My 4-Year Medical Mystery

Gloryangelina · Posted: Sat Oct 03, 2009 4:38 pm Post subject: My 4-Year Medical Mystery

Hello,

This is my first post.

I am 34 years old and was diagnosed with high risk HPV about 10 months ago. After coloscopy, tissue removed from cervix was fine and I follow up with 6-month paps.

With that, I have been suffering from frequent urination, white blood cells in my urine but no bacteria. I am also vitamin D deficient, when I shouldn't be. As of late, my symptoms have increased 10 fold. I am now constantly drained and can sleep 12 hours a night. My periods, while always were irregular are now all over the place, heavier and painful with clots. In the last month, my bowel habits have changed. I have loose stools, pain with bowel movements and constantly experience pelvic pain. Oddly enough, I have had a sudden onset of slight vertigo (weird).

I was finally sent for scans of my bladder and kidneys last week, results of which were normal, but showed that I have a retroverted uterus, which is something I did not have as early as 3 months ago.

My question is... Is it possible to have Uterine cancer without bleeding between periods? Other than the irregular cycles and heavier flow, I have never experienced bleeding in between periods.

I have been tested for all STDs, came back clear. I am scheduled for a colonoscopy on the 19th, and US of my abdominal and uterus next week.

Has anyone experienced these same symptoms? I am very frustrated with the medical industry as I have been experiencing these things for 4 years now and still have no diagnosis, and often have to hear that "it may be in head" I know that something is not right, so I have to be my own advocate.

Thanks for reading. Smile

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 237

Welcome aboard Gloryangelina. I was just reading a few minutes ago about endometrial uterine cancer symptoms. Symptoms do vary--irregular, or longer and heavier periods may sometimes point to cancer. I still have the window I was in available on my computer, so I will paste from the page directly below. This is from http://oncolink.org in regards to symptoms of uterine cancer:--->

***...However, some of the other symptoms are occasionally non-specific, and don't always point toward a diagnosis of endometrial cancer. As a tumor grows in size, it can produce a variety of problems including:

* vaginal bleeding (in a post-menopausal woman)
* abnormal bleeding (including bleeding in between periods, or heavier/longer lasting menstrual bleeding)
* abnormal vaginal discharge (may be foul smelling)
* pelvic or back pain
* pain on urination
* pain on sexual intercourse
* blood in the stool or urine

All of these symptoms are non-specific, and could represent a variety of different conditions; however, your doctor needs to see you if you develop any of these problems. ***<---

The direct link is as follows:
http://www.oncolink.org/types/article.cfm?c=6&s=18&ss=137&id=8227&p=2

Being you were recently diagnosed with HPV, and are experiencing some of these symptoms--you need more testing concerning your uterus. I experienced very heavy bleeding, painful clots, frequent urination, bloating, fainting, a hard stomach, and a watery discharge. ...And pelvic pain, which I dare say would accompany much of any of those factors.

You should proceed with the ultrasound, but ultrasounds are limited. A women who continues to experience such symptoms, and gets no relief needs a biopsy in my opinion. Plus, just weighing all your symptoms, you need answers to what is going on in your body--cancer or not. I know too well how the medical community can discount what we say. It is not in your head, who would dream this kind of stuff up? Shocked

You need to confront your gyno or primary doctor and demand/insist/hound/cajole them for a biopsy or a D & C!

It is a good chance it is not cancerous, and as the material pasted above indicates; such symptoms can be attributed to a variety of factors. But if there is some kind of disease present, time always matter in a diagnosis--particularly cancer. You really do have to be your own advocate--and sometimes that means being a "bear" about getting the treatment you need. I am glad you are getting a colonoscopy, I have my first one coming up in November--been experiencing pelvic pain and I also have a Vitamin D deficiency. My endo prescribed 50,000 iu(s) tablet once a week--good grief--I didn't know D came that potent! I have been taken D and other supplements too since my diagnosis.

I hope your doctors get things rolling soon. I do urge you to press in on getting further testing. You can have timely periods, but as the symptoms above indicate, a problem may not manifest in a readily identifiable fashion such as bleeding between periods. I will keep you in my prayers, and please keep us posted on what is going on. Also would like to know how your colonoscopy turns out. Take care, and I am believing for the best concerning you.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

Gloryangelina · Posted: Mon Oct 05, 2009 3:38 pm Post subject: Medical Mystery

Thanks, Rhonda! I really appreciate the time you took to read and respond to my questions. Very Happy

I have another round of tests this week, so I will wait and see what comes of it. The word Endometriosis has been thrown around a bit by my Doctors in the last few days, and while neither Cancer or Endometriosis are good news, I just want to try to stay focused and positive. My experiences with all of these doctors has not been good at all and I am also pessimistic by nature which is not a great quality to have when you are going through uncertainty. Sad

The point is, no matter what it is, I have to accept it and kick it's butt!

