Damn, girl! I am so sorry to hear this.

Kinda makes me grateful I am so scared of messing with Mother Nature.

Best wishes and healing vibes coming your way.

G

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It's a little like wrestling a gorilla.........you don't stop when you're tired.........you stop when the gorilla is tired.

Thanks for sharing your story. Sorry you're missing TTT, but it sounds like you're on the mend which is the only really important thing. This is a good reminder that all medication should be taken carefully and only after taking into consideration any potential side effects.

I'm going to try to be at TTT again in 2009. You going back?

yep.. very uncharacteristic of me to do something like that.

Been there, done that. Sorry to hear you're going through it. When it happened to me, they did all kinds of testing to find out why it did. The doc I had at the time was a freaking MORON and misdiagnosed my red, hot, swollen calf several times. By the time it had grown and gone all the way up through my groin, it broke off and went to my lungs. Excruitiating back pain and inability to breathe and I finally demanded someone see me ASAP. Damn lucky I'm still alive. Thank God! Anyway, they came back with some test results that may have indicated a slight increase towards a clot but I'm convinced, especially since I never had any problems before or since (knock on wood) that it was the bc pill. My gyn (new one) thinks the same thing.

Please do what your doc says and follow the treatment plan. Don't be in a rush to get back to "normal". A PE is a pretty significant event. Be glad they found it before anything worse happened.

I was in the hospital for a week. Since I had multiple PEs, and wasn't in "race shape" when it happened, it took me a while to get back to normal. And, it took a while for the clot in my leg to dissolve b/c it had grown so much.

Coumadin is a major PITA. Just keep that in mind. It takes a while to get it stabilized. Watch your diet. You may feel fatigued at first on it--that could also be a symptom of the PE. It does get better in time. And, hopefully, you won't be on it for very long.

Good luck!

Sounds like you went through a lot of crap!... dang

Also...

What I'm trying to say with my e-mail is READ THE "WARNING SIGNALS" and listen to your body. And stupid me for messing with Mother Nature !!

Not stupid. You can't judge yourself based on what you know now........you made decisions based on what you knew then and learned from what happened.

Don't beat yourself up. It's counterproductive........yes, I have been learning this myself.......the hard way, as usual.

G

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It's a little like wrestling a gorilla.........you don't stop when you're tired.........you stop when the gorilla is tired.

Yep.... 2009..and on !!

Oh no! Thank goodness you figured it out! I'm sorry about the cumadin and missing the TTT, but hope you will make a full recovery and fast.. so scary. Do you have to be on the cumadin for a long time?



I had this done: http://novasure.com/ 20 min in office procedure, no flow ever again, for anyone looking for an alternative that might be safer.

Cheryl I'm so sorry about your PE. I hope you have a speedy recovery. Thanks for this post. I was just talking to my girlfriend today and told her I was really thinking about going on the pill. I don't mind the flow so much. It's the freaking menopausal symptoms that I hate. After reading your post I guess I'll live with insomnia , night sweats and crazy mood swings. Patty

They've said 3 to 6 months... Guess it's one of those things they just keep testing your blood to figure things out.

Yep, lots of blood tests. At first, you may have to go once a week or so. After about a month, it should stabilize, especially if you pay attention to your diet (lots of things with Vitamin K in them will throw it off). Hopefully, you'll get to testing about once a month then and then it's not such a huge pain. Be careful with any pain meds other than tylenol too.

Good luck! Take care of yourself!

And, yes, ladies, be careful with this stuff!

I wanted to pm you but it says I can't .... I have a stupid question not sure I want it posted ..lol

Cheryl,
I'm so sorry about the PE and hope that you are on the road to recovery. I will miss seeing you out at TTT but there is always next year. Take care of yourself.

Chris

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2015 Season: American TTT
Ironman Louisville.

