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What to expect

Joditd
Posts: 17
Joined: Feb 2018

Hello,

i have not been diagnosed with cancer. I am having a saline ultrasound and biopsy on the 13th. I would like to know what to expect, and is this the appropriate testor should I be requesting anything further.  I have been having a couple of strange symptoms for months that I haven’t told my doctor yet. I plan on telling him when I go on the 13th. My history... I had spotting a couple of months ago mid cycle which I had never had before. I called my doctor and left a message with the nurse but never heard back. I figured I would just ask at my next yearly exam or call again if it happened again. Then last month I started my period on the 12th, and on the 6th day, I was at work (I’m a nurse) and I was having to RUN to the bathroom every 30-45 minutes, as I was bleeding through a tampon and two pads.  I was also passing a large amount of large clots. This lasted a few hours and then slowed to my normal heavy. The next day it happened again, so I called my doctor and they had me come in for an ultrasound. The US tech asked me three times if  I was passing clots to which I answered yes each time. She wouldn’t give me any info. After the US the PA said it looked like a polyp and my endometrial lining was very thick (she didn’t give me a number) and my doctor would likely want me to follow up with a saline ultrasound and biopsy.  I don’t know if the spotting is related (but I figure it probably is). i Didn’t mention it. The two other things I didn’t mention are that for months now I’ve had tons of watery discharge. It’s bad enough that I haven’t felt comfortable being intimate with my husband because I always feel gross. I thought it was due to my weighg because I’ve gained a lot of weight in the last year. The other thing I’ve been dealing with is having trouble peeing. It doesn’t hurt. It’s not like HTI symptoms. I just start to pee, it stops and then I have to concentrate to finish peeing. It’s like my bladder doesn’t want to work. I thought that maybe I was just experiencing symptoms of a prolapse possibly since I have five children. Have any of you experienced these things? Do I mention them before he does the saline ultrasound? After? Should I not be worried about them?  I honestly don’t feel good. I’m always tired. But I also work a hard job. When I’m done with work, I’m pretty much spent. Every single one of my symptoms I have brushed off thinking most everything is done to my gaining weight This last year, and maybe it is. Any insights or advice is greatly appreciated.  I am still bleeding by the way.  It finally slowed down yesterday some but up until yesterday I had to make trips to the bathroom every hour or sometimes could go up to two hours. They started me on the pill (microgestin) but it hasn’t helped yet. 

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

was a watery discharge with a distinctive odor. Do mention it. My gyn didn't think it significant but luckily she went ahead and did a Pap smear a couple months early and some atypical cells showed up  

Good luck. Waiting for the diagnostic workup and results is so hard. 

Joditd
Posts: 17
Joined: Feb 2018

Was it like a weird Smell.... like not sweet and not sweaty but almost a mixture? 

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

how to describe it, especially since it was 6 years ago. It wasn't foul but weird Is a good word. When I first noticed it, I immediately remembered a patient with endometrial cancer I had cared for many years ago.  I couldn't say if it was the same odor but my primal brain must have known. 

pinky104
Posts: 574
Joined: Feb 2013

The interruption of the urination sounds just like what I have--a cystocele.  I had a pessary put in but found it much too painful to have taken out and cleaned every 3 months (I never had kids--it might be different with you or with different shapes of pessaries).  Before my cancer surgery, I was coughing or sneezing and then wetting my pants a little.  I went back to the pessary after cancer surgery, put up with it for a few months, and then decided the pain just wasn't worth it.  I no longer have the leakage problem.  At one point, before my surgery, I started getting some irritation from the pessary, and the doctor prescibed Trimo-San cream, which has estrogen in it.  A couple of weeks later, I started bleeding.  I checked out a website I used at work and found that the cream could cause bleeding.  I passed it off as that.  I didn't want to have to go back and get another painful pessary change.  When I went back again in three months, I mentioned it then.  That was how my cancer was found.  The doctor said the dose of the cream I was on wasn't a high enough amount of estrogen to be causing the problem.  He had a tech. do an ultrasound on me.  She saw something and went and got him.  Then I had a transvaginal ultrasound and the doctor identified a big polyp.  He said it would most likely be benign.  I'd had one ten years before that was.  This one wasn't.  I turned out to have stage IVb UPSC.  I also had a watery discharge.  I kept using Monistat thinking it was a yeast infection.  It would get better and worse again.  It actually had a bad, kind of fishy smell.  The doctor never seemed to notice it at my pessary changes, so I thought it was just my imagination.

I had heavy periods all my life, but they were worse in later years.  I passed a lot of clots and felt silly running to the bathroom at work so frequently (every hour on my worst days).  I wore both a tampax and a pad in case I leaked. 

