It’s been almost six months since I wrote to you all about my blood clot experience, and, let me tell you, has it been rough. I’ve gone through a lot of snags that I didn’t expect, but then again I didn’t expect to get a clot either.
I’ve spent the first half of 2009 looking like a heroin addict from all the blood tests I’ve gotten and a pill-poppin’ animal (thanks, Lil Wayne) from all the medications I’m taking. I can’t even count how many times I’ve told the story of what happened and answered countless questions. I particularly love the, “Aren’t you young?” question.
Yes, I’m young.
Does it mean I’m invincible? No.
The first few months were very difficult for me because I was still adjusting to the medication and trying to process the fact that I almost died. Coumadin, or Warfarin, is a blood thinner. I quickly found out that being on blood thinners makes you cold. Almost all the time. So walking to class was hard because I was freezing my little butt off. And don’t even try me on going to parties at night. Since my clot was bigger, it took a long time for it to disappear, which made it hard for me to breathe a lot of the time. Long walks across campus got me winded, and I couldn’t exercise. Pretty much, my whole love for being fit and athletic went out the window.
Along with my lack of exercise, my love for healthy foods like salad, broccoli, asparagus, basically anything green (yeah, kiwi too), was gone. Since foods that are green are rich in vitamin K, a blood thickening agent, I couldn’t eat them unless I did it consistently. I decided it was better not to eat them at all because my blood level was so hard to regulate in the first place.
While on Coumadin, they test your INR (international normalized ratio), which is a fancy way of telling how thick or thin your blood is. The margin is very small, and because I’m so young it made it much harder to get my blood to fall in the range and stay there. While the “average” person with a blood clot takes a few weeks to regulate, it took me about 4 months. I was getting blood tests two or three times a WEEK instead of once a month.
I’ve encountered several issues during this whole ordeal. I can’t be on the Pill ever again, which means I have to be extra careful (and, thankfully, my boyfriend has been great about that). I’m currently debating my other birth control options. The Depo-Provera shot doesn’t have estrogen in it, but it still carries a slight risk for blood clots. I’m too young for an IUD, so I’m pretty much stuck with the shot or using a diaphragm or condoms.
Another issue is that I get sick… a lot. I’m prone to frequent bladder infections, colds and flu-type illnesses, and I tend to get migraines and headaches frequently. Unfortunately, because meds affect the blood thinners, I can’t take anything. Think about trying to endure the flu without meds. Welcome to my clotted life.
In thirteen days I will be of Coumadin and I am excited to celebrate with a salad and margaritas. Finally, I’ll be able to get back to some sort of normal life with vegetables and alcohol! Not to mention I’ll have the tolerance of a five year old, and that is awesome. I’m looking forward to not getting goosebumps when it’s 60 degrees outside and being able to walk around without feelings like I ran up ten flights of stairs. I can’t wait to run into stuff and not immediately bruise, and for my veins to stop looking like I’ve been shooting up in some back alley on campus.
I can joke about the situation now having lived it, but I seriously want every single reader to know how serious a situation this is. It can happen to anyone on birth control, especially you girls who like to light up. Whether you smoke like a chimney or you “socially” smoke (“I’m so drunk I need a cigarette”), it increases your risk for a clot. I was lucky; had I not gone to the hospital or if I had been an hour late, I’d be dead.
Birth control has serious side effects like blood clots, strokes, and heart attacks. Take the risks seriously and pay attention to your body!
Chelsy says:
Tue, 9th Jun 20095:42 pm
For the girls on the pill: taking baby aspirins everyday will help lower your risks of strokes or blood clots.
My sister was 21 and had a stroke due to birth control. It really can happen to anyone.
Rose says:
Tue, 9th Jun 20097:19 pm
Hi, I was just wondering if you were a smoker or had any underlying medical problems prior to the blood clot. I’d really like to know just because I’m on the pill…
Thanks says:
Tue, 9th Jun 20097:35 pm
Thanks for posting the update. Hope you feel a lot better soon!
Erin says:
Tue, 9th Jun 20097:45 pm
It’s amazing that it happens to a small percent. I was switched to a generic birth control because it was cheaper, after 3 months I was dizzy, moody, angry, always tired, my emotions were out of control I instigated fights with my partner and seriously hurt his feelings, I felt like I wanted to rip my skin off with the sharpest knife, when I didn’t feel like that I felt like my skin was too tight and I was literally going insane, I cried everyday for no reason and wanted to kill myself. I ignored the warning on the pills so I could have sex, eventually after a complete melt down I was switched back to Ortho Trycline Lo, I have never felt anything like that since. Sadly my medical provider didn’t take me seriously, she attributed it to me being in a bad relationship, even my partner realized I need medical attention, she thought I was making it up and said that I should be fine if I stayed on it. My partner and I have been together 3 years, we have no problems so it was not a bad relationship at home with him. Medications like this can cause serious problems blood clots are among the worst. I can’t imagine what you went through, I hope you recover fully and never have any problems like this again.
Margo says:
Tue, 9th Jun 20097:55 pm
I have an IUD (the copper one, I hate hormones) and I’m only 20. Actually, I got it when I was 19. No one is ‘too young’ for the IUD, although it is slightly more painful for women who have never given birth. That depends a lot on pain tolerance of course, too, and although it wasn’t the most fun I’ve had, I wasn’t crying about it either. But really, just go to a good hospital, with experienced doctors, get yourself some pain meds for the first couple days after (ibuprofen is fine, if you can’t stand pain, maybe something stronger) and, voila, birth control that lasts for 10 years!
