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I don't know if I'm allowed to post, waiting for biopsy and scared

Julieotte5
Posts: 8
Joined: Apr 2017

a little info: my name is Julie and I'm almost 40 years old. 3 beautiful daughters, all cesarean, happily newlywed in October 2016.

in May of 2015, I went to my gyn for standard pap/pelvic. Came back abnormal so I underwent a colposcopy and biopsy of the cervix after finding atypical glandular cells.  Got phone call a few days later that I was "fine".

 

july 2016 another abnormal pap but no further tests were run. I was told not to skip my next pap and started on depo prevara shot. 

Ive had roughly 2-3 years, worsening as time goes on, pelvis pain, front and back. And when I say pain I mean excruciating to the point that I can hardly walk. Hurts to pee, and poop. Sex hurts. Before the shot I just bled all the time. Weeks and weeks on end. Now on the shot I have several episodes per month where I bleed for a few days then it stops for a few days then I bleed again and the cycle goes on.

 

i was trying to wait until July for my annual but decided I had had enough because my husband was screaming at me because of my pain--it was inconveniencing him. So I went in April 10 and my dr decided it was time for surgical relief. He's doing an ultra sound and endometrial biopsy on April 24 to help determine if I need an ablation or hysterectomy however my gut says there's more going oN. I've had to stop all sex because it hurts too much. 

These last 6 months have been debilitating. I've gained so much weight I look 6 months pregnant. My cramping is in my groun, spreads to my legs. I'm sure I'm worrying about nothing but then again maybe I'm not. My mom is a stage 3 colorectal cancer survivor. I'm scared and I just need people who get it. Does that make sense?

Tethys41's picture
Tethys41
Posts: 1340
Joined: Sep 2010

Sorry, Julie.  This sounds frustrating and scary.  I am from the ovarian cancer board, and I can tell you, from that perspective, it is very typical for someone with gynecological cancer to be consistantly misdiagnosed.  I hope you have a doctor, who is willing to do some diagnostic procedures on your behalf, before forging ahead with whatever he is planning.  If cancer is present, and I hope it is not, you want a gynecological oncologist to do your surgery, not a gynecologist because they don't have the proper training to handle it.  With your symptoms, I think I would want a better idea about what is going on before he proceeds with his procedure.  I had an endometrial biopsy that came back negative but was diagnosed with ovarian cancer a month and a half later.  I do agree that an ultrasound is a good idea.  Hopefully it will include a vaginal ultrasound.  But if that comes back clear, I would ask for a follow up CT scan.  You can also have a blood test done, called a CA-125, which is a tumor marker used for some gynecological cancers.  It can give false positive results, especially if you have inflammation in your pelvis, but it is a good place to start.  Hopefully, it will come back negative.  Something else you can try, for your own peace of mind in the meantime is to take a pregnancy test.  Often, it will come back positive if cancer is present.  I wouldn't call this a definitive diagnosis either way, but tumors can produce the hormone hCG which is the same hormone embryos make.  If it comes back positive and you know you are not pregnant, then you need to be even more proactive about making sure you get the tests you need.  Good luck.  I hope it is nothing serious.  

Julieotte5
Posts: 8
Joined: Apr 2017

Oh I have never heard of the pregnancy test trick but I get one every 3 months and to my knowledge none were ever positive (at gyno before my depo shots). I've had a tubal ligation so I just assume they are negative, that and we never have sex.

