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mtpat7
Posts: 20
Joined: Jan 2007

Hi everyone. First off, let me say that I'm not sure what my medical condition is right now. I'm scared, and looking for info and support.

Some background on me: I'm 49 years old, and have no children. I do have some other medical conditions: I have rheumatoid arthritis and I also (for some unknown reason), have gotten DVT's and PE's on several occasions. I am on top tier injectable drugs for my RA, and I take coumadin for my DVT's. I regularly get my blood work done to make sure my INR stays in range. I am also overweight, but have no family history of cancer.

At 49, I am still having regular periods. Mine have usually been fairly heavy, and not too long in days. Lately, they have been lessening. I should say that I had regular periods until about 2 months ago. I started what I thought was my period at the right time 2 months ago, but it was very light, and mostly just spotting. After several days, it stopped. Then, about 3 weeks later, the same thing happened. So, I assumed that the first one was a light period, and the 2nd one was too....and it was a week early. The next time though, it got strange. I started light spotting, but it never turned into a period...I just kept spotting lightly. Some days, I don't even need to wear a panty liner. Other days, I wear a pad. This has been ongoing for almost a month now....with several days of absolutely nothing happening.

I do get regular gyne exams, and my last was in Jan of this year, at which time she said my PAP was slightly abnormal, probably due to an infection that will go away, and that I tested negative for HPV. I decide to visit her again. Her exam was quick, and she suggested a transvaginal ultrasound. I had some really bad cramps last year and had several ultrasounds done to check up on a cyst, so I knew what I was in for. I also had CBC, thyroid and hormone testing done, and all of this was normal. For this ultrasound, the cyst was gone, but I did have a fibroid tumor that was a bit large. I was also told that my endometrial lining was 17 (mm?), and that was thick. They pulled my last ultrasound from 6 months ago, and it was 11, which my doctor said was fine for a cycling woman.

Since my lining was thick, she wanted to do an endometrial biopsy. She wasn't sure she could perform it, since I never had kids, and the cervix was clamped shut basically. :-) I was scared. I did go through with it, and it was painful. She was fast, but told me she couldn't get in as far as she wanted, but thought she had enough of a sample. So now...I wait. Tomorrow will be one week, and she told me I might have an answer by then. She happens to be on vacation for 3 weeks now, but her nurse will call me.

I did have some pretty bad cramping the night of the biopsy, but what happened next is what surprised me. My biopsy was done on a Thursday, and by Friday afternoon I had some really heavy bleeding, and some (not sure how to delicately phrase this), heavy clotting. By Saturday, it was so bad, I thought of going to the ER room. I was scared that possibly she punctured something, since I had never bled like this before. This continued all day Saturday. I had called the Dr's office and spoke to the on call Dr on Saturday, and she said it probably wasn't a puncture or anything wrong like that, but more of a "stirring things up" kind of thing. She gave me a Rx for a birth control, but I can't take it because of my blood clot issue. I told her that, but she said it was safe. I checked online too, and everything says not to take it. By Sat evening though, it started to subside, so I didn't have to take the Rx. By Sunday, I was back to just spotting. Then, something even weirder happened. Even though I am just spotting, for the last 2 nights, I will get a feeling that it's heavy again, and when I check, it is, and then I will pass a large clot, then I am back to spotting for another full day. Sorry for the graphic descriptions.

So....I know that endometrial cancer is rare. But I also know that I have some risk factors: no kids, obese, and abnormal bleeding. I'm trying real hard to not diagnose myself, but I also can't find much info online about what else it could be, other than endometrial cancer. Before my blood work came back, my doctor said it was probably related to my coumadin, or a hormonal issue. But...all my tests came back fine.

There....I got it all out! I am scared. I am recently divorced, with no support system in place. Unfortunately, I am somewhat of an introvert and never managed to make good friends. I am turning to this board for info and support, though I don't even have a diagnosis yet.

I guess what I'm trying to find out is: are there other reasons for a woman's endometrium to be so thick? Does this always mean cancer?