Just want you to keep in mind all your options
Molly says:
Tue, 9th Jun 20098:16 pm
I got my iud about 6 months ago, and I’m 23, no kids. I had awful cramps (tylenol 3 couldn’t even dull the pain) for the first 2 months, until I started taking fish oil supplements. Sounds crazy, I know. But fish oil is proven to help reduce the pain of cramps and I KNEW when I had forgotten to take them, because the cramping started again almost immediately. If you get an iud, consider taking it. You can stop taking them after the cramping stops, too. I’ve been off of the supplements for like2 months.
Caitlin-University of Alabama says:
Tue, 9th Jun 20098:17 pm
Rose- I did not have any underlying heath problems, nor was I a smoker. Now when I say that, I mean I didn’t have more than 2 or 3 cigarettes a week. I did socially smoke on occasion, but my doctors told me that the amount I did would not have effected me to the point of a clot. Plus, the side effects they tell you say that it effects women over 30, not less than that. The last time I had smoked before my clot was at least 2 months prior. So no, I was not a “smoker”. But I also have many friends that chain smoke and are on the pill and are fine. I’m trying to get them to quit.
Margo-I did try to get an IUD. I was actually at my gyno a month or two ago, and it turns out I am too small. I have a very tiny frame and very tiny uterus, so she couldn’t put one in.
I am considering the Depo Provera shot more and more everyday. If I decide to get it, I won’t for a few months probably. It’s just a serious situation.
Please stay updated with this. I’m starting an awareness fund, and I would love for everyone to be informed.
Rozy says:
Tue, 9th Jun 20098:54 pm
@Rose “Sadly my medical provider didn’t take me seriously, she attributed it to me being in a bad relationship, even my partner realized I need medical attention, she thought I was making it up and said that I should be fine if I stayed on it.”
My medical provider dismissed me too when I told her of the severe emotional issues I suffered the first time I went on the pill, and didn’t realize until AFTER I’d stopped taking them. Now I’m on Ortho Tri-Cyclen Lo again and I don’t feel nearly as terrible. I let my body adjust to the stuff for a full three months, and I feel pretty good otherwise. I just wish providers took our mental anguishes a bit more seriously and don’t just attribute them to “bad relationships” and all that. :/
I am definitely considering getting an IUD because it just sounds so convenient, but I don’t know how I’d handle the initial pain–I am a wuss. That and I’ve never had children yet, seems that a lot of folk discourage it otherwise…I mean, I got my first GYN exam this January and that was the most painful 2 minutes of my life. Even when the boy and I have sex (which is infrequently as he lives 600 miles away), I feel virginal every time. So I dunno how I’d handle the pain of an IUD…
Rozy says:
Tue, 9th Jun 20098:57 pm
@Caitlin Oh yeah! Sorry for the double post. While I completely understand that different birth control varies amongst women, the only reason I shied away from Depo Provera (needlephobia aside) is because my friend got the shot once, and had to endure the godawful side effects including nausea and serious (period-like) spotting for as long as the medication was active…so if you have any problems with that, it’s not as “reversible” as most other forms…just a heads up. I’m sure you’ve done your research.
Jess says:
Tue, 9th Jun 20098:57 pm
It’s so scary all the things that can go wrong with birth control. I had to switch birth control pills because I kept getting terrible headaches everyday and my Dr. was afraid I was going to have a stroke. Now that I switched I’m extremely tired all the time and emotional. It’s better than headaches though.
Caitlin- Thanks for doing this and updating everyone. I hope things continue to get better for you!
Erin says:
Tue, 9th Jun 20099:08 pm
Rozy I am so relieved to hear that someone else felt dismissed by their medical provider. I think it’s astonishing that they would dismiss a patient who has a serious reaction to a medication. I’m glad that you adjusted to your birth control. I hope that in the long run you find something that works even better for your lifestyle.
Alexa says:
Tue, 9th Jun 200910:28 pm
Ask your doctor about Lea’s shield. It’s sort of like a diaphragm or cervical cap but it’s more modern and more effective. Plus, you don’t have to be specially fitted for it. (Just Google “Lea’s shield” to find out more if you have not already.) I think that in conjunction with condoms you’d be all right.
pamela says:
Tue, 9th Jun 200911:14 pm
i’m so glad that you got through the ordeal. that’s terrible that it had to happen to you. i never had problems as serious as that on birth control, but ever since going off the pill due to personal reasons my face has broken out horribly (i never had acne before the pill), my hormones are totally out of whack, and i have developed pmdd when i never used to get pms before the pill. people don’t realize the trouble artificial hormones can cause your body. i’ve been reading up a lot on the positives and negatives of the birth control pill and in recent years there is a lot of new scary information coming up about the effects of these artificial hormones on women. birth control is relatively new if you think about it, and while yes the pill seems like a miracle it can really mess a body up. maybe not for everybody but it can happen to a lot of people. i went off birth control a year ago after being on it for 4 years and i am not the same person i used to be.
i think you should take the advice of other people that have commented and get an IUD. with your history, you do NOT want to be injecting yourself with more articifial hormones no matter how low the dose. it’s not worth the risk. take care & good luck with everything!
pamela says:
Tue, 9th Jun 200911:45 pm
http://www.ditchthepill.org/
pamela says:
Tue, 9th Jun 200911:46 pm
http://www.truthaboutbirthcontrol.com/
also a couple good articles on here
belle says:
Wed, 10th Jun 200911:40 am
@Rose: I’m sorry you felt your medical provider tried to write you off and it certainly sounds like she didn’t delve into your problem or take it seriously. But, I do think it’s good she asked you about you relationships. A lot of physical problems are often caused by mental anguish and b/c of stigma this factor is often dismissed. Also, as a medical student, I know that Americans especially are prone to thinking that problems can always be solved by a medicine/pill – sometimes it’s not that simple.
