Scared & just need a little reassurance!

Lizizurtx · Regular Joined: 24 Sep 2009 Posts: 13

Hi there,
I'll try and keep my story brief!! I am 30, 2 miscarriages, no kids, no other gynacological problems in past (i.e. normal paps, normal periods).
I had a miscarriage in early March, natural, no D&C, everything was shown to be fine.
A month later I had my first period, it was fine.
A month later I had another period that lasted 11 days.
14 Days after that I had a period that lasted 2 months. I had been to my family dr throughout this time and she ordered an ultrasound which showed that I had a very small cyst that was looking like adenomyosis and some endometrial thickening but neither she or the radiologist thought the findings were significant and thoughts were that I was having some difficulty with hormone regulation.

Now up to this point there was no pain at all (usually I do have moderate mentrual cramps and can usually feel when I was ovulating but my Dr. informed me that after a preg/miscarriage sometimes a womans cycle can change).

I ended up going to the ER one night because the bleeding was getting significantly worse. He took some swabs which came back fine and did an internal which he said seemed fine. He ordered me on a 5 day course of a highly concentrated birth control pill called Ovral 21. He said this should trigger my body into ovulating and assured me that the bleeding would stop.

It did stop but only for about 3 days and then I started experiencing cramps and pain. My family dr was going away on holiday and she said that if the Ovral didn't work then she wanted me to start on the BCP Marvelon. So I did and have been on it for the last 3 months.

Since I have experienced painful periods (like nothing I have ever been through...the miscarriage was easier). The bleeding is heavy but the pills seem to control the flow and make the fresh blood stop within about 7 days.

The reason I am posting to a cancer forum is because I am terrified I have cervical cancer or perhaps even ovarian cancer. Even though the fresh blood stops on the Marvelon, I still have this dark brown discharge that lasts pretty near my whole cycle. Even when I bled for those two months, alot of it was this old blood/brown discharge. I am thinking that if it is a hormone imbalance then why is this discharge still happening? Shouldn't it be controlled like the fresh bleeding?

Further I feel my symptoms are worsening. A lot of pain has developed on my left side (around the ovary area and it feels like something is stuck or is in there--sorry the only way I know to describe it). I recently had another ultrasound on Aug 20th and it came back clear...no cyst like they saw in the earlier scan, no thickening or anything.

I am waiting for my Gynacology appointment which is in November (the earliest I could get and I have known about it since August) and the waiting is so unbearable. Not to metnion this has been hard on the psyche because I haven't been able to fully get over my loss.

I have done tons of research on endometriosis, adenomyosis, cysts and now things like cervical & endometrial cancer and I am worried that it's going to be it for me and my desire for kids.

I have so long to wait before my gyno appointment and I thought of seeing if my family dr could order some other tests and perhaps redo the pap but she is now away for 2 weeks too.

As you can see I am suffering a little bit from anxiety. I just need to let it out and perhaps someone can say the right words to make me put this all in perspective and help me get through the next few weeks.

Thank you so much for reading and getting through all the details.

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 332

Hi Lizizurtx,

Welcome aboard. I am so sorry for the loss of your baby. I can only imagine how difficult a miscarriage is to deal with emotionally. I can certainly understand your anxiety--you need answers, and I believe you are taking wise steps to seek those answers. Continue to try to get into an appointment at an earlier date, even just to put your mind at ease.

The fact that you are experiencing pain, and this discharge would be disconcerting to anyone--it does warrant further investigation. Your symptoms do not necessarily point to cancer, but--it does not rule it out either. Sometimes you have to be point blank with your doctors--and flat out tell them you want testing to RULE OUT cancer. It is not in left field to request this given the symptoms you are experiencing. As you mentioned in your post, (and know up front my medical knowledge is very limited ) I also assume the discharge would be gone through using your medication.