Been there, done that as well. Several years ago, I ended up with a massive blood clot (groin to knee) and multiple pulmonary emboli--blood clots all over my lungs. One week in the hospital and over a year on coumadin. No risk factors other than birth control pills, perhaps combined with dehydration. It was definitely a major bummer all the way around. At that point, I passed the mantle of birth control to my husband. We stalled on that vasectomy just a little too long.

I'm convinced that women athletes are at a much higher risk for oral contraceptive-related clotting. I think the combination of low heart rate with the increased potential for clotting caused by both oral contraceptives and dehydration is a major high risk situation being overlooked by the medical community. I personally know five women athletes who have had a dvt or pe episode related to bc pills. Not "know of" five women, but actually know these women. When the overall blood clot rate among birth control pill users is given as 1 or 2 in 10,000, it seems a little odd to me that the rate is so much higher in my little world. I sure would like to see a study done. Here's a prominent woman athlete who recently had a horrible dvt episode, again related to bc pills: Kikkan Randall

This really is not something to ignore. If you need to use bc pills, try to at least use the ones that are considered safer. There is more clotting with pills that use the progestogens desogestrel and gestodone vs. levonorgestrel, norithisterone, and ethynodiol. The Ortho Evra patch is known to have a higher clotting risk. Like I said, I don't think doctors have made the link, so it falls on us to do the best research we can to determine what's safe for us as women athletes. Unfortunately, there is often no good way of knowing.

you are freaking kidding me! so sorry to hear about this and what you are going through! i really hope they are going to resolve this for you???!

In my haste to get on my "we're being neglected by the medical community" soapbox and then run off to a meeting, I neglected to send my best wishes to you. I know it's all horrible, but be thankful you were in good physical condition, otherwise your lungs may have completely given out. Lung function will come back, gradually, although you will undoubtedly be frustrated along the way. Right when I was at my highest level of feeling sorry for myself, a local 15 year old girl dropped dead on her way to school from a pulmonary embolism. That really put things into perspective for me, although it didn't necessarily stop me from feeling sorry for myself. It will get better, but it will take time. There's no magic bullet to this. Take care of yourself!!

Woah: "I start having problems with breathing, I don't feel like I'm getting enough oxygen, My running is not fun, the little races I was doing were poor performances."

What else did you notice? Chest tightness? Occasional lower chest pain? How did you feel on bike vs. swim vs. run? The reason I ask is that I was just trying to run at altitude recently (not that high even 7000') and I couldn't breathe. hands and ankles became swollen too. Heck, over the last few months, running has become harder and harder, and I'm at sea level. I've been on the pill since 16. Wonder how I ask my GP about this.... hmmm

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"How bad could it be?" - SimpleS

Wow-glad to hear you're okay!

I took the pill to control period for about 4 years and stopped last summer bc I figured the risk wasn't worth it. It was sort of a random decision based on health insurance and age, but SO glad now I did.

There should be more info out there about this stuff-does sound like maybe it affects athletes more.

Em

Thanks everyone for the well wishes and info !!
HeidiC... your "soap box" is very appreciated, that's what I was hoping to bring
to the Forum. Information from people that have been there/done that and can
pass it on.

I wear a HR monitor.... what I noticed is my heart rate wasn't elevated but I felt my
effert was. Like when I did a few 5k' races, I was racing as hard as I could, HR should
have been in the 170's ...it was in the High 150's and I was working way too hard for it
to only be in the 150's.
Also just little things... I even stuggled to get air if I talked to fast.


What else did you notice?
I never had pain and never made a "noise"

Chest tightness?
Not really ... tightness because I was trying to hard to breath.

Occasional lower chest pain?
No

How did you feel on bike?
The bike I felt the least problem

How did you feel swim?
Swim SUCKED... I was having trouble holding my breath to do flip turns.


If I were you I'd question !!

I'm so glad you're ok!

I gave up on the pill when my doc thought I had a probable DVT after a red-eye the night after a race. She said it wasn't worth the risk, but left the decision up to me. I'm curious to see whether Nuvaring ends up with a lower clot risk. Nuvaring is the cat's pajamas.