Not just am I scared of the diagnosis, I'm also scared of surgery. If I had to have a D&C, or a hysterectomy, I have real big issues because of my DVT's. Surgery is always like taking my life into my own hands. I guess in a perfect world, this slight bleeding would stop, and never happen again. I did have regular cycles until 2 months ago though. Is it possible to have cancer even if I had regular cycles till recently and the spotting just started?

So...now you've heard my story. It does feel better just to get it out. I will say, to those of you that made it to the end, thank you...and future posts won't be nearly as long. :-) Thanks for letting me spew this out. And if anyone has any words of advice or info, I'd love to hear them.

Thank you. Pat

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Yes there are other reasons besides cancer that you could be having bleeding problems from, ie, fibroids and being on coumadin as well as others. You say your blood tests are fine, but that was before the biopsy and the bleeding/clotting you had over the weekend. When your INR blood test comes back OK it means you are in the parameters of where they want you to be while on coumadin. It may be too high for someone to have an invasive procedure like a biopsy which would cause increased bleeding compared to someone not on coumadin.

I wonder what your CBC is now after all the bleeding and clotting. The biopsy you said was fast and she did not go in as far as she wanted to. I pray that your biopsy will come back negative. Please keep on top of monitoring your fibroids because your Dr may need to get another, further in, biopsy.

I would be curious what your medical doctor would say regarding you being on your usual dose of coumadin and having the biopsy. You might want to tell him also about the suggestion of you being on the birth control medicine to control your bleeding. He may have a different opinion.

As a nurse, we always take our pts off coumadin before invasive procedures. Some Drs change the medicine to a shorter acting blood thinner for a period of time.

Good Luck.

mtpat7
Posts: 20
Joined: Jan 2007

Update: My INR levels are supposed to be from 2.0 - 3.0. For the last 3 weeks, it's been 3.7, no matter how much the Dr. alters my dose. I went again yesterday and it was finally 2.5. I had told my gynecologist that I was on coumadin before the biopsy, and she said it was such a minimal thing she was doing that it was OK to have the procedure done and not stop my coumadin. In fact, I had just come off of Lovenox about a month ago, and was just having a hard time getting the right dose of coumadin figured out.

Yesterday, I had minimal spotting, so slight that I was totally grateful, thinking it had finally stopped. This morning though, I woke up to regular bleeding and some clotting again. I thought I would hear from the Dr's office today on test results, but nothing so far.

When I try to do research online, I can't seem to find much for why the endometrial lining would be so thick, other than cancer. If it were hormones out of control, I would've thought that would show up in the blood work. All she told me was that I wasn't menopausal, and that the CBC and thyroid test were good.

I'll have to check with another doctor on the BC pills. With my history of DVT/PE, I'm not comfortable taking them.

This experience has definitely shaken me up, no matter what the outcome.

Debi, thank you for your kind words. I appreciate your reply immensely. I've been feeling very alone so far, and had hoped that someone would respond.

God bless.

pjk
Posts: 17
Joined: Jun 2009

You're always welcome to post your questions and fears here! These ladies are great! Now let me say that I hope you end up with no cancer and therefore no reason to keep on posting here. :)

I know it's hard, but try to not get ahead of your doctors. You really will have more peace of mind if you just concentrate on the next step. Your next step seems to be wait for the biopsy. Can you do that? Just wait? Yes, I know how hard that is. But let me encourage you to take this journey only one step at a time.

IF the biopsy comes back suspicious, you will have plenty of time to research and ask your questions of the doctor.

When the biopsy comes back clean, you will have time to work through all the possibilities for your symptoms with doctor.

Either way, please come back and let us know how things are going!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Nicely said, pjk. It's easy for us to think the worse, worry, and fret. And get way ahead of things. Been there - done that.

Pat, I'm glad you have connected here. Try to stay in TODAY and if you can, distract yourself with things that are more pleasant than cancer and sickness. Keep reaching out to others - you will be amazed at how wonderful and helpful they will be. It's OK to ask for help.

