|
Post by JC on Feb 1, 2011 20:56:53 GMT -5
I recently had some blood tests because my doctor suspects that I may have had a small stroke due to an underlying blood disorder. I have tested for a gene mutation called "Factor V Leiden Mutation" which basically means that I am genetically predisposed to forming blood clots and have an increased risk for heart attack, stroke, or pulmonary embolism (clot in lung). The reason I am alarming all of you is because, not only am I at an increased risk of blood clot because of this genetic mutation, but adding the fact that I have been taking birth control has now increased my risk 35 times greater than a normal individual. This genetic mutation is pretty rare, only 3-5% of the popuation has this. This is most common in people of European descent which also makes me worry for all of you because endometriosis affects mostly women of European descent. Although rare, it is very real and being put on birth control could have been life threatening to me. I want to spread the word out to you all because I really don't want to see another person go through this. Not only does this affect our ability to take hormone therapies but pregnancy also increases the risk of blood clots with this genetic blood disorder. This is NOT a routine test that doctors do unless they have a reason to suspect it. My doctor had no idea I had this and I was blindly placed on birth control to treat my endometriosis. In addition, if you have a family history of blood clots I would strongly urge you to talk to your doctor about this before ever considering hormone therapy. As far as pregnancy, many women carry normal pregnancies without complication but at least being aware of this can help your OB monitor your health during pregnancy to lower your risk of getting a blood clot. For more information, here is a pretty good website with some information: ghr.nlm.nih.gov/condition/factor-v-leiden-thrombophiliaI am currently under a doctor's care to figure out how much damage has been done but I am hopeful that I will be ok now that I have stopped taking birth control. I don't have all the answers yet as far as what this means for my future health, but I am so thankful my neurologist caught this before it ended in disaster.
|
|
|
Post by Karen on Feb 1, 2011 21:07:05 GMT -5
Thanks for sharing! I know we've had other members at higher risk for stroke due to BC for various reasons and I think it's important for other women to remember it's a possible side effect. It just shocks me that docs prescribe BC like candy and really minimize the risks, particularly for higher risk women.
I'm glad that you have this info, Jenaya, and are able to potentially avoid any future problems by going off BC!
|
|
|
Post by omaklackey on Feb 1, 2011 21:07:17 GMT -5
Yikes, so what happens with you NOT on birth control though? It was managing your symptoms/endo wasn't it? Are you going to be making a plan for all that now too? And... This is why I have been so freakin annoyed with doctors constantly prescribing medication without knowing what the frick a person has!! So stupid! Rare or not its getting old. I recently got told to take something that has a real chance of messing up my asthma and causing some significant problems and its not a rare thing either, its fairly common. The pharmacist didn't bring it up except I asked and I asked because My husband happened to know. What would have happened if he hadn't known? That's some really scary news Jenaya, I'm glad they figured it out.
|
|
|
Post by JC on Feb 1, 2011 21:12:27 GMT -5
Yes it was treating my endo, very effectively too Now I'm only left with the option of going the natural route. Many women do it so I hope I can have just as much success as they have! I can't ever touch hormone therapy ever again, nor can I touch any medication that even has the slightest risk of blood clotting. I agree with you Karla, I think it's getting old too. These drugs are just dangerous and I'm tired of all of us being put at risk. I'm 28 years old and I live a healthy lifestyle. I shouldn't be worried about having a damn heart attack. It's absolutely maddening.
|
|
|
Post by chicagogal2 on Feb 7, 2011 16:17:56 GMT -5
I'm just getting caught up on the threads - WOW is all I can say. This is so scary and crazy! I wish they could find us a cure for this disease!!!