Jodi

OMG! That's so funny. That was exactly what I noticed. I was going to put that in my earlier post, but it was already too long ;-). I'm a swimmer so flip turns aren't an issue for me, but I could not make it through a flip turn without feeling like I was going to burst. I couldn't alternate side breathe either. Couldn't hold my breath to take three strokes, and I have a really fast stroke turnover. In spite of my significant dvt, the first symptoms I noticed were the breathing problems, not the leg issues. I guess as athletes we're used to leg pain, but the breathing difficulty was new.

I think the week I was at my worst I was only swimming, so I can't give info about symptoms while running or riding. But I do remember being winded walking up stairs and, like you said about talking too fast, I remember having to interrupt a phone conversation to catch my breath. My resting pulse was high for me (low 70s), even though the hospital nurses kept blowing that off ("that's normal"). I don't remember chest pain before I was diagnosed, but, geez, I had incredibly horrible middle back pain while I was in the hospital. It was excruciating!!

Here's a link to an article about a female college runner who had a PE and her symptoms. It's old--they use more sophisticated imaging now (CT scan). AndyPants, if it feels unusual to you, I would have it checked out.

Just something funny when I was in the Hospital... hooked up to the machines...
I kept setting off the alarm. My HR was usually 42-44 but when it went to
38 the alarm would go off. The nurses eventually realized to just ignore it.

So in 17 years in medicine, I have only seen 2 DVTs from birth control pills, both this year - one in a marathon runner.
I think traveling to races poses a higher risk than racing and training - flying is a known risk factor for DVT. Being over 30 is a higher risk factor for DVT. Smoking is a risk factor for DVT.
The patch's risk is 1 in 10,000 higher than the pill risk. The second generation progestins have NOT in the end shown to be riskier than the older progestins.
Nuvaring would theoretically be a lower risk as the blood levels of hormones are lower.

I am really sorry you are going through this and that others on this forum have had to deal with this as well.

I just don't want to see women suddenly be afraid to be on OCs when the risk is astronomically small.

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cat
Sponsored by Suntheanine, Lycored and Celadrin
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OMG that's pretty bang on, esp the HR at running effort vs. RPE. I have a hard time cracking 145bpm but the RPE is waaaay too high. Hmm. Will mention it to GP.

AP

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"How bad could it be?" - SimpleS

I don't think anyone is trying to scare women away from BC pills, but I do think we as patients tend to be under-informed about the risks. Perhaps you've only seen two women in your practice with oral contraceptive-related blood clots, but in less than one day, we had three women post here with oc-related blood clots. Like I said in an earlier post, I personally know of five other women in the same situation, far exceeding the 1 in 10000 figure we're given. Add in some prominent women athletes who have publicly acknowledged oc-related blood clots, for example
Kikkan Randall, first American woman to win a XC World Cup race
Kim Smith, New Zealand distance runner record holder
Shawtinice Polk, Univ. of Ariz. basketball player who died of PE at age 22
a pro woman cyclist whose name I can't recall, also a woman pro triathlete

and it starts looking maybe a little less unusual. Still very rare, obviously, but maybe not as rare as it seems. Really, who knows what the rate is? Is their a reliable repository of these types of events? No. Yes, there are studies, but how comprehensive are they? Do they consider all possible risk groups? Have they studied women who might be at higher risk due to things like dehydration, frequent travel, low heart rate which allows blood to pool, etc., and if so, have they quantified those risk variables? We know that oral estrogen is related to hypercoagulability, we know that dehydration is related to hypercoagulability, we know that restricted movement (as in travel) is related to hypercoagulability. But do we know the combined effects? Is there no combined effect? Is it additive? Is it multiplicative? I don't think we know. I think a subgroup of highly trained women endurance athletes in any large-scale study would be so small as to never reach statistical significance. Given the potentially serious consequences (i.e., death), in the absence of comprehensive data, I think it's important that women be aware that there might be a few more things to think about. Don't flush your BC pills down the toilet, but don't ignore a funny pain in your leg that won't go away, or an odd inability to suck in enough air. If you're on BC pills, be particularly careful about hopping in your car for a 5 hour drive home after a race. If you don't need to be on the pill, don't be on it. Don't assume your doctor knows all this.

