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Scared - looking for advice :)

hscvt
Posts: 16
Joined: Nov 2008

Hi everyone - I am happy I found this discussion board - hopefully someone can give me some advice.

Two cycles ago - I started having bleeding inbetween my periods. The last cycle went like this...Period was October 11-October 20...then started bleeding again on October 24-November 12. Now started bleeding again on Monday November 24th. Not sure if this is my actual period or not but guessing it is. I also have pain during intimate times (which is new) and had bleeding after as well. I went to have an ultrasound done on November 5th which I was told by my doctor's office that they saw "something" on the ultrasound but were not able to evaluate it so I had to have a repeat. Well I had a second ultrasound done on Friday November 21st....Hadn't heard from my doctor's office yesterday (Tuesday 11/25) so I called them. I got a call back from the nurse of my doctor's partner since my doctor was not in.

The nurse told me that the fibroid has not changed from the last ultrasoudn. OK, well I didn't even know I had a fibroid - no one told me that the first time around. But then she said that I would need to have a test done where they put saline in my uterus and then have a biopsy taken. I thought that was odd for a fibroid but she told me my actual doctor would call me today.

So my doctor calls me today and says to me that I do have a fibroid - but that the fibroid is not of any concern. It's small - only about 7mm...so she doesn't think that is causing my symptoms. Then she proceeded to tell me that what is worrying them is that the lining of my uterus is thickened. She did not tell me what the measurement was and I tried to call back later today to ask but missed her call back. Anyhow, she told me that on both ultrasounds it was thickened and wants me to go to a GYN since she doesn't do the test that needs to be done (She's a family doc)...

So she wants me to have the test that was told me the day before - saline in the uterus and then a biopsy. When I asked her what would cause the thickening - first thing she said was cancer. Then she said it could also be a polyp that they couldn't see right now.

I'm 35 years old - and have a history of heavy periods which are getting worse, with alot of cramping as well. I also started having spotting before my periods started. Now with the signs I have that I mentioned above, I also have pelvic pain, heavy feeling in my pelvis, pressure in my bottom area, feel like I can't fully empty my bladder and have to urinate all the time.

So needless to say I'm super worried right now. I have been totally exhausted lately but I also have fibromyalgia so have just thought it was because of that. I have an appointment to see the GYN next week Thursday so they can review the ultrasound and talk about the next steps.

Just looking for anyone that can relate to what I am going through. Of course when my doctor said cancer - she followed up with "we usually don't see it in 35 year old women" however, I know it's certainly possible.

Thanks in advance!

deanna14
Posts: 733
Joined: Oct 2008

Hi, I'm Deanna and I am 39 years old and I am currently undergoing treatment for uterine cancer. I had mixed endometrial and papillary serous cancer. It is silly for me to say don't worry, because I know you will until you get an answer, so I won't. I will tell you my symptoms and what took me to the doctor. I also had endometriosis and I think that probably delayed my diagnosis because at first I was told that my symptoms were related to that. I first starting having pelvic and rectal pain and pressure and constipation. My periods had always been painful and heavy, but they did get longer. At first I started spotting several days before I started my period. Then I started spotting after my periods. They did an ultrasound and found thickening of the endometrial lining. I was told that it could be fibroids, polyps, infection or maybe cancer. My gyn didn't think it would be cancer because of my age. Then I had a hysteroscope with a D&C which is where they found the cancer. I am so thankful that he did not ignore my symptoms because of my age!
My advice is be sure that they do a biopsy or a D&C or something that will tell for sure why the endometrium is building up like that. If you don't get a definate answer, seek another opinion. Time is important, so you'll have to be your own advocate and don't let them put you off. Especially don't let them put you off because of your age. I am living proof that the age guidelines are just that... guidelines.
I will say a prayer for you that everything is okay. I check this message board just about every day if you need to talk. Let me know what you find out. My heart aches for you, I know how hard all of the waiting is.
There are also 3 other ladies that post to this board almost daily. I feel safe in saying that we will all be here for you. Hang in there. Keep me posted.
Deanna

