional decision (for which the professional is accountable). But we can refuse advice and ask to see a different doctor, just as you have done. I hope you find the next one more sympathetic.
Hi I’ve been going through very similar symptoms to you. This is still an on going thing for me.
As my GP found that I had blood in my urine I requested to be referred into a urologist.
My first consultation was part of what was called a one stop diagnosis clinic. (Not really one stop in my case) they performed a cystoscopy which showed I had inflammation of my bladder and open sores on the lining. The consultant referred me into another department for treatment and other tests.
I’ve been on a special diet which identified certain food triggers (my triggers include things like tomatoes, artificial sweeteners, caffeine etc) I’ve also been on tablets to reduce the amount of times I went to the toilet but these weren’t very good.
My consultants have mentioned a condition called interstitial cystitis (IC) which unfortunately can go hand in hand with endometriosis. They won’t currently make a proper diagnosis as they need to operate and take bladder biopsies, which will make the pain worse if it is IC. So currently they have labelled it as painful bladder syndrome. (PBS)
I’m on bladder instillations at the moment only done three so far so not really able to say if they are working.
I would push for an additional referral in the mean time but also mention PBS and IC to your Gynecologist.
To me it sounds like you've done absolutely the right thing getting a second opinion. I too pee like 30 times a day and frequently wake up at night to pee (it's why I'm awake now 😕). I've had frequent UTI's for the past 10 years and had a cystoscopy and a urethral dilation (where they stretch the urethra). The urologist found scarring inside my bladder but said it was very minor and nothing to worry about. I mentioned this to my gyne at my first consultation and he instantly said he wants to investigate this and do a cystoscopy at the same time as my lap. Any doctor with half a brain would investigate! You've had frequent UTIs - I thought there was a link with endo?
I don't think you can demand a cystoscopy but don't be afraid to ask and be persistent. You know your body better than anyone else. Good luck with your second consultation, I hope it goes well for you.
This is interesting, I've been seeing a gynae for ther last two years and they've been fobbing me off with 'it's just fibroids' while my symptoms have got progressively worse. 18 months ago i was really poorly with what turned out to be a severe kidney infection and I've had a further 4 since! I am absolutely convinced the kidney infections and gynae issues are linked but my GP and gynaecologist don't seem to be interested and are treating them seperately...i even had two ultrasound scans in the same week... one to look at kidney/ bladder issues and the other to look at gynae... crazy! I've also been told the UTI issues are hygiene/sex related and am in a long term relationship (and i can tell you... the frequency of sex has definitely decreased as the frequency of symptoms has increased!!)
Anyway, I'm finally having a laparoscopy on Wednesday but I'm concerned they're not going to investigate the bladder/ kidney link.
Hi I had my lap in August and also have my pain returning! My doc has now referred me to an endo consultant so we will see. I just wanted to say that I to suffer with needing to wee a lot and if I try to hold it, I end up in agony!! Hope your second appointment is better xx
You need a laprascopy. I do have bladder endo. And bowel. Deep infiltrating kind. But none have infiltrated through my organs but effect them terribly. That makes cystoscopies and colonoscopies clear. They aint clear, look from a laprascopy and you get to see the Endo on my organs and how they are effected. Go for a lap. X
Thank you for all your support and wonderful messages! It sounds like there’s a correlation between having Endometriosis and various bladder problems so I’m not sure why our doctors and gynaecologists aren’t seeing this correlation and investigating it.
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