As far as the urinary retention goes, I try to sit on the john for a while so I get as much urine as possible out.  I used to work with a woman who had previously worked in a urologist's office.  She told me that keeping urine in the bladder too long just collected more bacteria.  I've found a trick over the years.  I find that if I touch or tickle myself on my tailbone when trying to urinate, more urine comes out.  Sometimes I have to do it mulriple times to get it all out.  I assume I'm stimulating some nerves related to relaxing the bladder.  Try it and see if it works for you.

pinky104
Posts: 574
Joined: Feb 2013

Most people lose weight with cancer, but I didn't.  My cancer was so extensive that I think the weight gain I had was from the cancer.  They described the cancer in my omentum as being in a cake-like formation. 

Joditd
Posts: 17
Joined: Feb 2018

Thank you for the responses. I really appreciate it! 

saltycandy13
Posts: 167
Joined: Dec 2017

Please ask questions about the saline biopsy.  That is not the true way to diagnosis this cancer.  My oncologist thinks a D/C would be better.

On a personal note, I had mucus flowing with blood.  Sorry for the TMI, but I KNEW something was wrong.  It was a good indicator that it was cancer.  

He explained that during a biopsy of the uterus, they can't possibly get the whole thing and it is possible to show a thickened endometrium with polpys or fibroids and then have cancer brewing somewhere else.

I had pre cancer in one spot and actual cancer in the other.  When my original gyno biopsied my lining, she just took it from the wrong section.  If she had gotten the bad part, I would have been diagnosed with Adenocarcinoma grade 1, right on the spot.  Instead it took a total hysterectomy to find out.

Other thing: saline biopsy for me just didn't work.  Too painful because my cervix was closed.  They said it was because I never had children.  Personally I don't trust the biopsy process, but if given the choice for accuracy, I think it should be done during a D/C.  This is just my opinion based on what happened to me.

Good luck!

Karen

Joditd
Posts: 17
Joined: Feb 2018

Was the mucous blood colored? I appreciate your reply. They never mentioned a D&C but I can ask him. If not, I’m requesting a hysterectomy anyway. I know mybrisk of prolapse is greater, but I don’t want these periods anymore. 

saltycandy13
Posts: 167
Joined: Dec 2017

the mucus had bloody streaks in it and there was so much, I messed myself at the gym.  Went running off the treadmill to the ladies room.  It also happened at home where I ruined a pair of jeans.  I never had this happen before so I knew something in my heart was not right.

The D/C is more drastic.  But you have to go for surgery for that.  It's a quick surgery.  Takes less than one hour.  I know because I had 3 of them until they found my cancer!  The saline to me is just by looking at the ultrasound and targeting a spot.  Which spot?  Is it the right one?  The accuracy of a D/C biopsy (because the uterine lined is scraped is more accurate) about 90 percent.  At least they came up with Pre cancer.  Little did I know, it was already cancer stage 1 brewing in the background.

Hopefully all you have are some fibroids or polyps.   Then you can put this behind you.

Best of luck!

Karen

Joditd
Posts: 17
Joined: Feb 2018

Thank you for all your suggestions and help. Trust me I am going to ask.  I go back and forth with one minute telling myself it will all be ok and the next imagining the worst. Thank you all for being kind and helpful! 

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Even if it is polyps, I had a D&C done in 2004 and they found polyps and everything was ok.  Then in 2011 I was bleeding after menapuase and antoher D&C and had a tumor and more poylps which lead to a total abdominal hystorecomy.  Had I know know what I would go through in 2011 in 2004 I would have done the hystorecomy in 2004 an dpulled everythign out then.  But who is to say that I would not have had another type of cancer.   Good Luck and keep us in the loop. trish

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

tell your doctor EVERYTHING...

I was having the heavy mid-cycle bleeding like you describe---the clots and so much blood...I bled in the hallway at the school I work at (thank goodness the kids were in class)...literally a trail of blood...

I gained weight and no one could figure out why. I exercise 5-7 days a week doing spin class and yoga and burning more calories than I took in but I continued to gain weight and my primary care doc and endocrinologist could find no explanation (both thought it might be thyroid)

changes in bowel and bladder habits can indicate disease so please tell your doctor...I did not have those symptoms but my friend with ovarian cancer did...

there is an excellent chance it will all be ok but leave no stone undturned and give your doctor as much information as you can so he/she can rule out any cancer...

I have stage4b UPSC...after hysterectomy, chemo, and radiation it looks good for me...my last PET scan was very good and my radiology oncologist was beaming with happiness when he showed it to me...

there is hope!

but first you have to know what you are dealing with...

good luck!!!!

