Do it to me straight away; I hate treatment. Its scares you?

Real People Stories –Taylor

 Scary US referral

Hi all, I’m just looking for some HPV test validation/explanation/vent a little. For the CAa125 test background, I’ve felt like my current GYN is very wishy-washy and doesn’t seem to listen to my concerns at my appointments. I’ve been looking to get a new one but haven’t done it yet.

Recent Annual Exam

I went to my annual and had a Pap smear and pelvic CA125 exam done. I’ve been having some dull pelvic pain that radiates to my lower back and sharp pain with sex. And a little bit of bloating. I’ve also been dealing with increased spotting. But I take my birth control pill continuously, and she assured me that some spotting is to be expected. During the manual exam, I felt a lot of sharp pain around my cervix and right ovary.

This, coupled with my other CA125 symptoms and my pap coming back abnormal (HPV negative. But “atypical squamous cells of undetermined significance”), led her to give me a referral for a pelvic ultrasound. Based on our HPV visit, she didn’t recommend a repeat test for pap or colposcopy, so I felt very unconcerned and figured it might be a cyst or endometriosis. She instructed me to “try and get it done within 6 weeks” and mentioned that it could also be a digestive system issue.

Unexpected Referral Note

Fast forward to me getting home and looking at the referral; the clinical indications/reason for referral section read, “Very serious, potential for malignancy”. I almost collapsed. NOTHING about my visit would have given me the idea that she had cancer on her mind. I work in the medical field and understand that sometimes doctors need to exaggerate things on a referral for insurance coverage or to expedite care, but she should have mentioned this to me. Since then, I’ve been going down an internet rabbit hole, convincing myself of the worst. I’ve tried contacting her at the office multiple times, but she’s always unavailable.

I am scheduled for my ultrasound tomorrow, and I’m terrified. I’m furious that she put this on the referral without warning me and has left me in the dark to wallow and panic over it. If she was concerned about Ca125 tests, she didn’t make it apparent at all during my visit. And if she put it in there to have me seen sooner, I would have seriously appreciated a heads-up.

Suppose you’ve made it this far; thanks for listening! Please pray for me that everything goes well tomorrow.

Harry

I’m having surgery on Friday

Hello,

Around October, a condyloma (a wart) appeared on my pubis, and at that time, I didn’t know it was linked to HPV.  I left it hanging, and other symptoms appeared, such as pain when I urinate, a whitish discharge in the morning, etc…

First Doctor Visit

So I decided to see my CA125 doctor (forgetting to tell him about the famous wart), who gave me some tests, urine for HPV and blood, which did not suggest any infection or anything else. The symptoms persisted, and I eventually went to see a urologist (in November). He told me that it was probably an inflammation of the seminal glands or something like that (he gave me herbal bullshit capsules) and also prescribed a liquid to apply to the wart to make it disappear.

Initial Treatment and New Symptoms

I treated him for over a month, and the wart disappeared. The flow is still there but much weaker. Time passes, and I realise that lots of warts are appearing in different places, pubis, penis, balls… Panic. I’m making an appointment again with a urologist, different this time, I have to wait until April. I presented the symptoms to him (including a new one. Most of the time, my stream of urine splits into two: you will understand why), and I explained the failure of the previous HPV treatment after testing. He scheduled an appointment for a month later to check more in-depth and said that, depending on the number of warts, I might have to undergo an operation (I was in total stress).

I show up for the appointment, and there I am ambushed… And I didn’t quite understand, but it was for a cystoscopy (camera in the urethra into the bladder). I’m not telling you about my condition when he tells me he was going to do it to me straight away; I hate treatment; just a ca125 blood test scares me.

The Cystoscopy Experience

Probably the most beautiful nurse in the hospital. A little brunette with blue eyes, who comes to clean my glans, injects me with an anaesthetic via a syringe straight into the urethra. From that moment, I understood that I was going to squeeze.

So he puts the camera on me, goes into my bladder (the passage of the sphincter, damn, I screamed) and tells me that there are lots of deposits that it’s not normal and ends up removing the camera, and there, he does he come across? Fucking polyps at the entrance to the urethra. He tells me that he will have to remove them, under general anaesthesia, as well as all warts present on my penis. I have difficulty realising it. I ask him if it is cancerous, and he tells me it is surely linked to HPV. He explains it is likely a wart that has grown in the urethra, which is uncommon but generally benign.  It will be necessary to operate to check if it is a cancerous strain of HPV or not…

Upcoming Surgery

I learned this at the beginning of May. My CA125 operation will be carried out this Friday, the 14th, on a Ca125 outpatient basis. So I normally come out the same evening. They’re going to file my urethra with a resistor and cut HPV warts with an electric scalpel near the glans, on the balls… I’m going to have the right to a urinary catheter, too.

My best friend also had this HPV wart operation, but for polyps in his bladder, it traumatised him, causing the worst pain of his life, according to him…

I’m so stressed out about the CA125 anaesthesia (my first) because they’re going to hurt me.  And I’m especially dreading the post-operative pain.  No choice anyway; I will have to take my courage in both hands.

I’m looking for some evidence to reassure myself a little.

Thank you guys