Good luck to Caitlin!
Caitlin-University of Alabama says:
Wed, 10th Jun 20094:09 pm
Pamela- I have no problem with birth control pills or shots, I actually think they are quite great. It kept me from getting pregnant for the 5 years I was taking it. It lightened my periods, made my cramps (which were the vomiting, I can’t walk type) way more bearable, kept my menstrual migraines at bay, and cleared up my skin a little. I loved my pill. It’s unfortunate that I got a clot from it, but I don’t think women need to shy away from this method of contraception. I just want everyone to be aware of what can happen. I’m not saying down with the pill, I’m saying pay attention to your body.
I do think there are great alternatives to the pill as well. I’m upset I can’t get an IUD because it’s the easiest, but I also can’t change the size of my uterus. I have a diaphragm, my boyfriend uses condoms. It’s not as convenient as the pill, but it works.
Alexa- thank you for this info on Lea’s shield. I’ve never heard of it before, but I’m going to look into it!
Jamie Williams says:
Mon, 15th Jun 200911:23 am
Hi guys,
I recently went through almost the exact same thing, Caitlin. I started dating seriously and started on the pill in December. I went on a plane ride across the Atlantic this past February. On April 14th I started having problems breathing as I was walking a walk from my car to work like I do daily. I thought maybe it was time to start exercising again and didn’t think anything of it.
On that Thursday – the 16th – I was drained when I woke up to get ready for work. I could barely do anything. I drove into work but ended up going back home because I could barely move my body. On Friday, the 17th I felt a LOT better and went into work. My boss, my second mother, encouraged me to call the doctor for an appointment. So I went into the doctor (I am a completely healthy person who never goes to the doctor and never gets sick). The doctor asked me to go get a CT scan JUST to ensure I had no blood clots. I thought this was absolutely ridiculous because there was NO way I would have anything that serious. I figured it was like an infection in my lungs or something.
An hour later, the doctor called me in immediately and had me checked into the hospital immediately for blood clots throughout my lungs. I never had any leg pain, etc. This was the first I’d felt it, no warning signs and suddenly I’m hospitalized because they want to have me on Lovenox. It scared all of my friends and family and especially me. It was then that I started having the pains in my lungs and back. I was in the hospital for 4 days then released with 3 weeks of Lovenox. They determined, 98% sure it was my pill – Apri. The plane flight could have had an effect but it had been over a month and a half since the flight.
They had found a lump in my breast in March and I was supposed to have a biopsy on it, which is why I was on Lovenox so long. They are now attributing the lump to the birth control pill as well. The Lovenox cost me $1,500 for three weeks, 2 shots a day I had to give myself. At the end they decided I wasn’t going to have the biopsy but put it off until maybe I’m off the Coumadin.
I’ve just now, after two months, gotten to where my Coumadin level is ok. I’d like to take another birth control pill, but the only other option is Progesterone pills and I’m too afraid to do that due to everything that has gone on.
I’m a 28 year old woman, too young for something like this to go on. I’m afraid to insert anything into my body that isn’t natural now. Had I not gone to the doctor that day I would be dead.
Life with Coumadin is difficult, but I follow what I’m supposed to do. I’m too afraid not to. I’m hoping I’m not on it for the rest of my life.
Just last month I heard of another friend of a friend who was on the patch and was in the ICU for a blood clot in her leg and in her lungs and was on life support to help her breath. I was lucky compared to her. She can’t breath on her own right now due to the pill.
The other thing I have issues with is this – and if anyone has gone through this let me know.
I’m engaged (to a fantastic guy who has not left my side for all this and has taken excellent care of me) and in a few years we want children. But the increase in hormones is what caused the blood clots and forced me on this medicine. I’ve heard that they put you on Heparin shots if you are pregnant and prone to this sort of thing – but is the Heparin shot the same as Lovenox? If you are on a shot like that for 9 months the cost can be up to 18,000 if your insurance refuses to pay for it, like mine did.
Just be cautious, everyone. I wish there was a way to prevent this, but I’m finding more and more that it’s more and more common. My advice is to just life your life because I’ve learned during all this that it can be taken away from you in a moment. It’s nice to know that you aren’t alone though.
NedNoD says:
Tue, 16th Jun 200910:37 am
I hate HBC (hormonal birth control). I too have a copper IUD. Was on the mirena for about 5 years… lost a lot of hair, gained 40 pounds, had the psycho side effects, and couldn’t figure out my X factor. It dawned on me one day and I had it removed and replaced with copper and I’ve never felt better. My hair’s growing back, I’m loosing weight (20 pounds in 6 months so far without trying), and I feel like me again. Sure, I bleed more, big deal, get the right things and you’ll be set every month (Diva cup rules btw). It didn’t really hurt going in, but I do have a very high level of pain tolerance (I blame kidney stones for that, EVERYTHING that hurts on me gets compared to kidney stone pain, and is nowhere near it. Not even when I broke my foot and was walking on it).