My prayers and best wishes are with you,

Mary Ann

bella09
Posts: 37
Joined: Mar 2009

You and I have similiarities. I had a DVT in my leg in 1994 that broke off and went to my lungs. After testing, it was discovered that I have a Protein C Deficiency that my brother also has. Have you been tested for this? I am on long term anticoagulation. I have been on Coumadin since 1994. I am 51 years old, it seems like I have always had heavy cycles and have never had an abnormal pap test up until last December. I had been told in the past that Coumadin can affect monthly cycles and that one tends to bleed heavier during this time. I know that you are scared, but try to wait and see what your results are. I am praying that all will be well with you. You have many friends on this site. I was told back in 1994 that I could never go on birth control or take hormones due to the fact that I had a prior clot and the Protein C Deficiency. I would check with your doctor again. You are in my prayers.

Jean

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

Pat
Heavy bleeding and clots after an endometrial biopsy is normal. I bleed for days very heavy. I would be careful about the birth contorl pills i think the doctor must not have listened to you very well. As for surgery while on coumadin it can be done safely I have mine in Feb with the DeVinci robot very little blood lose and safe to do on coumadin. Just need ot be watched more carefully. As for cancer just wait and see i was suprised that i had cancer i had a ablation due to thick wall and heavy bleeding 2 years before the cancer was found. I know it is hard to wait and the bleeding is always a concern but if you are not using more that a pad in 2 hours you should be fine. Feel free to let it out with us as we have all been there and know how it feels to be alone but this site is awesome and very helpful. Keep us informed
Lisa
I am a nurse in MN

bella09
Posts: 37
Joined: Mar 2009

Lisa is right. I was on Lovenox for 3 days prior to my surgery and my doctor and the coumadin clinic monitored my INR levels. I had no difficulty with bleeding during my surgery. If you want to share, please let us know your results. We are here for you. I agree with Lisa to check about the birth control pills.

Jean

mtpat7
Posts: 20
Joined: Jan 2007

Thank you all for responding.

I'm not sure where to start. I still don't have test results back. I'm still scared.

I'm trying to take it one day at a time, but I'm sure you know how hard the waiting is. I hear you all when you say that bleeding and clots after an endometrial biopsy is normal. My problem is that the endometrial lining is "fairly thick" according to my gyne. The reason I went to see her was because I had already been spotting/bleeding for about 3 weeks. It's more like 4.5 weeks now. It was never as heavy though until she did the biopsy. After the first few nights, it seemed to settle down. Then, I was back to just spotting only. Yesterday, I had no bleeding or spotting at all. I was so relieved! Today, nothing until just a bit ago, and now it's heavy again, and I have some clotting going on again. I just don't understand why it starts and stops.

I spoke to my RA doc today and asked about the coumadin and methylprednisolone. Though they can cause irregular cycles, they usually don't cause the symptoms I have.

I'm a pretty big chicken when it comes to surgery....coumadin or not. Coumadin just makes me that much more nervous. I failed to ask about the birth control pills, since he was my RA doc only. I did ask about my CBC levels and he said it was only slightly lower than 4 months ago, and it was in range.

I don't care how old you are, you never outgrow wanting your Mom when things don't look good.

Thank you for listening.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Patricia,

Re: your wanting to be "bundled up and taken away". When I do my visualizaton exercise I often imagine being cuddled and soothed by one of my healers. If it doesn't happen in "real likfe" we can imagine it and get some comfort from that. Works for me.

Mary Ann

mtpat7
Posts: 20
Joined: Jan 2007

Me again. :-)

It's been 2 weeks since my endometrial biopsy and no one has called me. After pacing and pacing, I finally bit the bullet and called for results. Per the nurse: "Biopsy is benign, no endometrial cells present." At first, I was elated, then the 2nd part of her sentence kicked in. Apparently, the doctor didn't get a good enough sample.

