Can endo by seen on CT scan?

I had a clear CT scan of my bladder, kidneys and urinary tract. Was wondering if endo is picked up on this type of scan?

I have had IC suggested to me as a diagnosis however I don’t have urgency or frequency, just severe chronic pain in my bladder and urethra and sometimes up into my vagina which feels like a burning pain. I also sometimes feel like something is stuck up in my like an old tampon even though I don’t. This has been ongoing since 29th January 2021.

From joining this group I am now wondering have I endo on my bladder?

I am currently fitted with a mirena coil from May 2021 was previously on progesterone only pill which I stopped taking in Dec 2020.

The consultant is going to do a cystoscope with dilation and biopsy next.

[Char411]

Hey lovely,Only way to diagnose endometriosis is through a laparoscopic surgery. I have numerous scans, even an MRI and endo never showed up but I pushed for surgery and they found moderate endometriosis and spent three hours burning it off.

Please don’t let them fob you off with clear scans

Best of luck xx

[Hidden in reply to Char411]

Thanks for your reply. I have asked my GP if my cystoscope doesn’t find anything can I be referred back to gynae. So will ask for this to be done. I just want to find out what is causing me to be in such severe pain. I turned 40 in July and feel at times like I’m double that!

[Char411 in reply to Hidden]

Oh I know exactly how you feel. I’m 43 and feel 90. I was diagnosed through surgery in 2018 and the surgery really relived my symptoms but they have all started coming back the past few months so I’ve been referred back to gynae too. I’ll probably wait 2 years for the appointment and then surgery 😂 I waited 12 months last time and that was pre Covid.Stand your ground with them and remember no doctor no matter how specialist they are knows your body better than you. I am so pushy and firm with them now after they robbed me off for 18 months on my road to diagnosis, I had every test going including endoscopy and colonoscopy and all were clear and they wanted to give me the all clear smile and send me on my merry way but I demanded more as it was impacting my daily life. Sorry I’m ranting now but we do get dismissed as women with women’s problems.

Hopefully you get a diagnosis soon as it’s a relief to know it’s not in your head (even though we know it’s not, long before they do)

X

[Escapologygirl in reply to Char411]

I am exactly the same as you, diagnosed 2018 now 44yrs old and keep getting the all clear its all in your head smile. Its so frustrating and I've recently been let go from my job for being out sick so much with endometriosis. I am now like you standing my ground and not accepting their crap.

[Tillyfloss]

Hi. As char411 said you know your own body, follow your instinct. I knew something was wrong and it wasn’t just the cyst stuck to my womb and bowel. Ct and mri scans normal, I was seen by an excellent bsge consultant who was very relaxed about removing the cyst- turns out I actually had stage 4 deep infiltrated endometriosis, full frozen pelvis and bladder and bowel encased and he said I was a sharp reminder that even with his experience he can be caught out. He helped me and 6 years later I’m still keeping well. Have you tried the endo diet whilst you wait for appointments? Xx

[Hidden in reply to Tillyfloss]

Thanks for your reply. I initially tried the elimination diet for IC. Only thing seems to annoy me is tomatoes. Haven’t heard of an endo diet. I will look into this, thank you.

[Ronsk]

Hi there, I've had ct/mri over the years and my endo can be seen. It was only recently I had an mri through another consultant specialising in something other than gynae .he told my gynae consultant that my endo can be seen .

[Cockapoo-2016]

Hey. I am all new this, back in September 2021 I got up feeling fine, after a few hours I started to get a severe lower abdominal pain and plevis left side. I tried a hot water bottle and pill killers nothing worked the pain just got worse as time went by. My partner called for ambulance service the operator refused to send me an ambulance bc I had to wait 4 hours for one, as I wasn't a priority and the operator told my partner to wait 4 hours or he could take me to A and E. I can't move off the floor the pain wouldn't let me try and get up, so my partner tried again to call for an ambulance same responses. So my partner called a couple of neighbours and tried to get me in the car.

I arrived in A and E got told do a urine test last thing you what to do when you are in pain. I got called in by the A and E doctor he asked me questions I answered them, that I had vomited and had a severe pain, the A and E doctor wasn't sure if it was kidney stones or gallbladder stones.

So got referred for a CT scan, the CT scan came back that I had a Cyst what type they didn't know. I got referred to a gynecologist urgently for the next day, the A and E doctor told me I would get a call the next day to come in for a urgent ultrasound, three days later the hospital didn't call. So I had to chase the hospital up, I got told that I got mixed up with another patient details, so in the end got a urgent appointment for my ultrasound. Once I had my ultrasound they told me to go to another dept called urgent care to get my results from a on call gynecologist. After waiting around for four hours I got called in to have more blood tests at this point I lost count how many blood test I had.

I got my ultrasound test results I was told that the cyst had twisted and it could be endo but they where not sure. So basically I got left with unanswered questions, I was scared that this could happen again. So the next day I made a complaint to PALS and on that same day out of the blue I got a phone call from the gynecologist and she told me to come in a week. Attended my appointment and she told me that it was a 8cm cyst sitting on my left ovary and plevis. But the gynecologist couldn't tell if it was endo or mucinous cyst on my ovary. I had more blood tests bc my ca125 where sky high I got an appointment for urgent surgery with in a week. In October 21st I was suppose to have my surgery after 5 hours in day surgery waiting for my surgery to be done it got cancelled. The next day I chased the hospital asking when I would get another appointment for my surgery, I was on their backs every day so finally I got my surgery date. My surgery was booked for November the 1st, I had laparscorpy surgery, it was diagnosed then that my cyst was endometrioma that was attached to my left ovary, plevis and rectum.

I also had a MRI scan two weeks after surgery the MRI will pick up if endometriosis has wide spread or diagnosis.

MRI scan pick it up more then a CT scan.

So in a nut shell what I experienced is you have to fight very hard to get diagnosed and surgery, don't suffer in slience.

I am tied of doctors misdiagnosis women who have endometriosis, more training and research needs to been put in place too many women are brushed off.

I wish you all the best and please fight, don't suffer in pain, the longer you leave it the worse it will get.

🦋💜

[Hidden in reply to Cockapoo-2016]

Shocking but not unbelievable. The first time I went to A&E with severe pain they did urine and blood tests which were clear. I had severe burning deep up inside me along with severe urethral and bladder pain. The DR told me I might have an STI and to go to my GP for tests. I asked how would I have that when I’m in a long term relationship? He asked could there have been unfaithfulness ????! Talk about gaslighting. I was so upset. Needless to say I have never went back to A&E even when the pain has me lying on the ground.

[Cockapoo-2016]

I am completely disgusted but not shocked with A and E doctor not doing further tests on you and the way you where treated by your GP not very professional and lazy by not helping you to get to the bottom of your problem. I am shamed and so 🤬 with the NHS. Stay strong and please keep fighting the NHS, even if at times you feel giving up. We are all in this together ❤.