Kalene says:
Wed, 17th Jun 20099:35 am
Hello all,
It’s really helpful to see more women like myself and hear your stories. I was just released from the hospital 9 days ago after 13 days of hospitalization and hell due to the BCP Yaz I had been taking for almost a year so that I could actually have a normal menstruation cycle (I never got mine naturally). I luckily sneezed at work and must have dislodged a piece of one of the 3 blood clots later found in my brain. I say luckily since the CT scans and MRI’s showed major blockage and I could have suffered a full blown stroke in a couple more months. I was a social smoker, but as mentioned above, 2 cigarettes a week hardly could cause that much damage over the 4 months I had been social smoking.
I had one surgery to remove some of the clots, and a second to remove the tubing and metal sheaths they used to do the first procedure (probably the most painful thing I’ve ever experienced. It felt like the surgeons were ripping bones from my body). I had to be awake through both procedures “in case something went wrong.” That sure makes you feel great as they are wheeling you into surgery. The rest will hopefully be taken care of with a 6 month prescription of Warfarin.
I feel like a drug addict now, I take so many pills and the side effects suck. I am taking Diamox for pressure reduction in my head and it makes me depressed and I have to pee ALL THE TIME and have to be religiously drinking water in order to stay hydrated. Due to the pressure, both my optic nerves are swollen and so I have double vision and cannot drive until the swelling decreases, which could be more than 6 weeks. Which also means that I have had to take a leave of absence from my job. I cry all the time, feel like a total stranger to my own body, and feel completely worthless to my family. And I have finally come to the realization that I could have died, and am now hearing about how hard this hit my family, which is depressing as hell.
My INR levels have been all over the place, and after reading the article above, I’m readying myself for the long process of regulating.
I am only 20 years old. I was taking the pill for strictly medical reasons. This should not have happened to me. This should not happen to anyone regardless. But more and more I am hearing of other people who have had this happen, some way more severe than I experienced. Thank you all for sharing your stories. It is so helpful, and please please please pay attention to your bodies and take the side effects of all your medications seriously!
I would be very interested in supporting your awareness fund as well!
Again, thank you and best wishes to all,
Kalene
Liz says:
Wed, 17th Jun 200911:46 pm
Caitlin,
You are so very lucky to be able to go off the Coumadin. I, too, had a blood clot in my left leg (it went to my lung) in March of this year. I’m only 24. I had been on BC for going on 7 years just about. Unfortunately for me, they found that I tested positive for Factor V Leiden and a couple others factors so I will probably have to stay on Coumadin for life. Which sucks because I used to enjoy a drink now and then. But I’m lucky to be here so I guess it’s a tradeoff. I’m worried about being able to find a BC option that works for me as well. I’ve been looking into the progestin-only BC options and the biggest thing that concerns me is that they can actually cause acne flare ups, which for me is not an option since I have very, very acne-prone skin as it is. However, I am looking into the very-low-dose BC pills since I may have to stay on Coumadin for life and I am hoping I could be dosed around them. Thankfully, my PT/INR’s are easy enough to regulate. Truthfully, not being on a hormonal BC scares the crap out of me because it was always my “back-up”. I hate that my boyfriend (who has been great and understanding) and I can’t have enjoyable, spontaneous, worry-free, fuss-free sex anymore. I’m glad to know there are gals out there like me, but at the same time sad for us because there aren’t better BC options out there for us.
Liz says:
Thu, 18th Jun 200912:00 am
Oh, and just to clarify… No, I didn’t smoke, never have a day in my life. I was active (I used to walk to and from work every day) and I hadn’t taken any trips within the six months prior to my clot. For me, it started out as a pain in my calf, almost like a charlie horse, for about a week and I didn’t think anything of it. I had just started a new job and had been running around like a chicken with it’s head cut off getting paperwork, etc done. The pain went away about a week later, and a week after that I woke up one morning with a dull pain in my side. I ended up going to work that morning and took a nap when I got home with a heating pad thinking I’d pulled a muscle somehow or slept funny the night before. I woke up from said nap with excruciating pain in my left side and shoulder and could barely move or breathe. I had my bf drive me to the ER to figure out what was going on. I about landed on the floor when they told me I had a clot in my lung. I stayed in the hospital for about four and a half days and it took about another week and a half for the pain to totally go away. It hurt so bad to move or to try to breathe deeply, I couldn’t even sneeze it hurt so bad. And I had to sleep propped up on 2-3 pillows because it hurt so bad to lay down. It really can happen to anyone. I wish they could come up with a BC that doesn’t contribute to such a serious side effect because it’s so scary to experience.
katie says:
Thu, 18th Jun 20097:31 pm
This was great to read! I just got out of the hospital, blood clot (DVT) in my leg. I was on birth control for years, the same brand and dose, and didn’t smoke regularly…definitely would have a few socially though if i was drunk. Either way, woke up one day with pain in my leg. Thought I tore a muscle from running or something (i work out everyday). I spent 8 days in the hospital getting a shot in the stomach and getting regulated on coumadin. it took me a while to get to the theraputic level too since i am young (25)
I’m in the exact same boat. Can’t really drink at all for 6 months which is a big change for me. I am in the NYC area surrounded by bars and people that drink a lot. Plus I have to take it easy working out which sucks.
no more birth control pills for me! I’m looking on the bright side though, i’ll save money from not drinking! It puts a lot of other things in perspective too.
