23 year old, english female needs advice please

5 years 6 months ago #50080 by charliemr04
Hi guys, I'm completely new. Bit of background history before my questions.
I am a 23 year old female. I suffer with PoTs, EDS and i am a haemophilia carrier. I have had bloating that doesn't improve for the past few months, i struggle to eat and drink and i am always needing to wee even though i can't. Sex can be painful and i get the worst stomach cramps going, they have me crying and wanting to go to hospital, My periods are irregular and tend to last a day and I look pregnant. Close family and friends have also commented and asked me if i am.

The Dr's referred me for a ultrasound to see if it would show something in my ovaries but instead this has showed two poyps in my bladder i cant remember the size but they were big enough for me to notice straight away when i was having my ultrasound done, i saw both.
My dr didn't seem concerned and has left it like that, no referrals, no tests. She said it wont be that causing my issues and suggested ibs which i have been trying tablets for anyway. Said there was no shadowing on it so it's fine and my recent blood tests are okay. Also i have no blood in urine.

But I'm wondering if I should have been referred or something done. Surely they shouldn't be leaving two growths in my bladder without any investigation? I have never had bladder cancer but just wanted advice of people who have been through this. My only option really is to change dr or pay for a private dr for advice. Cancer is very common in my family and has always been a big fear of mine, my understanding is that most polyps are not cancer and shouldn't be an issue. Even if it isn't cancer shouldn't i be having them removed?

Thank you for reading this, any advice or input would be appreciated, as much as i am concerned it seems like even in the worst case scenario the outlooks for this kind of cancer look a bit more positive than most.

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5 years 6 months ago #50082 by CatherineH
Replied by CatherineH on topic 23 year old, english female needs advice please
Hello Charlie... Welcome to our forum. Reading your post just makes me mad that a doctor would be so dismissive of growths in your bladder.

While an issue with your bladder may not address all the symptoms you are having, you most certainly need to be checked by a urologist. Growths in the bladder may not be bladder cancer, but unfortunately it could be and the sooner you can have that verified, the better. As you must have seen on this site, bladder cancer is very treatable, especially when caught early.

You need to push back on your doctor for a referral. If she is still uninterested, you need to change doctors asap. My gyno found my tumor on an ultrasound while checking me for other symptoms and immediately had her assistant call a urologist for an appointment before she let me leave the office. I credit her with saving my life.

I'm sorry you are having so many uncomfortable issues at your age. Please be persistent and get that appointment. Let us know how things go.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 6 months ago #50083 by charliemr04
Replied by charliemr04 on topic 23 year old, english female needs advice please
Thank you for taking the time to message me.
I think i was so worried it was cancer in my ovaries when i saw them on my scan that to be honest this was a slight blessing as bad as that sounds.
Reading all the stories makes me feel so much better, you have all been through such hard journey's but are here to tell the tale.

I guess the thing i am looking for is i shouldn't just leave them?
It doesn't seem right to me just to ignore it no matter how happy my doctor is to do so.
With the cramping and urinating it makes me wonder if they need to be removed what ever they turn out to be, i am really hoping age is on my side with this one.
What ever it is i am sure i will get through it.

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5 years 6 months ago #50085 by CatherineH
Replied by CatherineH on topic 23 year old, english female needs advice please
I can certainly understand your relief at being told it wasn't ovarian cancer. But to answer you question... No, those growths should most definitely NOT be left in your bladder. They very likely are small tumors, which can be benign, but can also be the beginning of bladder cancer. Either way, you need to know because a healthy bladder should be free of any visible growths.

Aside from seeing the bladder tumor on my vaginal ultrasound and sending me to the urologist, my gyno knew very little about bladder cancer in general. After her experience with me, she now approaches her patients differently in how she looks at their test results.

I hope you can get to a urologist soon, as well as get to the bottom of your other symptoms.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 5 months ago #50426 by charliemr04
Replied by charliemr04 on topic 23 year old, english female needs advice please
Just an update
Well the hospital have rang me, the urologist has seen my scan and doesn't want me in for an appointment. Instead I'm booked in for surgery next Thursday. No pre operation appointment, I haven't seen any Dr's yet and I have no idea about the risks or the operation or their plan. Seen as it's fast track surgery I'm assuming they are pretty worried :( :( biggest fear is pain peeing after.

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5 years 5 months ago #50428 by sara.anne
Replied by sara.anne on topic 23 year old, english female needs advice please
It is great that you are being evaluated by a urologist! The surgery that they have scheduled you for is probably what in the US is called a TURB....transurethral resection of the bladder. It is usually an outpatient procedure, although occasionally a patient needs to stay overnight. Under general anesthesia, the urologist will examine the bladder with a very small camera and take samples of the bladder (which is why the general anesthesia) to be sent to pathology lab. The pathologist will examine the tissue microscopically and his report will tell you and the urologist a. whether it is malignant b. if it is, the grade...high grade (fast growing) or low grade and c. if the tumor is still confined to the bladder lining or has extended into the lower layers or the muscle. It sometimes takes a week or so for this report to come back.

We will hope that there is no malignancy, but it REALLY needed to be checked out.

Good luck

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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