?? kinda confusing

[Jena]

so i went to the dr. a bit ago, she had the nurse call the lab to get my cbc back from blood she took, she said i'm hoping maybe you are anemic?

winds up my blood count is beyond perfect. she said your blood is better than mine, all your counts in total cholesterol all of it. she examined me she said it doesn't seem like you have an infection at all from the biopsy yet i see what you mean as far as how you look at fact that yet again you are having yet another period 9 days after last one it seems.

i said ok, so i'm starting to get nervous now because none of this makes any sense to me at all. I said if i had cancer or pre cancerous cells would it show up in cbc count? she said no, not at all. someone can have cancer and the blood count can come bk normal.

so, in total we have done a pelvic exam normal
blood work normal
cervical biopsy which is ok their pre cancerous yet nothing to worry about right now it's still same and that isnt' causing the problem.
we've done urine, normal hpv normal all that stuff.

so, she said well i guess at this point all we can do is wait it out till we get the results in from the biopsy next week.

i said ok, if it's that what do we do? she said if it's cancer or pre cancerous we have to do a hysterectomy and/ possible chemo depending on what stage we are in. i said ok i figured that.

i said if it comes back clean i just continue on this way in pain, let's just say being intimate also hurts and period every ten days?

she saidwell i just dont' know.

round and round we go!!

any thoughts? yea i know i gotta wait for biopsy results but this is getting stupid now. i said could it be stress? she said no that wouldn't make it come every two weeks or less and give pain at the same time.

so i said well tmrw i have a long day ahead of me, do i go ahead with-the day or call in again? i said it's a matter of having to walk with- or shall i say prepared for the day if you know what i mean to get thru not to mention fact im exhausted. she said well what your going thru shouldnt' of happened id' say go to work unless you want to take the day.

 

[klmno]

Wow- that's really frightening Jen. All I can think of is that if the bopisy doesn't reveal any answers, I think I would go to a university medical hospital and get a team on this- maybe they can give more thorough tests- at least it would get a new pair of eyes on it who might have more innovative ideas. I'm sorry you are going thru this.

 

[hearts and roses]

{{{Jen}}} It stinks waiting for the biopsy, I know.

Some tips:

In the meantime, no sex, load up on advil and perhaps buy a few of those instant heat pad things they sell that you can stick to your belly? You could also buy an AC adaptor for your cigarette lighter and plus in your heating pad while you're driving. Buy a pair of Crocs - they are the most supportive and comfortable shoe if you're on your feet a lot. When you're sitting, put your feet up so they take the pressure off your abdomen.

Did your DR do a pregnancy test on you? Any chance you could have an atopic pregnancy? Or, a stillborn baby? It may seem like too obvious an answer, but figured I'd throw it out there because so many of the symptoms can be anything. Hugs~

 

[Jena]

hi

thanks! yea it's weird. no, no baby in there lol, plus boyfriend is fixed

its been giong on for a year now to be honest, exactly started around feb last year with this. we even tried using antibiotics at one poiint thinking maybe it's just an infection thing. nope. same.

so, now we just have to wait for the results to come back she said she'll call as soon as she gets them in. i'm hoping it shows something even if minor i'm hoping that would be great to fix it.

so, i guess i pile up tmrw and go to work all day long? i don't feel up to it, i ususally shove on no matter what's going on, yet the thought of spending day in truck driving to queens to drop difficult child than meetings all day and appointments thru the night yuck.

 

[klmno]

fish around on here and see if there's a place to email and ask a dr what they think you can try or test....it's worth a shot. LOL!

http://health.discovery.com/fansites/mystery-diagnosis/mystery-diagnosis.html

There were a couple of others on the board that I thought about when I watched this show, too.

 

[Shari]

After both my kids were born, I had continuous bleeding for months/years. And pain. It stopped after 15 months when easy child 1 was born. When it happened again after difficult child 2, I said enough. 2+ years later, I was moments away from a hysterectomy when my doctor suggested continuous birth control. He put me on a bcp that uses one hormone and i take it every day, skipping the 7 placebos in each pack and starting another pack instead. it took a few months, but it worked, and i haven't had a period or bleeding or much pain since.