Also, I read a bit about your story as well, and am amazed at how you stay so positive and focused. I think you are pretty incredible. It takes a special person to help others when they themselves are going through hard times. I wish you the best of luck!

Thanks again, and I will keep you posted on my outcomes, if there are any, this week.

Fingers crossed. Very Happy

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 237

Hi Gloryangelina:

Very Happy

How are you doing? What did your ultrasound reveal? I have been checking to see if you posted; and hope it is not too intrusive to inquire of your results.

I want to also thank you for your kind words when you last posted. Very Happy

I have been praying for you, and hoping for a great outcome on your colonoscopy. That is a lot of testing to go through in a short period of time, but in my opinion, i rather get them done quick and over with. You take care now, and I look forward to hearing from you. Like you said, whatever it is, you're gonna kick its butt totally off this planet! Wink

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

Gloryangelina · Posted: Fri Oct 16, 2009 10:33 am Post subject: Update

Hi Rhonda,

Thanks for checking up on me.

Well, a bit has happened since I last posted. I went for 2 ultrasounds. The first one was of my bladder and kidneys, which turned up normal. The second was transabdominal and transvag to check for any abnormalities and I am anxiously awaiting those results.

The second scan itself was VERY scary however. Since I have been for some many ultrasounds, the people who do them always tell me that everything is fine. This was my first scan of my pelvic region and transvag though, so obviously I was a bit nervous going in.

The girl did the scans and would not tell me a thing. I kept asking her and she kept saying she couldn't tell me, that I'd have to wait for my Doc. While I know that is true, and she really isn't supposed to say anything I figure that if nothing was wrong she would just say nothing was wrong... She spent a fair amount of my time my left side, which is where most of my pain is (i did not tell her that) and she kept asking me over and over if I ever have had any "breakthrough bleeding" which I have not, but my answer seemed to shock her. She left the room and came back in with another tech and they both proceeded to scan me every where on my stomach and lower chest. None of this was ordered, so I started freaking out - but neither one of them would say a word.

So, now I wait. I have been waiting for days now. If it turns out to be nothing, I really will want to strangle these girls for making me SO nervous. All I can think is that I have tumors everywhere. Horrible.

Something I also never thought about or researched was Ovarian Cancer. I started reading a bit about it and strangely enough I have every symptom....

Bloated stomach, pain, frequent urination, bowel issues, nausea and NO bleeding.

I need to stay off the research and wait for my Doc's answer. Smile

I will update as soon as I hear.

Thank you so much for caring. You rock.

Gloryangelina · Posted: Fri Oct 16, 2009 10:38 am Post subject: Sorry

I just noticed that I told you about the first scan already. Forgive me. Smile

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 237

Hey Gloryangelina :

No problem and you're forgiven-LOL Laughing

! I know what you mean about how the techs act. That happened recently to me on my thyroid scan, and today I found out I do have hyperthyroidism from the nurse--not sure what action the doctor will take, or if there is something more sinister behind it. But when they did the scan, I heard one tech whisper to the other, "This is bad..." Shocked

Then their voices lowered and I couldn't hear anything. Well, I said to myself "there is no need in speculating until I get my official results; otherwise I will just worry myself nuts".

I agree with you on researching symptoms--it is a good thing and a bad thing. It can lead you in the right or wrong direction, and flood your mind with thousands of horrible thoughts of what is possibly going on. Without the proper testing, a person will not have total relief from the worrying process, or the answers needed. But yes, the ovarian cancer symptoms and uterine share a lot.

I am on a speculation whirlwind myself now with new symptoms, and I find the best way to not worry is to busy myself with other matters. Pain sometimes interferes with this strategy. Confused

Yet realistically, I know anyone facing unanswered questions as to whether they have cancer is going to worry at times. Sad

Keep us posted Gloryangelina, and make sure they rule the possibility of cancer out concerning this bleeding. Some times you have to "order" necessary testing like french fries with a sandwich--I requested testing today, and I am praying the plate will be dished up right. I also want to say, if your doctor has not advised supplementing Vitamin D, maybe you should consider it, and request a dosage recommendation from her/him.

