Waiting for Biopsy

yardieblue · May 2018

Hello,

I've been reading your amazing posts and wondering if I should even post since I am just waiting for a biopsy, but here goes.

I'm 44 and pre-menopausal. I have 2 children.

I've been bleeding and cramping for the last 28 days. It is weird because it isn't heavy bleeding, but constant and mucusy. I've been on birth control pill continuously for over a year to prevent my periods from coming due to severe pain from what they think is endometriosis. At the end of February I had breakthrough bleeding and increased pain, so she switched my pill to a higher dose which I've been on until yesterday when she switched me again because I am still bleeding and she needs the bleeding the almost stop before the biopsy which we hope will be by next week.

The bleeding started after intercourse 28 days ago and hasn't stopped since although some mornings it is light and I think it's stopped and by afternoon I am cramping and bleeding more. I saw my gyno 2 weeks ago and she did an ultrasound and pelvic exam. This is my 2nd ultrasound and pelvic exam in 4 months because I saw her in January for my every 6 months pap for HPV and abnormal paps. Colposcopies have so far come back normal. At the visit in January I told her I was having pain with intercourse and achy pelvic pain after. She did an ultrasound at that visit and found I had 'sprouted' another fibroid since the previous visit in July. She said let's watch it and see and if it continues we would do a biopsy (the first mention of a biopsy in March and again 2 weeks ago).

Two weeks ago the u/s and pelvic exam were unremarkable and she said the 3 fibroids aren't large enough to cause the symptoms I am having. Even my lining looked good. So she wanted me to finish the 3rd pack of pills and figured the issue is hormonal. Fast forward to now...I'm still bleeding and cramping (now I can feel my uterus contracting) with the additional symptoms of bloating, fatigue, difficulting defecating, back pain (sometimes severe) and nausea. Previously she had mentioned an ablation, now she is asking if I am open to a hysterectomy. She said she is concerned about my symptoms. I'm concerned about my symptoms. She told me she would need to refer me to her partner if I want to go ahead with the hysterectomy and then I might not need the biopsy because I would be taking out my uterus anyway. My understanding is a biopsy is still recommended.

Sorry for the long post. Questions:

1. What happens if the bleeding doesn't stop? Can they still do the biopsy? Is a D&C better?

2. Should I just opt for the hysterectomy?

Thank you in advance.

YP

NoTimeForCancer · May 2018

YP, don't get too far ahead

YP, don't get too far ahead of yourself assuming you have cancer, HOWEVER, you need answers to why this is going on. I think you might need to push your doctor. If you had a D&C - that was what many of us had discovered we had cancer - and I am not saying you have it, but there is something going on. Increasing the strength of a pill clearly is not working - none of us are doctors but that seems pretty clear.

Try starting with a D&C and go from there. I don't know if your gyn is the going to go for it - but I hope so. Demand some answers and please know that we are here to help.

Northwoodsgirl · May 2018

YardieblueI and

Thank you for your posting. You have come to a great place for support and information. A hysterectomy is your last resort. You need a definitive diagnosis. Ask your doctor what she is suspecting is wrong and what she is ruling out. Weighing a sense of urgency with the best diagnostic test or tests and in what order of priority. Get the D&C and they will send a specimen of your tissue to pathology for analysis. Then you will know if you have cancer or not. If you don’t stop bleeding they will give you a transfusion. You can also get your records together and get a second opinion if not satisfied. I question why your doctor is suggesting an ablation with all of your symptoms. If you had a hysterectomy they better send your uterus to pathology for analysis to make sure you don’t have cancer. Keep pushing for your understanding of what the plan of ruling out diseases are in order to get to a definitive diagnosis. Take care! Lori

takingcontrol58 · May 2018

One other test

I would also get a blood test for CA125. It is important to have a baseline level of this
cancer marker. It will provide more information, in addition to a D&C, which will give
you an even better idea of what is going on.

Takingcontrol58

yardieblue · May 2018

Thank you

Ladies,

thank you for taking the time to respond. I‘ve been trying to be patient with the process of elimination my doctor is going through. I don’t want to be overly anxious, but after months of going back and forth, I’m anxious.

