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No diagnosis, but very scared and confused.

nutkin
Posts: 4
Joined: Mar 2018

In June 2015, after a bad pap, I had a LEEP procedure and diagnosed with CIN3/CIS. The lab report came back with clear margins and I was told I only need one follow-up pap and as long as that was normal, I would be ok.

 

Fast forward to June 2017, I began having similar symptoms to what I had before the bad pap.  I have spotting up to two weeks before my period begins. It ranges from a pinkish discharge to blood that kind of gushes out in the morning when I go to the bathroom. It is an odd purplish color. I also have watery discharge throughout most of my cycle. It has a weird smell to it. I wouldn't say it smells bad, but it doesn't smell good. I also have trouble holding my bladder. I have to pee all of the time (3-4 times at night) and at least once an hour during the day. If I don't go as soon as I feel the urge, it leaks. This is worse just after my period.

I also began having extremely heavy and painful periods. I have to change pads at least once per hour and I sleep on multiple towels at night so I don't ruin my bed. The pain is so excruciating that I cannot stand up straight and no OTC pain relievers help. I had two kids with no pain medication and that was nothing compared to this pain. It is worse than the kidney stone I had 10 years ago. It lasts for 3-4 days and then I have a fairly "normal" period for the duration of 5-7 days. I have menstrual cramping throughout my cycle.

 

I only just recently got insurance this past January. I made a GYN appt for 2/7 for a pap smear. I told them about my problems, so they did a vaginal u/s and scheduled my pap for 2/20. At my pap, I am told I have a fibroid and a very thick endometrium and they schedule me for a hysteroscopy, which was done on 2/28. The hysteroscopy was very painful (despite a shot of toradol and local anesthetic on my cervix). I could see on the screen that my uterus is filled with various tissues and my doctor told me that is what is causing my problem, but didn't say what exactly they were. I should have asked, but my woozy from the toradol.  He also did some biopsies during the procedure.

 

I go back on 3/14 for my results. I was told on 2/20 that if the fibroid wasn't too large, I would be able to have an ablation, but otherwise I am looking at a hysterectomy. They even had me sign the forms so they can get it approved with my insurance.

 

Everything I am reading, along with my CIN3/CIS history and symptoms sounds really bad. I just don't know what questions to ask of my doctor to get more information. Does it seem like they are doing things in the right order or are they jumping the gun with the hysterectomy talk?

nutkin
Posts: 4
Joined: Mar 2018

I also want to add that I just turned 35 last month.

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

whatever the results are do not let the drs try to use a morcerator to remove the fibroids.  If there are cancer cells inside the fibroids it will throw them inside the body and spread the cancer around. The medical board has said that they are not safe to use but I am not sure if they have completly banned them yet.

Sorry you are having to go through this so young but it sounds like you have caring drs that try and explain things to you.  Waiting is the hard part but do not get ahead of your self till you get the results from the pathology report.

Come back once you get the results and let us know. trish

pinky104
Posts: 574
Joined: Feb 2013

I have had uterine papillary serous carcinoma and had a watery discharge that smelled bad with that.  It had a smell that I would characterize as almost fishy smelling.  I also leaked urine before my cancer surgery, and that was because I had a cystocele.  The bladder was dropping and making me leak urine, mostly when I coughed or sneezed.  I went through having a pessary put in for that, which was painful.  Then I got a little infection and the doctor prescribed an estrogen cream for that.  A couple of weeks later, I developed bleeding, which turned out to be from cancer and not from the estrogen cream as I'd suspected when I read up on the estrogen cream.   A few other people on this site who have had cancer have also mentioned a discharge.

If I were in your shoes, I'd go for the hysterectomy to decrease the odds of having an undiscovered cancer and have it show up at a higher stage later.  Mine was already stage IVb, the highest stage, when it was found.  I'd had a polyp causing the bleeding.  The doctor assured me it was very likely to be a benign, but it wasn't. 

Having a negative pap doesn't mean you're safe.  Most uterine cancers do not get found from pap smears.  They only do if some cancer cells happen to migrate there.  A biopsy might or might not find a cancer, depending upon where the doctor samples. 

Good luck to you. 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi there,

From my personal experience, here is what I learned (in case this is helpful to you):

Do keep talking to the Drs, let them know your symptoms and concerns.  Be careful what you read on-line.  Everything sounds hopeless and scary on-line.  In my case, (undifferentiated small cell carcinoma of the uterus)  the studies were few and out of date with very, very poor prognoses.  I'm glad I didn't read about it online until AFTER treatment!

My very best to you!

Susan

janaes
Posts: 783
Joined: May 2016

O just wanted to welcome you to our group. No one wants to be here but it is a place of support, love, advice, and empathy. 

Im glad you found us as early as you did.  

Im not quite as young as you are but i just wanted to let you know you are not alone.  At age 20 i got a different cancer and then i got uterine cancer at age 43. I do understand how you feel being so young.  Its hard.  

I wish you well as you go forward finding out if you even have cancer. I hope it all turns out for you.

Janae

nutkin
Posts: 4
Joined: Mar 2018

Thank you all so much for taking the time to respond to me. I really don't have anyone to talk to. My mom knows, but she has her own health issues, and cries every time I speak to her. My husband is there for me, but doesn't really understand, and his mother is in the ICU right now so I am kind of alone.

 

When I had the LEEP and colposcopy in 2015, it came back high grade squamous intraepithileal lesions with glandular involvement. The majority of my cervix had abnormal cells. I just worry that since they didn't inspect further that it had possibly already spreador something or they didn't get it all.

 

I am fine with a hysterectomy. I have had my tubes tied for over 12 years, so that isn't an issue. I just want real answers and while I trust my doctor a lot, I know he isn't infallable. Would I be off-base asking for a hysterectomy if he doesn't suggest one?

 

Thank you all again, so much.  It means a lot that all of you took the time to respond. I will be back once I get my results on the 14th.

 

 

nutkin
Posts: 4
Joined: Mar 2018

My biopsy came back no cancer. But, I do have severe endometrial hyperplasia so he recommended a hysterectomy, which will be done in the next 10-14 days. I will keep one ovary. 

 

Thank you all so much for your advice.

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

So glad to hear you got a good biopsy report.   Hugs and prayers on your upcoming surgery.  Then go and have fun!!!

Kathy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Best news ever Nutkin! So happy for you. Now, go out and have a happy life. Make every day count.

Good luck with your surgery. You will do great....

Love and Hugs,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I'm so pleased for you. I feel so sad when new people join us. So glad you won't need to. 

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