Not to be argumentative or anything. I guess I'm from the era that watched women's health issues be completely ignored and I clearly haven't recovered!

Great points. Thank god the BF is getting that vasectomy next month ;-) AP

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"How bad could it be?" - SimpleS

email me at: amccale at yahoo dot com

Have to agree. I don't think the goal is to scare women away from using bc pills but I'm not sure I would call the risk "astronomically small". And, regardless, women using the bc pill should be informed by their doctors and be well aware of the risk and what symptoms to look for. (And hope that their doctors aren't raging idiots like in my case but....). I think a little more information is warranted overall. Had I known the symptoms, there is no way in hell I'd have let things go on as long as they did. And, I think as athletes, we are used to things hurting here and there from time to time, things feeling a little "off", etc. that might go overlooked at times.

Thanks for all the posts everyone, although I'm starting to freak out a little. I was on Yasmin for a little over a year and just went off it (and any BC) last month. I have been having the same symptoms since Jan-- major problem runningm, biking not so much, swimming's been okay, but I also haven't been swimming too much so maybe I haven't noticed a difference. Anyways, I thought I had EIB/exercise-induced asthma, so went and saw an asthma, allergy, & respiratory specialist on Monday. I did a bunch of pulmonary function tests (PFT) before running, after running, before an inhaler, after an inhaler etc etc. Every PFT result was the same at around 90something percent. So I don't have asthma or EIB and the doctor couldn't figure out what was wrong with me. Just scheduled an appt w/ a pulmonary specialist he referred for Wednesday to check everything out.

Oh and Andypants, did you guys have any PFTs done, and if so, how were they?

Thanks again for all the info!

Yeah, I'm in the same boat as you...Been on the pill for more than 14 years and I am having lots of new asthma issues this season! EEEP!

I just looked at my pill and its the hormones ethinyl estradiol and norethindrone acetate. I take Estrostep Fe.

I had a cramp in my ribs under my right breast that wouldnt go away last night. It finally went away, but was painful and unusual.

We will see how the swim workout goes tonight. If theres any similar issues to the ones listed here I am on the phone tomorrow morning!

Thanks for bringing up this topic!

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Jeanne Roth
Team Timex 2007/2008
http://jeannejeannie.blogspot.com/

I haven't had a PFT or a VO2 max test since early 2005. I too always scored pretty high. But it's probably a good idea. First thing is to get into my GP and ask for tests on lungs. I know I don't have any exercise induced asthma as I don't get worse after the exercise ends (typical symptom of EIA).

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"How bad could it be?" - SimpleS

Add me to the list. Was on OC for 14 years with no issues and after having knee surgery in the summer of 2005 I ended up with a massive DVT (ankle to thigh) that required more than a year of Coumadin therapy plus weeks of Lovenox shots in the stomach and multiple trips per week to have my PT/INR levels checked.

My regular doctor definitely related it back to the OC and took me off of them immediately. My knee surgeon never once mentioned the risk of a blood clot so I was flying blind so to speak.

It's a very serious thing and one that I think women especially athletes should be aware of. No reason to be scared of OC just know the risks and do what you can to mitigate them.

I'm really pleased that I had a supportive husband who went in following the DVT and took care of that problem and who also rode with me while i was training for a 1/2 IM to make sure I didn't fall or get hit by a car since the risk of bleeding out from an injury while on Coumadin was very high.

Glad to hear you came through ok!

After my recent bout in the ER, I know my PFT scored pretty high. My d-dimer came back high, so I'll be following up with Internal Medicine shortly. Am also going off the pill in another month (after the BF's snip job). AP

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"How bad could it be?" - SimpleS

Sorry to hear about your d-dimer results Andypants (and everyone else that had/has blood clots) , hope you get it all figured out soon and are on the road to recovery!