 

[Jena]

klmno thanks!

shari are you kidding?? no one did a biopsy for you at that point? i'm shocked. i said hormonal? she said no. apparentley she tested my urine and blood. i can't do birth control i'm too old now and yup i still smoke.

my grandmother had endometrial cancer so i guess she's thinking hmmm

 

[mstang67chic]

Just a thought here but has anyone mentioned endometriosis? For a technical diagnosis they have to go in laproscopicly (I know I really butchered that spelling) but it can cause at least some of your symptoms, especially if it is at a high stage. If that's the case there is no real "cure" but bc pills can do wonders.

HUGS...hope you find answers.

 

[Jena]

ok that's interesting, thanks. i just looked it up after i read what you wrote. that seems to fit somewhat. yet they say it's detectable through other means such as pelvic, etc. which she didn't try. odd thing is my periods arent' that painful, it's more of the pain inbetween them and stuff. def worth bringing up to dr.

in all honesty she should be thinking of this, not me or you lol. i think after next week i'm going to someone diff once results are in

 

[rejectedmom]

I hope the Biopsey is normal and you are not dealing with that. I had the same problem as you and I ended up having a hysterectomy whith pathology. I was diagnosis with fibroids. I do not regret the operation but it did lead to other problems.
Some other things to consider if your biopsey is negative are having your thyroid tested. Hypothyroidism can cause menstral problems along with other symptoms. Also floride toxicity has many of the same symptoms as Hypothyroidism including menstral difficulties. -RM

 

[Shari]

I have endo, and it can only truly be confirmed by a lap. Even a pelvic and sonograms can miss it. I just assumed with all that's been done, that had been ruled out, but that's why I take the BCP. It made all the difference in the world. The bad thing is, if its endo, a hyst won't always help...it can leave behind endometrial lining which will still react to your monthly hormone fluctuations unless they take everything....then you're in a surgically induced menopause, with its own set of glorious problems...so...anyway, I digress...I'd ask about endo and maybe consider stop smoking! lol

And, after the BCP controlled the bleeding, I had my lap done, where they burnt off the rogue endo tissue, and I was 100% pain free for 4 years. Now it comes and goes occassionally but is very, very mild.

 

[susiestar]

Jen,

I have a friend from high school who had horrific periods since the very first one. She apparently had endometriosis before age 10 - bad. She hurt all the time, but esp during periods. Websites that say that endo can be diagnosis by a pelvic or sonogram are partially correct. Endo CAN be found that way, but is frequently missed. Laproscopic exam is the only definitive way that does not include hysterectomy. Of course they can find it if they do the hyster.

I am almost wondering if these fevers are part of lupus or some other disorder in addition to endo. You might research "fever of unknown origin" on google or some other search engine. A lady who was in our chronic pain/lupus support group had a horrible time with FUO (fever of unknown origin - her acronym, not a formal one to my knowledge) that stemmed from either her lupus, fibromyalgia or endo. (WOW! I just now read the wikipedia page and apparently FUO is a widely used acronym, I had no idea!)

Not sure you will find any help with the research, but it shouldn't help to check.

I hope you feel better soon - very soon! Keep calling the doctor office about your biopsy results.

(oh, I am not saying YOU have fibro, just that the friend had those 3 illnesses. FUO can be a part of lupus, to my knowledge).

I used the yahoo! search on my toolbar to come up with this list of articles/sites on FUO: http://search.yahoo.com/search?fr=ytff1-sunm&p=fever%20of%20unknown%20origin&ei=UTF-8&type=.

I thought it might be easier for you if all you had to do was click. I know my other friend had such overload on her brain, in part because the fevers and pain.

Gentle hugs!

 

[eekysign]

I also have a friend who's been on birth control since she was a little girl, due to waaay early-onset endometriosis. She hasn't had a period since she started at age 10---if she goes off the BCPs, massive bleeding and pain.