Joditd
Posts: 17
Joined: Feb 2018

I will definitely tell him.  I had thought about calling, but it's so hard to get in touch with anyone via phone, and I didn't think two weeks would make a huge difference so figured I would just wait.  It wasn't until I started googling that I even realized they could actually be related.  

I am so glad your scan was good!  You are a warrior, and you ladies will have made a difference in my life regardless of my results, just for being a sounding board and experienced advice.  Thank you all.

saltycandy13
Posts: 167
Joined: Dec 2017

you are welcome.  You couldn't find a better bunch of women on here to be of help and knowledge.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2609
Joined: Mar 2013

Push for testing and answers.  A D&C has been a good diagnosis tool for all of us.  Take a breath and see what the test results say.  Also, if you called the doctors office and no one called you back?  That is completely unacceptable.  I went off on my radiologist about the staff.  The one nurse was so rude - maybe she was having a bad day - she shouldn't be the one calling back patients then! 

Joditd
Posts: 17
Joined: Feb 2018

I called a few months ago when I had mid cycle spotting, because I had never had it before so I wanted to see if it was ok to wait for my yearly check up or if I needed to be seen sooner. The nurse called me and said she would check with the doctor and call back.  I never heard from them, but just let it go.  It had only last a day or two, so I brushed it off and figured I would just bring it up at my yearly.  Then, I started with the ridiculously heavy bleeding with clots (currently day 25 of bleeding - still with some clots, although not as bad).  I did some research when I left the doctor's office after my US, which is when I saw that spotting could be a concern, as well as watery discharge and difficulty urinating.  I didn't call them to ask about those symptoms.  I figure it will be hard to get that across via the telephone, and my work is pretty tough right now.  I am the only nurse in the clinic I work at currently, so getting time off is tough.  I just decided to wait and discuss it with him when I go in.  It is frustrating when they don't call back - even more so, because that is part of my job, I am busy, and I still call people back pretty quickly.  

 

Woulld you do a D&C before just opting for a hysterectomy?  Part of me just would like to go straight for the hysterectomy.  

MugsBugs
Posts: 110
Joined: Jan 2018

Joditd - have the D&C first.  It your doctor doesn’t insist on a D&C I would look for another doctor.  The D&C lets the doctor know what they are dealing with. This also helps them dtermine the type of hysterectomy (if it is actually cancer), laparoscopy or full abdominal Hysterectomy.  In my case it was classified as stage 1 and I had laparoscopy.  if it had been a different stage or more aggressive cancer he would have opted for abdominal surgery.  You want to get as many tests as needed to give your doctor as much information as possible.  I know it is a pain going through all these tests but they help insure the best output.

Joditd
Posts: 17
Joined: Feb 2018

Ok that makes sense! you have no idea how much you all are helping me! It’s so overwhelming, and I don’t know much of anything yet, 

MugsBugs
Posts: 110
Joined: Jan 2018

joditd - it is hard to know what the best advice is.  I was diagnosed on January 2 (the one year in my entire life I didn’t eat pork and sauerkraut for good luck on January 1st and see what happens - cancer diagnosis|-).  

Another piece of advice - if the hospital tells you a significant other can spend the night after your hysterectomy take them up on it.

Joditd
Posts: 17
Joined: Feb 2018

Oh no! I’ve never eaten pork or sauerkraut on New Years! I try and remember to eat the black eyes peas, which I did this year!  I will make my hubby or best friend stay with me, if I have it. I had a tubal Ligation After my third child, which failed 7 years later. After a miscarriage, an emergency surgery for ruptured Fallopian tube after it failed a second time, I then had a reversal surgery done. Then I had two c/s with my last two. I remember how uncomfortable I was after the C/S, and I imagine it’s similar.  I hope it isn’t worse!  

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

I was post-menopausal for a couple years and suffered from vaginal dryness. I started taking DHEA along with hormone replacement therapy (hrt), after I read it helped with this issue. About three months after I started taking it, I began having a discharge.  It started out minimal, but very watery.  Initially, I was elated, thinking the supplements were working.  However, as the weeks went by, it began increasing in volume.  I began filling two panti-liners a day.  It did not have an odor.  As it increased, I believed I was having incontinence. Yet, there was no color or odor.  It then began having tinges of pink/blood in it.  About a month later, I began spotting straight blood, then as the weeks & months passed, it became very heavy like yours. 