Saw the doctor last week and he did a bunch of blood panels (including d-dimer, since I told him I was freaking out about possibly having a blood clot due to BCPs) and xrays. Everything came back okay, except I'm anemic-- my hemoglobin and hemocrit are very low, apparently so much so that I would be rejected as a blood donor. I had thought that the dizziness/getting lightheadedness when standing up was from the antibiotic I am (was) taking, and the fatigue was from my allergy meds... the only time I had trouble taking in enough air was during running, but this all makes sense now. So after more iron studies on my blood, and loads of iron supplements, the doc thinks I should be fine once my blood levels get up to normal. Regardless, I'm off the BCPs.

Just wanted to say thanks again for the post... I'd probably still be sitting around being depressed about my ever-increasing mile time.

:)

Hey that's great that you found out about your iron levels... keep us up to date on your improvements. You get running girl! ;-) AP

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"How bad could it be?" - SimpleS

I would think it's far more likely that the knee surgery caused the DVT than the OC. I'm surprised the doc never mentioned it as a risk, blood clots are a common risk after any surgery and are pretty common following ortho surgeries. In fact, many people are prescribed Coumadin as part of the standard treatment following a major ortho surgery to prevent clots.

I tend to agree with CatIsTriing that the risk is far higher that you'll get a DVT after travelling long distances to get to/from your races than OC. But maybe it's because I'm headed into the medical profession and I'm biased...

Really, I'm not arguing that oral contraceptives are more dangerous than traveling long distances. I would have to guess, though, that the combination of factors produces a higher risk than any single factor alone. Risk factors rarely work in isolation. Travel, dehydration, low heart rates, and surgery are all clot risks, which is why you read about endurance athletes, male and female, who have had DVT and/or PE episodes. My theory is that birth control pills, known to increase coagulability, just add a little more punch to the situation.

BTW, Kikkan Randall, the world class XC skier who recently had a scary clot episode, was found to have Factor V Leiden, a genetic disorder that increases the risk of clots. She probably shouldn't have been using hormonal birth control (NuvaRing, in this case), but testing for Factor V Leiden isn't routinely done until after there is a clot. Plus, she has something I've never heard of--May-Thurner Syndrome, which is described as a rare syndrome that occurs in young (rules me out) athletic women in which the left iliac vein is compressed by the artery crossing over it, thereby impeding blood flow. So, given all this, plus a high hematocrit, lots of travel, lots of intense exercise, and the occasional fall, the use of hormonal contraception was probably a really bad idea. This is not intended as a slam against the medical community (I LOVE my doctors!), but review of those factors does not routinely happen before birth control prescriptions are handed out. Doctors don't think about it, and we don't think about it. I certainly never did.

I might be having knee surgery, cross your fingers not, and I'm curious as to whether I should go off the BC pill for a month prior to surgery to lesson the possibility of a clot?

Also, a bit of a side track but I didn't want to create a separate post because of the subject, but has anyone every done a tubal ligation or other form on permenant BC? I've been on the pill for 21 years now and don't plan on having kids. I want to get some of the chemicals out of my body and artifical hormones are high on the list.

I'm assuming once I get off the hormones my risk of blot clots reduces, correct?

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Jen

"In order to keep a true perspective on one's importance, everyone should have a dog that worships him and a cat that will ignore him." - Dereke Bruce

More important that post surgery (if you need it) they do something to prevent clots. I don't think it adds appreciable risk on TOP of the surgery - orthopedic surgery is a high risk.....

The IUD has as good or BETTER contraception statistics than tubals, without surgery.....

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cat
Sponsored by Suntheanine, Lycored and Celadrin
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Don't those use hormones? And, since I'm almost 40, does it make sense to use a temporary solution that will come out in a couple years? Tough decision. I know you're not my doc and I don't want to put you on the spot, just curious to get a different perspective.