My next step is to have a repeat of the transvaginal ultrasound on Tuesday of next week. She also mentioned that I should talk to another doctor in the practice about a D&C. So...I guess that's the path I'm on for now.

It was very hard waiting, but even harder not knowing. And now, I have more waiting.

On the plus side, after several days of light spotting with no gushing later, it's finally stopped. I've had 3 full days of absolutely nothing going on, and I'm loving it. But, I also know that I want to know that things are OK, so I will pursue the reason why this happened.

I will post my results later, if that's OK. My heart and prayers go out to each of you courageous women. Be strong!

Thank you for listening.
Pat

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Pat....I just don't understand why physician offices don't call PROMPTLY to let you know about test results. You would think they understand the anxiety they are creating! Am so sorry to hear that the sample was not adequate. Do agree that a D&C is a better way of getting the information you need! Will be thinking about you next week....keep us all posted on what is happening....We are all here to support one another!

Best wishes....Karen

bella09
Posts: 37
Joined: Mar 2009

I am sorry to hear that they did not get a good enough sample the first time. I don't think the doctors realize what we go through while we are waiting for results. I hope that you get your results much quicker after this next procedure. Please let us know how you are doing.

Jean

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Patricia, I loved the visualization of Sergi skating with Katerina in his arms.....I think I must see that movie....sounds beautiful.

Karen

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Wishing you well Pat on your D & C. Remember to have them monitor your INR more closely. This is not a minor procedure as they said the biopsy was. You may need to get your medical doctor involved to help monitor this. He may possibly change your medication. Good Luck.

mtpat7
Posts: 20
Joined: Jan 2007

I was wondering if you all might lend a hand with some questions I have.

I've never had a D&C, and other than reading on the internet, I'm not sure what I'm in for. Can anyone tell me their experience with this? I'm concerned about the pain afterwards, and if there's any bleeding etc.

I'm also wondering if the D&C is kind of like the gold test for uterine cancer. I thought I read somewhere that even if a D&C is performed, unless they test everywhere, the results might still be negative, even though they should be positive. How accurate is a D&C at detecting cancer?

I have my ultrasound on 7/28, and am supposed to talk to another doctor about a D&C, since my doctor is out of the office until mid August. Should I see a gynecologist/oncologist for this procedure to make sure they do a thorough job of it, or would a gynecologist be OK? And I don't mean to imply that a gynecologist wouldn't be fine, it's just that if I have to have this done, I want the best I can get.

For the past 3 years, whenever I schedule vacation, something medical comes up. Two of the times, I found out I had a DVT and once a PE. This time, my vacation is scheduled for Aug 7th. I'm going to see my sister and her family....with 3 year old twins. I'm really looking forward to it too. So now I'm wondering if I should wait until I return in mid August for the D&C or if I should get it over with. Any advice? I'm a little scared of having the D&C done, and then flying. Call me a nervous Nellie, but I remember when my hematologist advised me against flying for a while after the DVT's, and any surgery.

And one final thing: when they do a D&C, do you get results immediately or is there more waiting? And does the doctor perform a hysteroscopy during the D&C always, or is it only for certain reasons?

You'll have to bear with me....I'm a control freak. The more I know about something, the better I feel. The unknown is the scary part for me.

You've all been wonderfully kind to me and I appreciate it immensely. These are definitely tough times. My personal life has been in shambles, but I had thought I finally got my RA and DVT's under control, and now this. I'm not sure how you all do it. I'm running scared and I don't even have a diagnosis. You have to live with it everyday. You deserve gold medals as far as I'm concerned.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

A D&C was a very easy procedure for me. Your Gyn should be very capable of performing this procedure. I had mine done on a Friday and was home in a few hours. My dr. called me at 11:00 Monday with the results (not good). I had a little vaginal drainage the next day or two, but that was it. I resumed my usual activities the next day. No pain....was a little "washed out" but that was probably a result of the anesthesia. That is the second D&C I have had in my life and the first one was very similar. All in all, a very simple outpatient procedure.

Karen

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