|
|
|
Post by KSA on Feb 7, 2011 23:07:35 GMT -5
Thanks for posting this Jenaya. You have been thru so much I know its a different route to take but a natural approach can work for endo and a lot of medical issues. You will manage it tho your so intelligent and research everything. If any one can go the natural way it is you. All of you know my crazy history with bc and medications. Most of it is not worth it for me and sounds like A LOT of us have a rare problem or medication reactions. I wish docs would think about all of it but they are so busy pushing the new drugs the reps are bringing in they get caught up in it all. Jenaya I am so glad they caught it and I am sending hugs to you~
|
|
|
Post by JC on Feb 8, 2011 7:18:13 GMT -5
I swear birth control is just dangerous. I was talking to a friend with endo (not a member here) and she wasn't very well informed of the disease and took the advice of her doctor and had children way before she was ever ready with the promise that it would "cure" her. Now she has two children AND endo to deal with because it didn't work. She trusted her doctor to help her and now she has to take care of two children and be in pain. She also took birth control pills and she said they messed her up forever. Another girl spoke to said she now gets panic attacks which is something she never had before taking them. I feel like these doctors just want to give us this stuff and don't really care what it does to us. They have HORRIBLE side effects. I'm so done with pills. I'm SO SO DONE.
I'm frustrated. Can you tell? lol
|
|
|
Post by hellsbells on Feb 8, 2011 12:23:52 GMT -5
Everyone should be screened before being given anything that could possibly cause such serious side effects.
CG - have a look in the natural treatments thread, and there are a few threads on TENS aswell. This thread is more along the lines of the seriousness of risks with medications and jenaya's condition.
|
|
|
Post by katiev on Feb 9, 2011 8:53:20 GMT -5
I just spent 4 hours in emergency bc my docs suspected blood clotting too because I was bruising so easily. All bloodwork came back fine but it makes me wonder if something wasn't missed. My husband thinks its the diet and that perhaps I am missing something in the diet like iron or something but I don't agree. Anyone else bruise easily?
|
|
|
Post by JC on Feb 9, 2011 9:40:27 GMT -5
Funny you mention that because I rarely bruise at all. It practically takes a sledge hammer to get me to bruise. I was actually wondering if my newly diagnosed blood clotting disorder (thrombophilia) was the reason I didn't bruise.
I'm sorry you were in the ER! Where did they suspect you had blood clots? Did they run a D-dimer test? That's usually a really good way to rule out a blood clot. It's a very effective predicting factor in diagnosing blood clots.
Do you know the tests they ran? Or can you get copies? That would be most essential when you follow up with a doctor.
|
|
|
Post by italialynn on Feb 9, 2011 11:10:58 GMT -5
Katie, I know this might not be the right thread for it, but be uber-careful with the diet. I wound up in the ER my first time around on the diet because I'm thallasemic and by cutting out meat, my hemoglobin plummeted to below 8.0. There are just some things some bodies can't do without! I've learned to modify it a bit, and I've done just fine on it this time around.
|
|
|
Post by JC on Feb 9, 2011 11:38:14 GMT -5
You know, I've been having a really hard time with the endo diet. I get extreme amounts of stomach pain right after I eat and it all started when I went on the diet. My thought is that it was probably way too much for my body to handle right now. It was a huge drastic change in my diet and I think my body freaked out. So now I'm back to square one. I'm going to eliminate things slowly, one at a time.
|
|
|
Post by italialynn on Feb 9, 2011 12:48:25 GMT -5
I think that's a great idea. Start out slowly, and just change a few things, and go from there! Your body is going through so much right now, you don't want to add another 'shock' to your system. Just try and eat as healthy as you can and just be sensible with things!!!
|
|
|
Post by katiev on Feb 9, 2011 17:56:04 GMT -5
Thanks Italialynn. I just don't want endo pain. They only ran a blood test t find out about my palettes (whatever that is). They came back fine. They sent me home with the list of the results from the blood test but I have no idea what it all means or what a normal reading would be. I am seeing my fam phys on Tuesday so she can maybe shine the light on it all.
|
|
|
Post by Karen on Feb 9, 2011 18:07:13 GMT -5
Yikes, scary! Hope they're able to figure things out, and perhaps your doc will run a few more tests.
|
|