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Jen

"In order to keep a true perspective on one's importance, everyone should have a dog that worships him and a cat that will ignore him." - Dereke Bruce

copper T has not hormones and lasts 10 years......
even IF you chose the Mirena (progesterone released only in the uterus - no clot risk as that comes from estrogen) it is good for 5 years and when the old one comes out a new one can go in same day.

MUCH less recovery and believe it or not lower pregnancy risk....
I was trained in tubals but don't do them any more....

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cat
Sponsored by Suntheanine, Lycored and Celadrin
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Please, can you tell me, is this a risk, however small, just for BC pills, or is there a risk for taking hormones as well (BIH)?

all estrogens.....

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cat
Sponsored by Suntheanine, Lycored and Celadrin
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I'm not a doctor, but I've worked really closely with an ob/gyn who specializes in hormonal issues and bioidentical meds on exactly this subject. I hit the peri-menopause hormone mess about two years after my dvt/pe, right when my mother had a major stroke resulting in her moving in with us and requiring nearly full-time care, and as my son was hitting the worst of his adolescent years, leaving me pretty out of control. Major mood swings, depression, etc. I went to a specialist ob/gyn because I felt like I had to do something. The research on bioidentical hormones is still emerging, but there is an ongoing study in Europe (the ESTHER study). The preliminary evidence is that transdermal BIH (cream, patches) do NOT increase clot risk, although it's best to be used with micronized progesterone if you still need progesterone. Here's a link to an article. My doc has also given me copies of a couple of other published studies indicating the same thing.

Thanks Heidi, and Cat.
Heidi, can you try posting the link to that article again?
Did you take the hormones, and they help?

I just realized that the link I included was for Medscape, which requires registration (free). Go to medscape.com and register, then the link is http://www.medscape.com/viewarticle/552778. Here's another article.

Keep in mind, though, that I'm not a doctor and Cat is. I'm just repeating my lengthy conversations with my doctor. This type of stuff is pretty much the focus of my doctor's practice, but you should probably talk with your own doctor. The research on bih is in its infancy and it's impossible to know how things will turn out with more comprehensive studies. Before doing anything with me, my doc was very thorough in evaluating if I had any genetic risk factors or other markers that might raise concerns. Every time I see her (thankfully only twice a year now, but more often originally), we draw a minimum of six vials of blood to check everything out.

And, yes, I'm using Vivelle Dot with micronized progesterone (from a reputable compounding pharmacy) and it helps enormously. My mood is better, I'm sleeping at night, hot flashes are controlled, and the angry things my mother says as a result of her dementia don't usually make me cry.

vivelle dot and micronized prog are my favorite combo to use on women.
Basically going all the way back even to when I was in med school, the lore was that transdermals do not increase clot risk because there is no first pass liver effect. However, then the birth control patch should not increase clot risk and it does....

I know about the european data, it is why I AM a fan of HRT (and have always used BIH unless a patient begs me to do something different).....

I would be VERY wary of using any estrogens with a history of DVT (though HRT is much lower doses than OCs).

Without a history of DVT I would not be so worried....

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cat
Sponsored by Suntheanine, Lycored and Celadrin
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Yeah, I'm way not thrilled about using any type of estrogen. But, the stress of having a disabled parent with dementia living with my family and requiring constant care was (is) so overwhelming that my coping truly was stretched to the limit, and the hormone issues were pushing me over the already-thin edge. My GP was less than thrilled, but my ob/gyn has been really thorough in watching for any areas of concern, and I of course become neurotic any time my leg feels funny or I'm having a little trouble getting air. Earlier portions of the ESTHER study indicated that low-dose bioidentical transdermal estrogen doesn't increase clotting even in women with Factor V Leiden, which I don't have, so that makes me feel a little better. I do worry about it, though.

My doctor accounts for the clot risk with the birth control patch as resulting from the high doses of that "synthetic crap." I so want to believe that.

Thanks for the concern.
Heidi