Stupid genetics...STUPID bleeding!

[wowthisismetoaT]

I will make this as short as I can -

Went to gyn for yearly.  Still having wonky bleeding (which is driving me NUTS...not because I think I am dying but because I can't wear panties without a stupid pantyliner!).  He said he wanted to put me on BCPs.  Asked if I would worry.  I told him, yes, but only because it increases risk of stroke.  He asked for family history.  Great grandpa had stroke at 29 - paralyzed on the left side of his body for the rest of his life (lived to be in his 70's).  Grandma (his daughter) had stroke at 69.  Lived through stroke and died at 71 of a DVT that caused a pulmonary embolism when it broke free and went to her heart.  Loverly, huh?

Doc seemed genuinely concerned.  He told me he needed to run some tests before he would conscent to putting me on BCPs (I took them 6 years ago with no issues for about 3 years).  Anyway, I had no idea he was doing actual GENETIC testing.  What was I THINKING???????  So now, I know I have mutations in Factor II - single G20210 mutation (a biggie for stroke, DVT and pulmonary embolism) and MTHFR (2 copies of the same mutation).

My husband is mad because he thinks that now I am going to go off on genes and get tested for every genetic predisposition possible.  UGH.  NO!  I can't see that.  THIS bothers me enough.

Might I just...

[marc]

I would not have yourself dead and buried quite yet as there are many things you can do to prevent certain things from
occuring no matter what your genetics are. First of all, just because you have a certain gene, does not mean you will get the
associated illness. I have known people who were predisposed to heart disease because of family history and they were monitored
earlier and more often and they have had no problems. I think the key for you will be to do as much as you can for yourself, such
as eating healthy, don't smoke, maybe not go on BCP, take certain preventative vitamin/herb/mineral supplements, get moderate
exercise, go to your physician more often or have other preventative screenings done. In my case, colorectal cancer runs in my
mothers and fathers side of the family, even though my father is now almost 90 and my mother is almost 78. My mothers mother has
colon cancer at 70 and lived to 96, while my fathers father died of it at 49. What you have to remember is that medicine is alot more
advanced than it was when our parents and grandparents were young and that they can do many things for us that were not
available before. I have had colonoscopies and they have all been clear. So remember, genetics does not necessarily mean doom and
gloom. I would not be concerned and try to be as positive as possible.

Marc

[wowthisismetoaT]

Thanks Marc.  I appreciate your thoughts on this.  I know that genetics are always out there and it doesn't mean it WILL happen...just that it could, maybe at a little more likely rate than it could happen to someone else. 

[Kayteecatt]

Genetics can also be seen in a positive way.  Researching my family tree and seeing that no woman in my family has died before the age of 72 (except for one during child birth in the early 1900's) really helped me. 

I'm very interested in the genetic markers.  I think it's just amazing how they've been able to pinpoint things simply from looking at our DNA.  Soon we'll be able to go through a simple blood test and have results and a life time plan within minutes.  I do however worry about designer babies, but there's not much a simple person like myself can do about that.

Anyway, back to what the topic is...lol...the good thing is is that you know about these markers now and so does your doctor.  You can be screened for things and make changes in your lifestyle and still not have any more real risks than someone who doesn't have the markers.  Modern medicine is amazing.

[wowthisismetoaT]

I wish it gave me comfort.    My grandmother's mom died at 49 of asthma, my grandmother died at 71 after having a stroke, she finally died of a pulmonary embolism (which now I know is genetic - I had assumed all along.  Having it proven sucks!)  My dad's mom lived to be 86...but had alzheimers for the last 6 or so years of her life.  In her lifetime, she battled cancer, became diabetic, and then of course, went into the dementia/alzheimers. 

It isn't really the genetics thing that bothers me completely.  Some of it is the bleeding.  My doctor blows it off and I feel like he shouldn't since my tests were done by two other doctors (not my current doctor and not even in the same practice).  He has never asked for the tests, never looked at the biopsy, etc.  It makes me feel like he just thinks I am a woman and have abnormal bleeding.  Whoopee.    And now, the one hope I had to see if this was hormonal is shot because I will obviously not be taking hormones. 

The last few days, I have felt so depressed!  I mean, literally, the most depressed I have felt in a long time.  I feel like this cloud of sadness is hanging over my head all the time - taking away my joy.    It sucks!

[Kayteecatt]

Hmmmm...perhaps seeking a 2nd opinion from a female gyno would be a good idea. 

[wowthisismetoaT]

I agree...I am just tired of "doctor hopping."    I have seen 3 - all of them say there is nothing wrong.  Well, I take that back, the first one said I "might" have a polyp and wanted to jump to surgery to remove it "if he could find it."  I didn't trust him as far as I could throw him so I got a second opinion.  That doc was great.  He did the biopsy and told me that if I had a polyp that small, it wouldn't be causing the bleeding anyway. 

I am just so tired of going to doctors I could scream.  I am tired of being scared, of worrying about everything, of bleeding when I shouldn't, of doctors not taking me seriously when I tell them what is going on.  URGH.  I just want to scream and if I thought it would make things better, I would.   

[Kayteecatt]

I understand, but I really have a problem with personally seeing a man about a female issue.  They can't possibly really understand you know...lol...and for you men here who might read this and say "accept the diagnosis" I will only say this much: Imagine having an intestinal problem, the kind where you never know when you might have an "accident".... imagine trying to live your life not knowing when you're going to soil your pants.  That's like breakthrough bleeding.

Now, go ahead and scream.  It won't make the probs go away, but it will make you feel better for about 5 minutes.  I can't even tell you how many times I've done that.

I really do suggest that you call around and find a female doc that has great office staff.  Usually the best docs have the best staff, I find that to be odd, but true.  When you go in, tell her about the other docs you've seen and how they don't seem to think the breakthrough bleeding is a big deal.  Then tell her how it's impacting your life.  I hate the week when I know it's going to happen, I would go nuts if it just decided to pop up on it's own every once in awhile.

[AnxiouSteve]

What you have to remember is that medicine is alot more
advanced than it was when our parents and grandparents were young and that they can do many things for us that were not
available before.

For what it's worth, there is a new stem cell treatment in trials which aims to restore function to stroke victims.