Thank you again.

YB

MugsBugs · May 2018

YP I agree with the other ladies - D&C first

Chances are you do not have cancer and it is probably just endometriosis (which I understand can be debilitating) and a hysterectomy may be a solution. However, you don't want to get a hysterectomy until you are sure you are not dealing with cancer. If it turns out to be cancer (which it probably isn't) you want to have a specialist (gynocologist/oncologist) -someone who NoTimeForCancer says is a specialist with 'below the belt cancers'.

I also agree with TakingControl58 that you should get the CA125 blood test!

Sometimes being a 'girl' is the pits.

Good luck and let us know how you are doing!

pinky104 · May 2018

Blood and Mucus

I had blood and mucus like you describe and a couple of your other symptoms, but no major pain. When you defecate, are your stools narrower than they used to be? I had UPSC (uterine papillary serous carcinoma) twice. The second time, it wrapped itself around my ascending colon, and my stools were narrower and more difficult to pass. It sounds like your case is more complicated than mine, so it may be something different. Have you noticed any odor to the mucus. Mine had an almost fishy odor. I agree with having the D&C. If it does turn out to be cancer, there are many things that a GYN/onc. would do that an ordinary gynecologist wouldn't do, and they're things that need to be done. The biopsy could miss something if not done at the correct spot. The CA-125 was accurate for me, but it isn't always. Go for the D&C. And good luck!

yardieblue · May 2018

pinky104 said:
Blood and Mucus
I had blood and mucus like you describe and a couple of your other symptoms, but no major pain. When you defecate, are your stools narrower than they used to be? I had UPSC (uterine papillary serous carcinoma) twice. The second time, it wrapped itself around my ascending colon, and my stools were narrower and more difficult to pass. It sounds like your case is more complicated than mine, so it may be something different. Have you noticed any odor to the mucus. Mine had an almost fishy odor. I agree with having the D&C. If it does turn out to be cancer, there are many things that a GYN/onc. would do that an ordinary gynecologist wouldn't do, and they're things that need to be done. The biopsy could miss something if not done at the correct spot. The CA-125 was accurate for me, but it isn't always. Go for the D&C. And good luck!

Narrow Stool

Yes, my stool are narrow and difficult to pass. My mucousy blood does have an odor, but it is almost like a chemical smell.

Harmony09 · May 2018

I just wanted to add that in

I just wanted to add that in my case, which may not be like yours....my gynecologist said that the "fibroid" wasn't big enough to be causing the pain or bleeding (2 months heavy and light at times). Thankfully she was proactive and ordered the biopsy right after the ultrasound, because it wasn't a fibroid in my case.

I hope you don't need us, but we're here if you do. You're absolutely doing the right thing by getting the biopsy. Best wishes,

Stacey

SF73 · May 2018

YB, please follow up until

YB, please follow up until you have a definite answer about what is going on with your body. I was 44 when I was diagnosed. I had two large fibroids and my gynecologist attributed the occasional spotting to those fibroids. I did not think she was taking my symptoms seriously so I found a new doctor who performed a hysterescopy and found the cancer. I am hoping yours is not cancer, people our age usually do not get the endometrial cancer. But because it is rare, physicians sometimes do not thoroughly check for everything. Please be your own advocate and find definite answers. Wishing you all the best!

yardieblue · May 2018

Harmony09 said:
I just wanted to add that in
I just wanted to add that in my case, which may not be like yours....my gynecologist said that the "fibroid" wasn't big enough to be causing the pain or bleeding (2 months heavy and light at times). Thankfully she was proactive and ordered the biopsy right after the ultrasound, because it wasn't a fibroid in my case.

I hope you don't need us, but we're here if you do. You're absolutely doing the right thing by getting the biopsy. Best wishes,

Stacey

Thank you Stacey

Thank you for sharing and for your kind words of support. At first I was excited to hear my three little fibroids weren't big enough to cause problems, then it occurred to me, if not the fibroids then what. On this the third day of the stronger pill, I started the day hopeful the bleeding had stopped. About 2 hours ago I found out no such luck. There is still tomorrow At least today I don't feel like I want to play in traffic (hormones are making me nuts).