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Deanna put a call out for us to "rally round" you, and here I am. Although my uterine cancer had NO symptoms, and was caught during a PAP test (something that I was told NEVER happens, as PAPs are not tests for uterine cancer!), I will echo what Deanna advises. You need to be aggressive at getting answers. My biopsies were all 'non-dignostic', meaning they couldn't really tell what those abnormal cells from the PAP were. It wasn't until they did a D&C and they removed a tiny polyp during that procedure, that the possibility of cancer seemed even likely. A D&C might be helpful in dealing with your heavy periods regardless, and if I were you I'd be suggesting that as a diagnostic tool rather than waste a couple weeks getting biopsies and waiting for those results. (I was able to hop on a plane 2 days after my D&C and go on a 9-day hiking trip, so don't be afraid of the D&C.) Have the pathology from the D&C analyzed by a gynecologic oncologist, even if you have to travel several hours to see a gyn-onc. Neither my family doctor or gynecologist were able to truly diagnose my cancer and help me start fighting it; it wasn't until I saw a gynecologic oncologist that I got the treatment I needed. And, sweetie, even if it is cancer, it's not NEARLY as bad as it seems at first. You treat it; you keep fighting it; and you get on with your life. But be your own advocate. Don't let them pooh-pooh this. If your doctor takes a "let's-just-keep-an-eye-on-this" attitude, you need to get a second opinion from a Gynecologic Oncologist so that you can rest easy at night. (((((HUGS)))))).

hscvt
Posts: 16
Joined: Nov 2008

Thank you both for responding to my post. I appreciate it. I am worried - I would be lying if I said I wasn't. I've always had irregular periods but the cramping is getting much worse, I have my period for a longer time and then the bleeding inbetween the periods that is occurring now. I really do just want an answer to what is going on and why the lining is thickened. I will be calling my doctor again tomorrow because I do want to know what the measurement was from both ultrasounds - I was at work when she called me so of course I didn't think about asking all of those questions :) I teach - and was in the middle of a lecture when she called so I had to run out of the room, get the call, then go right back to teaching. So it hit me once I was done with class.

If it is cancer, then so be it right? I can deal with it and do what needs to be done. Thanks for encouraging the D&C be done - I was wondering about that since I have read alot about how sometimes a biopsy is inconclusive or they can't complete it. Would the D&C take place of the test where they inject saline in my uterus as well? I'll talk to my GYN about all of this when I go on Thursday.

I don't know if I mentioned this but I had my tubes taken out 3 years ago because I had a history of ectopic pregnancy. I wanted a hysterectomy, but she wouldn't do it beacause there was no medical reason and my insurance would never pay for it. So I don't have tubes at all ..only a uterus and my ovaries. I am overweight since I have fibromyalgia - which prevents me from walking everyday like I used to (4 miles) so the weight has been put on ..plus with the meds I take that cause weight gain.

I was really hoping it would have been the fibroid that caused all of my symptoms but since it's so small, my doctor doesn't think that is what it is.

I am going to start looking at GYN Oncologist just in case. I don't want to waste alot of time if it is cancer.

Thank you again - I really appreciate it. I'll definately be posting after my appointment on Thursday to see what they are going to do next.

Happy Thanksgiving to all!

deanna14
Posts: 733
Joined: Oct 2008

I would agree with Linda... encourage the gyn to skip the biopsy and do a D&C. When I originally got the results of my D&C, the gyn thought that it was possible that the cancer was removed by the D&C alone. Of course, he still referred me to a gyn/oncologist because that is the proper course of action for the diagnosis. Once cancer is found in your uterus, the only way to stage it properly is total hysterectomy including lymph node biopsies. Finding a reputable gyn oncologist is advisable as there are studies that show that women who are treated by gyn oncologist have better outcomes.
Again, I hope and pray for you that none of that is necessary, but if it is... you may as well know what to ask for. Linda is right, if it is cancer, it is overwhelming at first. As time goes on, you accept it and do what you have to do.
In the mean time take care of yourself, God bless and give you peace!
Happy Thanksgiving.
Deanna

hscvt
Posts: 16
Joined: Nov 2008

Do you have any recommendations on how to find a good GYN oncologist? I am not trying to jump the gun and I hope that I don't need to go this route - however, in case I do, I would like to have somewhat of a handle on it now. That way I cut down on time and also I can only imagine my head will be spinning if I do get a diagnosis of cancer.