One thing I do suggest, make a list of questions to take your gynecologist before you meet in November. Also, keep a journal of how much bleeding occurs, describe your pains, and note the characteristics of the discharge. Bring that to your appointment as well. I know waiting is hard, but try not to worry and think the best. (I also know that in reality--you will worry some--how can you not?) MOST of the time, cancer is NOT found. Unusual bleeding occurs for a variety of reasons: hormones, fibroids, endometriosis...Also, the internet provides a host of information on symptoms, and many of them overlap--it can drive you crazy with fear speculating. You need tests to rule out cancer, and proceed from there after you know you are in the clear from it.

I will be praying for you, and I hope you get those answers soon. We have been blessed on this forum to see positive stories from women who suspected cancer, and it turned out to be a less threatening issue! Believe that you will be one of them! Wink

I hope you can get in earlier so you get better clarity on your condition. I am believing the best for you, and keep us posted.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

Lizizurtx · Regular Joined: 24 Sep 2009 Posts: 13

Thank you Rhonda for the response. Your words do help me relax and feel more in control. Control is the big thing with our bodies isn't it...myself I am just not handling the fact that I don't know what's going on and have to wait to begin the process of finding answers. So those are the biggest issues with me..control & patience!!! Laughing

Thanks for the great advice too. Yesterday I started a list of questions I want to ask my Dr. in two weeks and closer to my appointment with the gyno I am going to do the same. I also started keeping a journal back in April when I first noticed that things were not in sync with my regular cycle. I have taken it with me to all my appointments & ER visits in the last few months and it has proven to be very useful in keeping everything straight that has been going on. (I went am a nurse and I guess I am in the habit of documenting, documenting!!).

You have given some great advice too that I needed to have told to me. I can't thank you enough. I have read many of your other posts and the one thing you say over & over is RULE IT OUT! I was having a hard time facing the possibility of cancer and plus at first I was connecting everything with the miscarriage, thinking that all my symptoms were related to losing the baby. Then it hit me (after doing some research, looking at my symptoms) that it might have nothing to do with the miscarriage..and might be something else...like cancer.

Another thing I read that you say is ADVOCATE FOR YOURSELF and that is what I've got to start doing. I am going to have to say to my Dr in 2 weeks that I want to rule cancer out and these are the tests that I want. My goal is to try and get a few of the preliminary steps done before I have my gyno appointment in Nov, that way when I get to the gyno hopefully I can have a diagnosis (of some sort) and he can recommend the next move.

It's just so hard to say cancer...I want to rule out cancer. But I am going to have to do it.

As you can see fear is driving me. My husband says that because of my job I know too much and sometimes it's a bad thing. But I'd rather know the possibilites, signs, symptoms than just be ignorant to it all. Crap...or would I??? Rolling Eyes

Thank you so much again for your advice & prayers, I really do appreciate it. I see you have been a long time member and I think it's wonderful that you continue supporting others...& me! Very Happy

Hope you & everyone reading is well!

Lizizurtx · Regular Joined: 24 Sep 2009 Posts: 13

Yes, I am posting again!!

But I took Rhonda's advice to heart and advocated for me!

I called my gyno today looking for an earlier appointment than Nov.
They told me a month ago that they never get cancellations but I would be put on an 'short notice' call-in list.
I decided to bug them again today (i.e. advocate for myself) and just see if there was an opening and there was for the end of October!!
I got a whole week chopped off my waiting time!

I know it's not much but it's a small victory for me, plus it means a week closer to finding some answers.

I never would have had the guts to phone today if Rhonda hadn't reminded me to take control of my situation.

Thank you!!

Pixie · Experienced user Joined: 15 Sep 2009 Posts: 70

Hi Lizizurtx,

Welcome to the forum. I'm also a new member but I just wanted to say you're not alone with your fears and anxieties.

As Rhonda said RULE OUT CANCER. I also bled on and off for months before collapsing at work one day and ended up having an emergency D&C the same night. I ended up with a dagnosis of endometrial Adenocarcima a couple of weeks ago. Even though the diagnosis is horrifying it was actually better than all the waiting and not knowing what was wrong.