CheeseQueen57's picture
CheeseQueen57
Posts: 717
Joined: Feb 2016

In my opinion, endometrial biopsy is worthless. It's painful and most times they can't get enough tissue to tell you anything.  Mine was negative and in reality I had Stage 3 endometrial cancer. Don't mean to scare you and I hope you don't have anything like that. But you need to get this situation investigated. I would agree that a transvaginal ultrasound would be in order and perhaps a D&C. Might want to jump to a gyn/oncologist just so you get the right tests to rule it out. Good luck. Keep us posted. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

There is definitely something going on so your concern is well placed. My gyn did two ultrasounds and a sonogram but still didn't realize it was a tumor in my uterus until a d&c was done and the pathology report came back positive. Has your gyn mentioned doing a d&c as an option? It's a bigger procedure than a biopsy but it may prove to be more effective at giving you a definite diagnosis the first time around. Try to stay hopeful! Come what may, you can get through this and we will be here rooting you on the entire way. Kim

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Two to three years of worsening pelvic pain is not "fine."  Sex hurting is not "fine." It's about time your doctor started doing some further tests. I agree the ultrasound is a good starting point, and with what you are experiencing, a D&C might be next.  Like Tethys, I know too many women who were misdiagnosed, sometimes for years.  It may not be cancer, but you definitely need your doctor to perform the tests to determine what exactly it is.

derMaus's picture
derMaus
Posts: 476
Joined: Nov 2016

You have a lot going on. I suggest getting some emotional support as well; it can't be conducive to your well being to have a new husband who "screams" at you because your pain "inconveniences" him. This is not normal or desirable.

Julieotte5
Posts: 8
Joined: Apr 2017

thank you everyone for the advice. I will be getting a trans vaginal ultrasound, i assume BEFORE the biopsy! These will both be done this coming Monday and I will certainly come back and post my results. I'm starting to calm down. I was misdiagnosed at 25 years old, I had gallbladder disease. But because I was 20 weeks pregnant no one would listen and no one would run any sort of test. My daughter arrived one month early and I went into liver failure in her two week birthday. So I have a very irrational fear of being misdiagnosed again. But I have faith that if there is cancer, it will get found. And my husband and have worked through a lot of our problems and I'm seeing just how long I've been in pain and didn't realize it because I was trying to cover it so he wouldn't get mad and now that I'm able to express it, it's been a sobering wake up call to us both.  

 

I will I'll be back soon to update and thank you for understanding that I'm just afraid. 

derMaus's picture
derMaus
Posts: 476
Joined: Nov 2016

It's great you can have the ultrasound and biopsy on the same day. For me, just getting the process started was comforting. You may want to ask about pain med's for the biopsy: my doc gave me nothing in advance and said it would only hurt for a minute. Obviously she'd never had a biopsy herself. If they demur and won't offer you anything, you might want to take a couple of Motrin beforehand (and, perhaps, a Xanax if you have it available). Keep us posted, and good luck on Monday!

 

Julieotte5
Posts: 8
Joined: Apr 2017

My gyn told me it was going to be very unpleasant. :/ at least he was honest. I've had female gyns and they tend to be less sensitive down there. Men drs in my experience are more gentle and understanding.

 

he told me to take motrin a half hour before my appointment so no numbing for me I'm guessing. I've had a colposcopy and it was pretty unpleasant too so this time around I plan to get a huge cup of frozen yogurt afterwards to make me feel better!

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

Hoping everything goes well for you! I wish I had found this site before I started my battle, I hope it's not cancer, but if - these women are an inspiration- and you are stronger than you think!  My gyno did my biopsy and I had very heavy bleeding When my results came in, he pretty much told me the same thing my gyno-oncologist told me- stage, grade and treatments. Best of luck!  Enjoy that cup of frozen yogurt!

Tethys41's picture
Tethys41
Posts: 1340
Joined: Sep 2010

Hope everything goes smoothly, the test results are clear, and the frozen yogurt is delicious.  Smile

Julieotte5
Posts: 8
Joined: Apr 2017

A mini update: today was the vaginal ultrasound and endometrial biopsy.

i tried to get the us tech to talk to me about what she saw but all I got was "looks normal".

go to exam room and the dr said my endometrial lining is a little thick but that could be where I'm at in my cycle--no number given. He also said I was free of polyps and fibroids. Given my pain and tears, he decided I need the hysterectomy. But still went ahead with the pelvic exam, a Pap smear since I was due in July for one, and finally the endometrial biopsy which holy heck, there are no words for that one. He said I should expect to hear back in a few days about my results and if nothing is found we will set a date for the hysterectomy so right now all i can do is wait and pray. but I wanted to update you kind ladies. 