Your picture is so pretty

yardieblue · May 2018

SF73 said:
YB, please follow up until
YB, please follow up until you have a definite answer about what is going on with your body. I was 44 when I was diagnosed. I had two large fibroids and my gynecologist attributed the occasional spotting to those fibroids. I did not think she was taking my symptoms seriously so I found a new doctor who performed a hysterescopy and found the cancer. I am hoping yours is not cancer, people our age usually do not get the endometrial cancer. But because it is rare, physicians sometimes do not thoroughly check for everything. Please be your own advocate and find definite answers. Wishing you all the best!

Cautious doctor

Thank you SF73 for reminding me to be my own advocate, I guess I try to have faith that the doctor will do the appropriate thing at the appropriate time.

My doctor has been cautious when it comes to testing. She was the first doctor to tell me my abnormal pap was due to HPV high-risk type 16. I get pap smears every six months and colposcopies if the results are still abnormal. I asked if doing a hysterectomy was an option at that time since I felt like a ticking time bomb and she didn't think the risk of infection, hemorrhage, etc. were worth it when we are actively monitoring for changes. She also had me do BRACA gene testing due to a family history of brain and ovarian cancer. All that to say I believe she is being proactive, but I would have wanted this biopsy back in March. She said based on the motility of my uterus, my unremarkable lining, and the small fibroids, I shouldn't be having this problem.

Harmony09 · May 2018

yardieblue said:
Thank you Stacey
Thank you for sharing and for your kind words of support. At first I was excited to hear my three little fibroids weren't big enough to cause problems, then it occurred to me, if not the fibroids then what. On this the third day of the stronger pill, I started the day hopeful the bleeding had stopped. About 2 hours ago I found out no such luck. There is still tomorrow At least today I don't feel like I want to play in traffic (hormones are making me nuts).

Your picture is so pretty

Hoping tomorrow IS better day

Hoping tomorrow IS better day! The not knowing is the worst for me...with the hormones a close 2nd

Glad you're staying out of traffic too!!!

SF73 · May 2018

yardieblue said:
Cautious doctor
Thank you SF73 for reminding me to be my own advocate, I guess I try to have faith that the doctor will do the appropriate thing at the appropriate time.

My doctor has been cautious when it comes to testing. She was the first doctor to tell me my abnormal pap was due to HPV high-risk type 16. I get pap smears every six months and colposcopies if the results are still abnormal. I asked if doing a hysterectomy was an option at that time since I felt like a ticking time bomb and she didn't think the risk of infection, hemorrhage, etc. were worth it when we are actively monitoring for changes. She also had me do BRACA gene testing due to a family history of brain and ovarian cancer. All that to say I believe she is being proactive, but I would have wanted this biopsy back in March. She said based on the motility of my uterus, my unremarkable lining, and the small fibroids, I shouldn't be having this problem.

Seems like you are in good

Seems like you are in good hands. Hope you will get to the bottom of this with your doctor. Take care!

yardieblue · May 2018

Update - D&C with Hysteroscopy Scheduled

I saw a gynecologic oncologist yesterday for a second opinion with the support of my gyno (she is going to be out of the office for 2 weeks and couldn't do the in-office biopsy if I didn't stop bleeding).

He scheduled me for a D&C with hysteroscopy on June 6th. The bleeding is getting heavier and I am passing larger clots even on the stronger pills. The gynecologic oncologist put me on Provera (medroxyprogesterone acetate) to try to stop the bleeding, but he will still do the D&C if I don't stop bleeding. Although the hysterectomy is probably the next step, he won't do the hysterectomy without first doing the D&C to be able to get the pathology first.

Has anyone taken Provera? Did it stop the bleeding? I have my pre-op clearance appointment with GP today where they will do a CBC to also see if I'm now anemic. I am feeling so weak and fatigued. I am on day 34 of bleeding.

Waiting for Biopsy

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