 

In between this time, I had a vaginal ultra-sound and was told it was a polyp, to go on my vacation out of country and enjoy myself, as they are common. Upon my return, it took me another three weeks to get an appointment to have the “Polyp” removed.  By this time, I had the heavy clots, non-stop.  I warned her of my female parts being very messy and angry. She assured me it was an easy surgery.  I awoke to her having a very concerned look on her face and saying, “I couldn’t get it all. You started hemorrhaging.  I sent tissue to the lab for testing. We’ll call you if it’s anything to be concerned with.  Otherwise, we’ll see you at your post-op appointment.”  Well, 5 days later, I got “The Call.”  Because the biopsy came back with Grade 3 Endometrial adenocarcinoma with focal squamous differentiation, my gynecologist felt horrible and made a phone call so I could be seen quick. Otherwise, the oncologists in our area would not have been able to see me for another 8 weeks.  I had a robotic hysterectomy seven days after the finding. 

 

So, the symptom of a heavy flow of a watery discharge is definitely something to be concerned with.  I warn all my friends, that this was one of my first symptoms and not to ignore it.  You have found a great site with wonderful, kind, caring, loving, committed women who are very wise and have tons of information and varying experiences to share.  Keep us posted on your findings.  Hoping for a favorable outcome and that it is just a simply polyp.

 

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

In between the bouts of bleeding, did you still have the clear watery discharge? Or was  your bleeding continuous? I ask because I have a clear watery discharge, but I have had sporadic bleeding for years before getting that. I just had the tv u/s a couple weeks ago, so have not got a diagnosis. 

Joditd
Posts: 17
Joined: Feb 2018

This last time, I bled for 27 days straight, which was mostly days of heavy flow.  I had probably 5 or 6 days of "normal" flow.  So, I didn't notice any watery d/c during this time.  The strange thing is I haven't had any d/c since the bleeding finally stopped.  I go for the saline US and biopsy Tuesday.  I am hoping I get a little more information then. I know the biopsy takes some time, but I am at least hoping for SOME information.  I also looked up gyn/oncol but then realized I was probably being ridiculous, since I know nothing yet.  I think I just got scared that my regular gyn is not going to be proactive enough.  

Joditd
Posts: 17
Joined: Feb 2018

Update for me. The polyp they said they saw during the last US was not there today.  There was nothing in my uterus.  The lining was still think but not “too” thick. So he thinks it’s all hormonal. He said he doesn’t think I’m ovulating. He said the cells look ”pristine” so I have no bacteria or yeast and the biopsy results should come back by Monday but he doesnt think cancer.  He said he wants me to take progesterone for half of the month every month.  And that’s it. I asked if I could have a D&C and he said I didn’t need one. I told him I didn’t want to take progesterone forever, and he said an ablation wouldn’t work for me because I’ve had kids and he can’t justify a hysterectomy so that is my only option. He drew blood to check my estrogen level which he feels will come back really high. 

Joditd
Posts: 17
Joined: Feb 2018

On the way home, something dawned on me.  He came into the US room saying "I think you're issue is that you aren't ovulating.  You just have too much estrogen because you're not ovulating."  I didn't question it, because it threw me off guard.  I didn't expect to hear that, because I have a period every month.  In my mind, I was just thinking  "where did that come from?"  On the way home, it dawned on me where it came from.  When I saw the PA last month, I gave her the monthly cycle card they give you to fill out for the year documenting all of your menstrual cycles.  I told her I completely forgot to mark the days I had a period in November and December but had one each month.  He had that in my chart and was looking at it at the end of the visit, telling me I just needed progesterone since I wasn't ovulating.  Now I just want to cry, because I don't think he even did an exam based on anything other than him thinking I didn't ovulate and have a period those two months.  I didn't realize that he probably got that from my little cycle chart until I was almost home.  I guess it doesn't matter at this point.  I can't go back in time and stop him to explain now.  I guess I should just wait for my biopsy results and blood work checking my estrogen levels and go from there.  Maybe he is right anyway.  I am so sorry to bother you girls with this.  I know your situations are much worse.  I should be thankful that he didn't think it was cancer.  I am just scared I didn't get a good exam, and I am dreading having periods like that again. I really appreciate all the feedback I have received here, and please know that each of you are in my thoughts and prayers.  

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

If you are not comfortable with how he is handling it, don't hesitate to seek out a second opinion, if that is an option for you (ie. insurance coverage). Better to be safe than sorry. 

 

Interesting that he said an ablation is not an option because you've had kids. I've never heard that before.

 

I do hope he is right and  you do not have cancer. Don't feel you are wasting anyone's time here. The gals are super great, I have not gone through all the testing yet - next step is D&C and biopsy, I'm thinking but will find out for sure tomorrow. The ladies have been super supportive, even when I've been a butthead.

Joditd
Posts: 17
Joined: Feb 2018

Thank you! Just waiting for results and will then likely seek out a second opinion. I would have liked the D&C that he refused. 

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