You take care now,

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

Clare30 · New User Joined: 11 Oct 2009 Posts: 6

Gloryangelina,

I know how you feel going through all this. It's nervewracking and very scary all at the same time. If you go back to the previous posting and read my story, you will see what a basket case I was last week waiting for uterine biopsy results. All I could do was imagine the worst. Thanks to Rhonda and Pixie here on this forum, they helped ease my mind. My results came back normal - thank God- but like you, I also was experiencing every single symptom of what I was convinced was endometrial cancer. You are so young, and your symptoms can be products of other less serious conditions.

As far as the ultrasound techs go, do NOT put much emphasis on their behavior. When I went to get my tranvaginal ultrasound done, I actually knew the tech very well who was doing it. I work at the hospital where I had it done. I was taken aback when I asked the tech if there was anything she saw out of the ordinary, and she told me that she couldn't comment. I kept asking her, and she kept telling me that I would have to wait for the report from my doctor. I had myself totally convinced that she had to have seen something bad on there, because if everything looked normal, then why wouldn't she tell me so? (Keep in mind, I knew this tech since I've been working at this hospital for over 10 years.). A few days later, I got the ultrasound results and they were normal. And all I could think to myself was, why didn't she (the tech) tell me everything looked ok?!? Confused

Same experience with my biopsy results - after not hearing anything for a week, I called my doctor's office and got the nurse on the phone. She put me on hold to see if the results had come back, and then told me that they did. I asked her what the result was, but she told me that she couldn't tell me anything - that the doctor himself needed to talk to me about them. If I wasn't freaked out enough before this, I totally lost it when she said this to me - crying and sobbing. I used the same kind of logic -- why wouldn't she just tell me the results were normal if they came back normal?? There had to be something really bad there. A while later, I called back and got the doctor himself on the phone. He told me that everything looked fine, and there was no cancer found. As happy and grateful to God as I was, I couldn't help but wonder why the nurse couldn't have just told me that when I spoke with her. It's really cruel, I think, to do that to people; especially when they know that patients are hanging on their every word and action.

Please hang in there, and post to let us know the results. Everything will be fine.

Pixie · Regular Joined: 15 Sep 2009 Posts: 24

Hi Gloryangelina,

I'm sorry you have to be a member of this forum Sad

Like Clare and Rhonda said don't start freaking out over your ultrasound, as far as the techs go, they are not allowed to tell you anything. Can you imagine if they told you that everythings ok and then it turned out differently.

Here in Germny the Doctors themselves do the ultrasounds, so I was told there and then that there was a lot of old blood and some abnormalities in my womb. I may be wrong but I don't think they can see a tumor from the ultrasound, the only real diagnosis is from a biopsy, or D+C.

Although the internet is wonderful, it is sometimes not a good idea to research too much, I'm starting internal radiation is a couple of weeks and am convinced that I'm going to get every side effect known. I've been reading all the horror stories of what can go wrong!!

Hang in there and take care, we are all here for you.

Rhonda, I hope everything is ok with your thyroid scan, hyperthyroidism is easily treatable, I hope and pray that it's nothing else.
_________________
Endometrial Adenocarcinoma FIGO stage 1b Diagnosed September 2009

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 237

Thanks Pixie, I did have a biopsy of the mass in early summer this year, and it reveal no cancer cells so I am hopeful. I hope you are doing ok with recovering from your hysterectomy. Is your internal radiation before your external?

Gloryangelina, like Pixie says, we are all here for you. Keep strong--those answers are coming soon! Thanks Clare for what you shared--I agree. It seems to me when the nurse gets the results, they ought to be able to share it.

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2

Pixie · Regular Joined: 15 Sep 2009 Posts: 24

Rhonda- I'm not having any external radiation, apparantly all I need is 4 doses of HDR Brachytherapy, once a week for 4 weeks. It's a bit difficult understanding everything even though I speak fairly fluent German and am a nurse. I do wish sometimes that someone would explain everything in English Laughing

As for the hysterectomy, I'm almost back to normal, everything has healed and I've had no symptoms of the menopause. Laughing

I'm going back to work next week until the beginning of November when I start radiation.

Clare- I hope you doing well and Gloryangelina let us know how you are feeling.
_________________
Endometrial Adenocarcinoma FIGO stage 1b Diagnosed September 2009

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