Courtney says:
Thu, 18th Jun 200911:30 pm
I was on the Pill, but my gyno tested me for Factor 5 Leiden. Its a gene that makes it more likely for you to have blood clots. Long story short, I went off the Pill. I tried the Depo Provera shot, but it causes bone density loss and weight gain, especially for women 18-24. I’m now on Implanon- its an implant thats better than an IUD if you haven’t dilated yet. Its awesome, if you’re still looking for birth control options. Good luck!
Caitlin-University of Alabama says:
Fri, 19th Jun 20092:10 pm
Wow, I am so amazed to see that so many of you have been through the same (if not worse!) ordeal that I went through. I didn’t expect to see so many girls in this position. I am so glad that you all are okay and doing as well as you can.
I’ve been doing a lot of research because it scares me to not be on any sort of birth control. I don’t want to get the Depo-Provera shot after further research, but I’ve come across Progesterone only pills which are used as an alternative for women in our position. I’m going to ask my gyno what she thinks because they are very under the radar, and yet still 98% effective. They don’t regulate your periods or anything, but that I can deal with.
I wish all of you ladies well in your journey with Coumadin, and please keep me updated on your status! Stay healthy
katie says:
Sat, 20th Jun 20099:22 pm
to add to my previous post and since some have mentioned it -
my first form of BC was the depo shot. It was terrible (for me at least). I was soooo moody and depressed about NOTHING. Also, I felt like it defeats the purpose…you stop getting your period in most cases so if it happened to not work you wouldn’t even know. i am paranoid and ended up doing a pregnancy test every month haha. I then moved on the Tri-Sprintec pill which was the culprit of the clot.
I’ve been out of the hospital for 3 days now, and the leg pain is still there. It’s very frustrating! i can walk somewhat normally again w/o a limp but when i’m just standing there, even with weight off my foot, it hurts. My doc said it’ll probably go away in a week or so. here’s hopin!
I’ve completely come to terms with no drinking for 6 months and i’m actually happy about it. I get to put my health first and it opens up all kinds of doors, really. I won’t have hungover mornings/days when i get nothing done!
Also, a perk of no birth control…totally lost weight! probably lost all the water retention, but regardless I feel better in general…aside from the coumadin side effects and the leg pain still..
try to be optimistic! thanks to all who are sharing their stories. At first I thought I was like the first 25 year old girl in history for this to happen to.
Another plus from this, I will definitely be more picky with who I bring home….no alcohol and no BC, the guy will have to be very special now! haha. And when he is…condoms of course.
Sue says:
Tue, 23rd Jun 200910:09 pm
Blood clots can lead to many health complicatons including stroke and are more common among inactive and/or obese individuals.
Blood clots are life threatening however exercise can help prevent their formation and assist in dissoving of existing clots. This fact was discovered and presented to the American Heart association in 2003 by the University of Colorado Health Sciences Center.
The study found that levels of an essential blood clot dissolver known as tissue type plaminogen activator (t-PA) are greatly diminished in overweight men (by as much as 30%). This reduced protection in the blood stream leads eventually to problems with blood clots.
Walking for a period of three months for a mere 45 minutes a day, five days a week however increased the amount of t-PA in the obese participants blood by as much as 50%. The study showed that after this walking regimine the obese subjects had similar levels of t-PA in their blood to that of lean participants in the study. Read more at http://www.trekdesk.com/walk/Blood_Clot.html
Ashley says:
Thu, 25th Jun 20094:28 am
Hi I was wonding can you guys help me. My doctor had me taking one brand of birth control now he switch it how long should i wait before i start the new ones he gave me???
DEB says:
Wed, 1st Jul 20091:16 am
Got my prescription of Yaz on Friday, took it that day and for two more days and quit. I started reading reviews about Yaz and they were super frigtening. The 2nd night i could feel sensations in my body like muscles/arteries messing up maybe.
couldn’t get to sleep. Had mild chest pain/sensations. Felt my heart beat go out of sync here and there. Felt paranoid. And since I skipped yesterday I got itchy rashes on my back! Thank god for cocoa butter…
I’m obese and fear for my health on birth control. I’m gonna get a CT Scan and check my hormone levels and cholesterol. I’m gonna get exercising again, keep getting scans and tests, and explore different brands of BC if possible.
Lynn says:
Sat, 4th Jul 20099:35 pm
Interesting to read this. My 16 yr. old was on Yaz for acne. Severe pain which was misdiagnosed as pneumonia. Finally got a CT scan that showed significant number of blood clots (and significant size) in the lungs. Also caused damage to her lung since it went untreated for so long. I can’t believe I let her suffer with that pain (but the doctors couldn’t find anything). on coumadin but luckily she doesn’t like green veggies and she doesn’t smoke or drink.
Caitlin-University of Alabama says:
Sun, 5th Jul 200912:22 pm
Ashley- that’s really something you should talk to your doctor about. When I switched birth control pills, I was on my period so I was able to switch right away, but you should really talk to your doctor.
DEB- Good for you for listening to your body! You know better than anyone else what feels right and what feels wrong. Good luck and stay healthy!
Lynn- I am so glad your daughter is okay. If you or her have any questions, I am here to help. I’d be happy to help her through her journey with coumadin.
Michelle says:
Sat, 11th Jul 20099:40 pm
Hey Caitlin,
I know a bunch of girls have commented saying they’ve been through the same thing, and you can add me to that list! Reading your story felt like reading my own. I hope you are loving your Coumadin-free life – I’m off it in 10 days!