That's great that you've got an earlier appointment, however if you start bleeding heavily (clots) is it not possible to go to your ER and get it sorted out earlier.

Take care and let us know what is happening

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 332

Hi Lizizurtx:

I am so glad you got in earlier! Very Happy

Getting in earlier really is a victory these days--way to go Lizizurtx! I agree totally with Pixie--it is so hard not knowing what is going on--waiting and not knowing is simply tormenting. Meanwhile you will still be in my prayers and I am hoping for the best. As Pixie mentioned, keep us updated here.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

Lizizurtx · Regular Joined: 24 Sep 2009 Posts: 13

Hi there,

I been waiting patiently for my gyno appointment for months now and today was the day.

As for whether the appointment was a success or disappointment, I am not sure how I feel. In some ways I felt rushed (after waiting over an hour) and like I didn't get all the details out that I wanted but he also seemed to know what to ask and didn't want to get bogged down with the nitty gritty details.

Based on my history he feels that I am not ovulating and that there is a hormone imbalance. In fact he said he is "positve" I am having hormonal trouble and it is the cause of all my symptoms. He also said that based on the ultrasound I had in June which showed the adenomyotic cyst and endo thickening it is most likely I have adenomyosis but he said that will not affect my fertility or ability to carry a baby to term. He said that 30% of his patients have this and don't even know it and to top it off he has delivered their babies...so it can be done. He asked about prior paps and cancer history in my family but that was it.

So he ordered a hysterosalpingogram (HSG) to see if there are some fibriods causing trouble and to see if my fallopian tubes are clear (as opposed to blocked) as well as a whack of blood work to check on my hormones. In order to have the hormone blood work done I have to go off the pill and have the blood test 6 weeks later. I understand why, no sense in checking my hormones if the pill is controlling everything but it is is scary because of my problems with bleeding that I was having before.

I don't know...I got home and felt like I should have pushed more to rule cancer out. At the same time he did make me feel confident when I was in his office that I was in good hands and that he was going to help me get to the bottom of things. I think the relief that I was going to get help just flooded over me and I just dropped everything I wanted to cover. It has been such a burden of worry to carry these past 8 months.

Anyway, that is where I am at.

Anyone had an HSG that can give me some real life experience/info/tips about the procedure? The gyno assured me it's nothing to be worried about and I did a little web searching when I got home but some real stories would be nice. Very Happy

Hope everyone is well.
Liz

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 332

Hi Lizizurtx:

I understand where you are coming from. I think the best thing is to continue by taking the hysterosalpingogram, and see where it goes from there. If your hormones seem normal from the blood work, and your hysterosalpingogram comes back clear, I would push for more answers. Additionally, if your pain has not resolved, you need to know the root cause of it. As your doctor speculated, adenomyosis may be what is causing it, but my knowledge of it is limited. It does sound very encouraging! Hopefully others with direct experience will reply. Thanks for letting us know what is going on, and take care of yourself Very Happy

.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

brendawashington · Posted: Tue Jan 12, 2010 2:11 pm Post subject: it is just a word

Cancer is just a word. It has a million different meanings. Sometime it means growth and survival. Sometimes it means suffering. Sometimes it means pain and death.

In our world today, Cancer is still laden with intense meaning. People assume it is a death sentence. It is not!!!!

I encourage each of us to try and diminish the power of this word. Cancer, for me this day, is a word meaning challenge.

I am challenged. But I am strong and so are you. In fact, through these challenges, we find strengths we never knew we had.

Love and encouragement to you all!
Brenda
_________________
56 years old

7/2003 dianosed with stage 1c invasive ductal carcinoma lft breast -mastectomy and reconstruction.
10/2005 diagnosed with DCIS of rt. breast- mastectomy and reconstruction.
12/2009 diagnosed with Stage Ib invasive endometrioid adocarcinoma FIGO Grade II with penetration of one third of 2.0CM thickness of myometrial wall. Endocervical canal free of neoplasm.
we must all fight ! God loves us- don't forget.

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