I'm really surprised they didn't rule out endo and fibroids right off the bat. Those are some of the more common causes of bleeding issues. Hmm. Hopefully they're taking care of it, just doing things in a different order because of things we on the board can't know.

 

[Jena]

hi guys thanks.

i have no clue what's going on and the thing is the actual periods aren't that bad, since we're all being so blunt lol...... i'll just spill, i'Tourette's Syndrome the continuous bleeding that's getting me and the pain inbetween the periods. now i'm on day 6 of it and the more i walk the worse it gets. if i'm off my feet than i'm better once i'm on them it's worse.

work's driving me batty, all day long phone calls and stuff. it's ridiculous it really is.

i mentioned endometrosis can't spell to the dr she said she didn't think that was it based on the other tests and how i seem on exam. who knows. guess i'll just have to wait till i get the biopsy results. soemthings' def. going on, i just don't know what. at least i'm searching for answers now and have the insurance to do so. thank goodness unless my job decides to tank me over this.

since she did the biopsy it's been pretty bad. i almost wish i hadn't gotten it done to be honest.

lupus? i think that shows up in your blood count the cbc that is, it's shows a differential in the white cell count. bloods perfect says the dr. who knows.......

 

[Jena]

thyroid tested? wow. see i knew if i asked you guys youd bounce ideas out better than my dr. i have such a bad lower back ache also with it all.

 

[Shari]

When my endo was not controlled (basically I'm in a "chemical induced menopause right now), I literally never stopped bleeding, and the pain got increasingly worse.

The more you bleed, the more rogue tissue is created where it shouldn't be, then it propogates more bleeding, more pain, and yet even more tissue where it shouldn't be...its a horrid cycle (no pun intended) For me, anything that initially started the bleeding set the cycle off again (childbirth, d&c, IUD insertion, anything, once it starts, its he!! to stop)

I wasn't aware that lupus could be diagnosed with bloodwork. I thought it was like fibro and was diagnosis'ed by process of elimination. Learn something new everyday.

 

[Jena]

shari it sounds alot like what's going on with-me and ill def take that over cancer. it's like since biopsy same thing triggered another bad one. how did you function like that, weren't you exhausted?

my mom was diagnosis with lupus a few weeks ago, that's how i learned it was done by blood count.

 

[mom_to_3]

Jena, take a look at the symptoms for Adenomyosis. I had troubles too and it was not discovered until AFTER my hysterectomy (pathology found it) what was causing my pain. The adenomyosis and fibroids were responsible and the hysterectomy took care of that for me. I hope you find answers, it's no fun for sure.

 

[susiestar]

I hate to tell you, but lupus is NOT diagnosis'd by blood work alone. There are some blood tests than can HELP indicate lupus, but it is very easy to miss this diagnosis. If your doctor told you that your cbc did not indicate lupus, and so you couldn't have it, then she is off her rocker.

Here is part of what the Mayo Clinic has to say about diagnosis'ing lupus:

American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have four of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:

• Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
• Scaly rash, called a discoid rash, which appears as raised, scaly patches
• Sun-related rash, which appears after exposure to sunlight
• Mouth sores, which are usually painless
• Joint pain and swelling that occurs in two or more joints
• Swelling of the linings around the lungs or the heart
• Kidney disease
• A neurological disorder, such as seizures or psychosis
• Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
• Positive anti-nuclear antibody tests, which indicate that you may have an autoimmune disease
• Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

By looking at this you can see what all they need to do to get a lupus diagnosis.

Here is the link to the Mayo article I used: http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=tests-and-diagnosis


I really hope you feel better soon.

 

[ctmom05]

Jen,

As a three time survivor, I can say that the worst part is the not knowing......and that applies no matter what the medical issue is. It's harder than heck not to dwell on the what-ifs.

Putting activities on hold won't make the time go any faster and you will get even more worked up. Do the best you can to keep busy with the things that you would normally be doing while you are waiting for more information, that will help keep your mind occupied.

We're all thinking of you, Jen.....