As for the birth control, I’m going to spend some time off it (condoms w/ spermicide are as effective as BC pills), but my ob/gyn has told me that progestin-only pills are safe, although I’m a little nervous about taking hormones again.
I hope you’re coping with everything, I know I had a really hard time mentally dealing with what happened to me. I still have my days, 6 months later.
Best of luck,
Michelle
Kristen says:
Thu, 16th Jul 20092:29 pm
I am also 18 years old and about 2 weeks ago I was diagnosed with a blood clot in my groin. They had believed there was also one in my lungs after I had been rushed to the hospital for not being able to breath but luckily they did not find one. I am going through all of the stuff that you are and I know exactly how it all feels. I am happy to know that you have gotten better it makes me realize that I will eventually too. My parents and doctors were all super shocked when they had found the clot in my leg and they are still in the middle of doing tests to determine what this is from and birth control is pretty much what they are blaming. It is super hard to cope with everything that has happened especially it being the middle of summer and I am supposed to be going away to university in September. I have been on birth control for 4 years and none of this has ever happened to me, all doctors were shocked. I’m finally off of the needles, they left my stomach with large black bruises and really not nice looking but I am glad that they are gone. I still cannot walk because of the clot and my leg being very swollen but I am happy to be off of my pain killers and only on warfarin. It’s going to be a long journey for my 6 months but I am happy to see that other people have gone through the same thing and are fine.
Hope that you are feeling better now and hopefully start to live your life normally again, I know I can’t wait for that! Thank you for posting your story it made me feel a lot better about my own.
Kristen
Christine says:
Thu, 16th Jul 20099:43 pm
Be thankful that you listened to your body. I did 2.5 years ago. After being very winded doing minimal activity i went to the dr. After a few tests and a scan it turned out i had multiple blood clots (PE’s) in my chest. So many that my doctor asked me if i really wanted to know “how many”. Scary. The good news is that it goes away in under a year. You give yourself 12-24 shots, give blood 1/wk then 1/mo (go to an office that has the finger prick- so much easier and quick!!), ditch the green veggies for a while. After 6 months I was off the pills and have had zero dr appointments for my former clots. To this day i am completely healthy.
My new issue is being ready to use something other than condoms and spermicide. I’m in a 3 year committed relationship and we’ve been using that almost the entire time. I’ve heard bad things about the depo shot, the IUD sounds like a pain with a potentially heavier period, and the diaphram seems like it would be more annoying than condoms.
Elise says:
Sat, 18th Jul 20095:49 pm
I’m 22 years old and I just spent the past 5 days in the hospital with a blood clot in my thigh. This has truly been the worst experience of my life. Non-stop blood tests and getting shots in the stomach 2 times a day are awful. I had been taking birth control for the past 4 years with no problems. I was an on and off again smoker, but I haven’t touched a cigarette in almost 2 years! I am thin and healthy… I never thought this could happen to me. My blood work is still pending but they think its from the BC. I’m on Lovenox and Coumadin right now. If I had known that this would happen I would have never ever gone on the pill. It was not worth it! Hopefully I can get off the Coumadin in 6 months!! I’m so happy I found this article & read these comments. There is such a lack of information online about what to actually expect AFTER this horrible incident happens. Thank you to Caitlin for writing and sharing your experience with everyone.. it has really helped!
Jennifer says:
Mon, 20th Jul 200910:49 pm
I had never paid attention to blood clots much, being only 19 years old. But I too had a problem with blood clots. Ended up with a DVT and a few superficial clots as well. It wasn’t all due to birth control, but most of it was. I was diagnosed with a genetic blood clot disorder. I haven’t really heard of anyone else having this problem at such a young age, and it’s nice to know that I’m not alone.. though I’m sorry anyone has to go through such an experience at a young age. Who wants to be on blood thinners, let alone when you’re just starting your adult life.
Now they just need to develop a birth control that is safe for people like us to take! My doctor told me I’m not allowed to use an IUD either, because it releases a small amount of hormones. It’s really a sucky situation when you have to rely on condoms and/or diaphragms… I really think the worst part about this whole experience is, I’ve been told that when I ever do get pregnant, I’ll have to take the Lovenox shots for 9-12 months on a daily basis to protect the baby and myself. Overall, I wish this experience on nobody else! And thanks for your story.
Leslie says:
Tue, 21st Jul 20092:31 pm
Lynn,
I read your post and would like to compare stories. My 16 year old was on Yaz for three months. During that time frame, she developed tightness in her chest, some difficulty breathing. It escalated to pain in her arms and legs. Her ER visit with chest xray and EKG concluded sports asthma, to which I argued with the physician about. He sent her home with an inhaler that brought no relief. She recently had blood work, looking for lupus, thyroid issues, potassium levels, rheumatoid arthritis, etc. Blood work came back negative. She has not taken Yaz for two months, but the symptoms have not ceased. This is frightening for both of us. We are chasing our tails trying to resolve this – any advice?
Michelle says:
Tue, 21st Jul 20098:03 pm
Leslie – I happened to see your post. Tightness in the chest, difficulty breathing, and pain radiating, usually in one side, to the shoulder are common symptoms of pulmonary embolism. Clearly, PE is extremely dangerous, and it would not become apparent in chest X-rays or EKGs. To rule out clots, your daughter needs to get a D-dimer blood test. An normal D-dimer rules out clots, an elevated D-dimer requires further investigation, usually a chest CT scan, or possibly a chest angiogram.