Julieotte5
Posts: 8
Joined: Apr 2017

Also he did not remember that I've had two abnormal paps in a row. I pray that IF there's cancer it's found. I'm not afraid to have to go through it, I'm afraid of a misdiagnosis. I've had that happen before (gallbladder) and it almost killed me and my unborn child. This isn't a club one particarlarly wants to join! But if I have to well that's the way it goes.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

Julieotte, I just want to reiterate something Teths41 said, it there is any cancer go to a gynecologic oncologist to perform the hysterectomy.  Also, I know it is rarely down but make sure your hysterectomy is NOT done by morcellation.  Again, I don't think they use that method anymore, but I would still ask.  

I hope it is nothing and your pain is soon gone.  Hugs

Julieotte5
Posts: 8
Joined: Apr 2017

I've read that multiple times so I know it's pretty important. If they report cancer was found I am going to ask for a referral to a gyn-onc. From what I'm reading that doc can stage and grade during the hysterectomy? Where a regular gyn wont. Most people want it out asap but I'm one that would rather know exactly what I'm dealing with. and that usually means waiting.

 

i didn't get my fro-yo but my husband took the day off to go with me and took me out for lunch at a local greasy diner we love so that was even better. :)

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Julieotte, the fact that you've had two abnormal paps in a row and that they're proposing to do a hysterectomy is probably enough that you may want to consult with an gyn-onc PRIOR to consenting to surgery. My understanding is that staging and grading is best done during the actual hysterectomy rather than afterwards.

sshhaarrii
Posts: 36
Joined: Oct 2016

I wish I would have had a hysterectomy 15 years ago when my first gyn suggested it, I am now 55. Every month was extremely heavy and painful, fibroids. I figured it would all go away at the change of life, and it did for a couple of years, then UPSC happened, at 54. My gyn retired, too, and I started seeing my GP for check-ups. I had a suspicious ultra sound about 5 years ago, my GP tried to do a in office biopsy, but failed. She said I would need a out patient procedure, but for now she would just monitor. I waited a couple of years and changed doctors, started spotting, my new Dr growled at the "just monitor" recommendation and sent me for another ultra sound and to a gyn for a D&C, and waalaa it was cancer. My new gyn then sent me to a onc/gyn for treatment.

My cancer was still found in an early stage, but with the symptoms I had since my cycles started makes me wonder if I was cancer bound anyway or if I had chosen the hysterectomy 15 years would I be USPC free? 

 

Soup52's picture
Soup52
Posts: 850
Joined: Jan 2016

Yes, I feel like you. I had some heavy periods and fibroids. I just felt it was part of menaupause and not unusual. When I told my gynecologist, she said to call if the extremely heavy period happened again. Of course it didn't, so I thought the worst was over. Unfortunately it wasn't. Years later after menaupause enexplained bleeding and cancer not an early stage. This is why more education needs to be out there for women.

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

I had heavy painful periods for many years. I would tell the gyns I saw about it but was never told it was abnormal. Many, many years later diagnosed with uterine carcinosarcoma. They also found fibroids during my hysterectomy. Makes me wonder. Hope the way they treat women with problem periods has gotten better over the years.

Julieotte5
Posts: 8
Joined: Apr 2017

Well I got my results today--pap is normal and nothing abnormal on the endometrial biopsy. Diagnosis is adenomyosis. I'm scheduled for a LVAH hysterectomy may 30. I really want to thank everyone here for holding my hand and giving me the strength to speak up and ask questions. I won't soon forget that. I wish you all the very best in your journeys. Thank you again and I'll still be listening to my body. Thank you for letting me hang around here for a few weeks. <3

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1416
Joined: Jun 2015

Great news Julieotte5! So happy for you. Good luck with your surgery and I hope you heal quickly.