I will talk to the GYN on Thursday about doing a D&C instead of just a biopsy. I am glad you both suggested that since I was wondering if a biopsy was the right way to go. I was fearing that they would do the biopsy and it would come back inconclusive, so then I would have to go have something else done anyway. Do you think that if I have a D&C, that would also take place of the test where they inject saline into my uterus? I have had that done once before and it was not comfortable, so I would rather not have that done again if it's not necessary.

Thursday can't come soon enough - this is going to seem like forever. Well then again I am only going to be talking with the GYN and not having anything done - but I hope that she gets going on it and gets something scheduled soon. I am so nervous right now. LIke I said I woudln't be as worried if I had the thickening of the lining without any symptoms.

I just feel the need to write all my symptoms again - sorry for the repeat....Irregular bleeding (bleeding between periods and spotting prior to period starting), pelvic pain and pressure, pressure in my bottom, pain during intercourse and bleeding after intercourse, feeling as though I can't empty my bladder completely and frequent urination. I also struggle with constipation but thought it was due to the meds I am on for the fibromyalgia. I also have had heavy periods which are getting worse and horrible cramping. My periods also are lasting for about 8-10 days which is longer than they normally do.

Anyhow, thank you so much again for your help and sharing your stories - both of you - I really appreciate it.

I don't know if either of you have dealt with much cramping at all but is there anything you recommend for that? I have horrible cramps right now that are worse than usual and slept with a heating pad on last night (all night) plus have been popping ibuprofen like crazy. That's the thing also - I normally would get cramps with my period but ONLY on the first day of my period - that would be it - well now I am having cramps almost all the way through the period and then I feel cramps in between my periods as well. Oh and when I wasn't bleeding this last time I had a discharge that I normally don't have - mucousy, thick but no odor.

Thanks again and have a Happy Thanksgiving!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I agree with Linda a Deanna. I sometimes had cramps 7 days before I even got my period. I too always had heavy bleeding (all my life), cramps. Never had normal periods...

I had to urinate all the time and bowels change too. They OB/GYN saw thickening in my uterine lining and a fibroid and told me he didn't think it was an OB/GYN problem but I persisted with him and he did a biopsy.

Like the other ladies, don't panic but don't wait and be persistant with the doctors don't let them drag their feet. We are here for you.

Take a deep breath and have a Happy Thanksgiving.

Hugs and Prayers

deanna14
Posts: 733
Joined: Oct 2008

Again, I don't want to alarm you, but all of your symptoms are very familiar to me. I'm not sure how you find a gyn/onc. I live in Springfield, Missouri and there are only 2 in our city. I went to the one that was covered by my insurance policy as a preferred provider. Also, he did my mom's hysterectomy 14 years ago as she also had endometrial cancer found during a routine pap. She did not have to have any other treatment, other than the hyst. Everyone I have talked to says he is the best in our area. So in my case, I didn't have much choice.
Anyway, I know that waiting is hard, but hopefully this is nothing serious. Take care, try to relax.
Keep us posted.
You are in my thoughts and prayers.
Deanna

hscvt
Posts: 16
Joined: Nov 2008

Thanks again - I am dealing with some awful cramps right now and have spent all day on the couch with a heating pad - so not the best Thanksgiving. I am really trying not to worry...I think if I didn't have any symptoms I wouldn't be worried as much - I just hate having to "wait" to know what is going on with me.

I spoke with my mom earlier who is an RN and she also agreed that it might be best for me to have a D&C instead of just a biopsy in case that would come back inconclusive. I'll talk to the GYN on Thursday when I go.

I am going to call my primary tomorrow and ask about the measurement of the lining. One of my friends asked why I wanted to know that - well I just wanted to know. I am also angry right now because no one told me from the first ultrasound that the lining was thickened. The nurse just told me they saw "something" but couldn't evaluate it so I had to have a repeat. But when I talked to my doctor she told me it was thick on both ultrasounds with NO change. So that made me angry - plus they saw the fibroid on the first ultrasound as well. No one told me that at all.

I also remembered that a year or so ago I had an ultrasound because I was having pain and one episode of abnormal bleeding - at that time I was told I had a cyst on my ovary and free fluid present. The doctor thought that the cyst leaked and that was what the fluid was from -but that is all I know. I am going to mention that to my doctor as well to see if there is any connection at all.

Thanks again and I hope you had a good Thanksgiving!

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