I’m 18 and I know the ER doctors were very skeptical that I could have clots because of my age. I’m very lucky I had a doctor who decided it was worth doing the D-dimer. Chest pain and difficulty breathing are always serious symptoms – if I were you I would get right back to the doctor and rule out clots asap.
Bibi says:
Wed, 22nd Jul 200912:50 am
Glad to hear that you’re doing better!
I’ve had blood clots in my right leg for 5 weeks now and i’m still in a lot of pain. It’s pretty frustrating for me because (like yourself) i like to be active, go to the gym and now i can’t do any of that. I’m always tired and in pain.
I hope it’ll be over soon!
Take care and cheers for being a trooper!
PS: im 28 and i still think i’m too young to have the clots :s
Leslie says:
Wed, 12th Aug 200911:12 pm
Millions of women worldwide are exposed to the clotting risks, experience life-alterikng conditions and some die because of lack of information or not seriously evaluating the magnitude of risk. All this suffering, despite the pharma cos and medical community knowing of the disabilities and deaths.
So let’s have a dialogue on the practical ways to make young women aware all the facts and then get started!
I’ll start:
1. stand-up card in gyn exam room with URL with facts;
2. You know how you always look up a the ceiling in the exam chair, so a poster there with a URL
3. dramatic photo of women with clots in ER or undergoing serious operation – with URL
4. magnet for metal, public restroom stall doors with URL
So what are your ideas? Let’s get this going!
Jess says:
Wed, 19th Aug 20092:45 pm
Caitlin – what pill were you on? im nervous to start mine now…
Astrid says:
Tue, 15th Sep 20093:30 am
Hi,
About 4 months ago I fainted in the street and was brought to ICU wit lots of blood clots in my lungs. I’m 22 years old, healhty, non-smoker etc. and I am not predisposed to any blood clot conditions.
I’m allowed to stop taking coumadin by the end of October and I am really keen on finding another contraception method than condoms. I spoke to a gyno who said that the mini-pill and Mirena should be fine, because there’s no estrogen in them. However, when I google them, they advice you not to use it if you’ve had blood clots. The gyno said that they just write that so that people won’t sue them in case they have a blood clot.
What do you ladies think about that? Are the non-estrogen birth controls alright for us?
And I am soooo having a green-leaf-vegetable/eneergy drink/alcohol party when I finish coumadin!
Caroline says:
Wed, 23rd Sep 20096:44 am
Hello All,
I just wanted to share my story as well. When I was 20 years old, I started taking Ortho Tri Cyclen Lo on January 9. The week of March 20, I had a headache every single day and I was someone who NEVER got headaches. I thought this was odd, but didn’t really think too much into it. On March 27, I woke up at about 8am with this horrible pain on my right side. It felt like someone was stabbing me with a knife every time I took a breath in. I immediately went to a local urgent care to get checked because I knew something was not right. The funny thing is, by the time I got to the urgent care place, the pain was gone. I explained it to the doctor and he did a physical exam and then took x-rays of my chest, but he found nothing. He asked me if I was on any medication and I told him I had just recently started taking birth control. The minute I said that he told me to go to the ER at the local hospital to get a CT scan because it could be a blood clot.
As soon as I heard that I was a little freaked out, but he said since I was so young that it was probably something else, but just go check to be sure. When I got to the ER, they first took me to get ultrasounds of my legs because that’s where clots usually form and then they travel through the body. After the ultrasounds were done, the doctor said there was no evidence of any clots in my legs or having been in my legs. I was feeling more optimistic then, especially since the pain had not returned. Then they took me to get the CT and the nurse said “This will probably be pointless since you’re so young.” Again, I felt better.
Well then as I was sitting in my ER room and my dad was in the hallway, I heard the doctor say to my dad “She has a clot in her lung, we’re going to have to admit her.” I have never been more terrified in my entire life. I immediately thought I was going to die and started crying and freaking out. The doctor tried to calm me down, telling me that blood clots are a very common thing that people get every day and since they caught mine before it did any permanent (or fatal) damage, I would be fine. I spent the next 5 days in the hospital getting Lovenox shots twice a day.
After my release from the hospital, I had to be on Coumadin for 7 months. I got off the Coumadin on November 1 and my 21st birthday was November 14 (thankfully!!!). It’s been over 5 and a half years now since my experience and I have been just fine. I have to take Folgard every day for the rest of my life, which is a folic acid/B12 supplement, to help prevent anything further. I came to find out that I too (like many of you) tested positive for Factor V Leiden and that with the added levels of estrogen from the BCP, it triggered a clot.
It is EXTREMELY important to get tested for any genetic mutation or problem that could have attributed to your clot. My dad, who is 62 and has never had any blood problems, just recently had one blood clot in his leg and two in his lungs. He tested positive for the same thing. The doctor said that it is genetic and it can cause clots in both women AND men, regardless of something like BCP to trigger it. So for all of you who have also had a clot(s), please tell your family members to get tested just to be sure. After my dad’s hospitalization, my brother got tested and found out he has it, too. So now he is also taking folgard as a precautionary measure.
Most of you here seem to have just experienced this awful thing, so I just wanted you to know that 5 and a half years later I am doing fine. Just push through the horrible Coumadin phase and know you’ll be back to normal soon!
P.S. I never smoked a day in my life and was very active in dance and cheerleading when I got the clot.