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I'm so glad that you finally have a diagnosis that helps explain what you have been experiencing. Good luck on the surgery and recovery. Wishing you all the best, Kim

Tethys41's picture
Tethys41
Posts: 1340
Joined: Sep 2010

You know you have had a scare when you're relieved to learn you have adenomyosis.  Good luck.  I hope all goes well and you feel much better. 

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

Hi, my name is Rosemary.  I am 63 yo and newly diagnosed with Stage IV UPSC.  I live in Baltimore and will shortly be beginning chemotherapy at Sinai Hospital under Dr. Abbie Fields.  I am stunned and afraid.  Investigating on internet shows the direst of prognoses.  Not sure what to believe, but feel that I will either succomb to disease or be physically diminished by treatment.  I need to be more positive going into treatment.  Prognosis unclear.  

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Rosemary, I am so very sorry to hear of your recent diagnosis. I know that it may seem impossible at this time but please do what you can to try to stay hopeful.

Please also try not to pay too much attention to the statistics you will read online. Many of the people in those studies could had other health issues that contributed to their deaths that were not listed in the reports. You are a statistic of one. Focus on you.

Treatment is not fun in any way but you will probably find that it is also not as terrifying as you may think. I had surgery, chemo and radiation and had very few side effects. I worked full-time (desk job) through both the chemo and radiation treatments. My experience may not be like yours but I'm sharing this so that you know that treatment is do-able and that others have made it through and came out virtually unscathed at the other end. 

At this early stage my advice is 1) try to gather copies of all of your surgery and pathology reports. They may come in handy if you need to get a second or third opinion (like I did). 2) Do some research and find out if there are cancer centers near you that specialize in your particular type of uterine cancer. 3) Surround yourself with a medical team who has your best interest at heart and then trust them to do all they can to help ensure that you have a long and very happy life.

You can do this! And we'll be here to help in whatever way you need.

Wishing you peace and strength, Kim

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

Thanks, Kim.  I'll do my best to stay positive.  My port placement is scheduled for 6/13.  Here we go.  Rosemary

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

rdifatta, I'm sorry to hear your news and know the ladies here will be happy to jump in and help.  There is LOTS of good information in the threads here - and it is not OLD like the data you probably see on line.  You will hear this from many, but YOU ARE A STATISTIC OF ONE.  We all know that overwhelming kick in the head, but you are not alone and we are here to support you.  

I am sure others will be along shortly.  Don't hesitate to start your own thread about you - you will always be able to find it.

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

NTFC, Thank you for your response and support!  I'll do my best to stay positive.  Rose

Nellasing
Posts: 529
Joined: Oct 2016

Oh my how I remember hearing those words and the panic and dispair that sets in.  Good news, once I stopped the waiting on surgery, tests, scans, healing from surgery, staging and began treatment something switched in my brain and I got on with moving forward.  Was treatment easy?  No.  Were there side effects? Yes.  Was it managable? Yes.  Did I get through it? Yes.  And you will too!  Someone once said they didn't see an expiration date stamped on the bottom of their foot and it's true- no one can tell you what you can and can not do because this life is yours to LIVE!

There are many many of us here in all stages of this journey and we are happy to link arms and walk along with you.  There are tons of threads here- I can still read for hours.  If you put a word in the top left search and look at the most recent info. it can really help.  Ask any questions, share any fears - we are here.   One day at a time sister (((HUGS)))

janaes
Posts: 666
Joined: May 2016

Hi Rosemary,  Last year about this time ( I remember because it started Chemo right after my birthday which is june 10th) I was in a very similair place as you are.   I cant help but think about how scared I was.  But I will tell you this.  This support group helped me eery step of the way.  My fears were calmed, my experiences easier because I was not alone.  When I had a hard day I shared it here and felt support and love.

I want to wish you the best as you go forward in your journey.  Let us know when you start you treatment.

Love Janae

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