Jamie Williams- In regards to your question about Lovenox and Heparin, I have researched this a lot because the older I get the more I am looking towards my future pregnancy plans. The reason women are given Heparin and not Lovenox while pregnant is because Lovenox will cross the placenta, while Heparin will not. From my limited research, it seems that it is perfectly fine to have a healthy pregnancy and delivery while on Heparin, so we should be fine! Hope that helps:)
MC says:
Fri, 25th Sep 20093:32 pm
I’m 28, active and healthy. I just finished 21 days of birth control pills. I’ve never been on the pill before. About a 7 days in I started getting leg cramps. About 2 weeks in I started having chest/heart pains, trouble breathing, arm pain and numbness, neck pain, shoulder pain, and head pain. all on my left side. I followed the advice of a nurse and went to emerge, I explained everything to the doctor. I was dismissed after routine blood work. I didn’t have a D-Dimer test. Two days later my symptoms became progressively worse. Head pain intensified. jaw pain, confusion, weakness, fainting. Taking the advice of my medical clinic, I went to another emergency room. I explained everything again to a doctor who said “we don’t care about you, you are young and have healthy vital signs.”,and that my symptoms were to broad and general. He said “I will not tell you this is because of the pill” again I was dismissed. I know something was very wrong with me. The worst may be over, I still have the same symptoms that feel very specific to me although they have lessened. I spent a week in bed as these symptoms were debilitating. From all of your post, medical advice I’ve received (outside of these emerge doctors)and research it would seem these are symptoms of blood clots, how can I get a CT scan or an ultrasound or both if I can’t get a doctor to listen to me? Do they know something I don’t. Does anyone have any suggestions.
Kimberly says:
Fri, 25th Sep 200911:19 pm
I just want to let you all know that if you have problem with clot and one type of birth control you are likely to have problems with any type of birth control. I just found out 2 weeks ago that I have a brain full of clots I am on blood thinners, my doctor told me I would never be able to take any kind of birth control. I had the depo shot about 3 weeks before they found the clots they told me that is what caused them. I feel like I was given a death sentence, very hard to deal with and for my family. I cry every night because where the clots are it is very dangerous. I worry all the time that one will move and I will have a stroke or die. I am only 36 yrs old and a non-smoker. This was the first time I had tried the shot. Now I have awful headache all the time they never let up. I am on parnate which is an anti depressent, strong pain killers for the headaches that just take the edge off but does not take them away and blood thinners. I have to have my blood tested 2 times a week and my doctor put me off work for atleast a month then I will get another MRI if I still have clots he is not going to let me go back to work. This is having anvery neg affect on my marriage my husband is so worried about me that he doesn’t know how to deal with it and I don’t either, we are both afraid I will not wake up going to bed at night is the hardest time of day. It has put a strain on him because I can not be left alone he has to be in the bathroom while I take a shower I can’t drive I am completly dependent on him, something he has not been use to since we have been together. I have always been an independent person now I am like a little kid that needs a baby sitter. It is hard and from what I understand I will be living this way for months.
Amelia says:
Wed, 7th Oct 20093:51 am
I am 20 years old. In February 2009 I was diagnosed with Pulmonary Embolism (blood clot in the lung). I was on the NuvaRing for a month! I had been on it previously for a year and had no problems. I was coumadin for awhile, but my doctor could never get my INR regulated. Gradually I stopped taking the coumadin. I have no evidence of clots (landed in the ER last week cuz I couldn’t breathe) but am still having issues. I can never been on any form of birth control because of the risk, unless I use condoms. When I have kids I have to be on Lovenox shots for the pregnancy and coumadin for 8 weeks after delivery due to the increased risk of blood clots.
Doctors have no idea why I’m having chest pain and difficulty breath and why I am having pain in my lower right leg.
Being on Coumadin pretty much ruined my life. I couldn’t take any pain relievers, not even tylenol. I was tired all the time, losing my hair and had to change my diet. And talk about freezing my butt off, I just couldn’t get warm. I cut myself shaving once and landed in the doctors office because I couldn’t get it to stop bleeding. My gums would bleed when I brushed my teeth and if you thought about touching me I would bruise.
Clots are not something to joke around with. And they can pretty much destroy your life.
Christie says:
Sat, 10th Oct 20099:57 pm
Caitlin, I could not have said it better! I was diagnosed with PE in the lungs on 7/24/09 and was scared shitless!! I’m a 32 years old non smoker with two children under age 5 and had a fear of not waking up in the mornings to see my babies for weeks after I got home from the hospital, I was mental head case! I was taking Yaz for 10 months and it turned my life upside down. I can wait for my life to get back to normal in March 2010! Thanks for your post! Take Care!
Sarah says:
Tue, 13th Oct 200911:07 am
Thank you for sharing your story Caitlin! I have been there, done that. Glad to hear others are writing about their situations too! Hugs!
http://peat25.blogspot.com
Amanda says:
Sat, 17th Oct 20093:37 pm
i just turned 20 and i just found out that 5 years ago when i took the depo shot i got blood clots in my led i almost died i was in the hospital for 3 weeks one of them in icu it is a very scary thing your story and others are helping me learn what it is that is going on with me i never new that green food changed my INR so much i hope buy not eating them they will get my INR regulated it is getting so hard for them to talk blood from me i am starting to pass out and getting poked 3 timed just to get one vile of blood IF ANY ONE HAS ANY MORE ADVISE OR INFORMATION ABOUT THIS I WOULD LOVE TO HEAR IT EMAIL ME AT Amanda_Dettling@live.com
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