IamA 19 year old woman who has suffered pulmonary embolisms from the use of Nuva Ring. AMA!

JUST TO CLARIFY EVERYONE, NO SHE DID NOT SMOKE.

SHE DOES NOT SMOKE.

NO SMOKEY.

now stop asking.

Thank you, ExtraCommas! :D Lol

Nuvaring (and any combined hormonal contraception (CHC) (eg. estrogen + progesterone)) does increase the risk of a venous thromboembolism which can lead to a pulmonary embolism. However, don't freak out! Let's put it into context of what the risk actually is.

Venous thromboembolism (VTE) - absolute risk:

• Baseline: Non-CHC users: 4-5 per 10,000/year; ↑ with age e.g. >39yrs

• CHC Users: 8-9 / 10,000/yr (up to 14/10,000); highest in 1st yr;

• Pregnancy: 29 / 10,000/yr (Immediate post-partum period: 300-400 / 10,000/yr)

So what does this mean? Being pregnant increases your risk of having a VTE MORE than the birth control. Also, the longer you're on a form of birth control, the risk further decreases over time.

Obesity, sedentary life-style and smoking makes your risk go up just as much, or more than birth control.

So, someone who is overweight, >40 years old, smokes and isn't active already has lots of risk, so adding more to that with a CHC might be a bad idea, and would be better served with other options.

Progesterone only forms of birth control (the depo-provera shot) or the IUDs do not appear to increase risk of any of this.

SOGC guidelines: http://sogc.org/wp-content/uploads/2013/02/gui252CPG1012E.pdf

Which is why I am now on the IUD Mirena! That is very interesting information! Thank you for sharing! :D

My IUD is the best thing that I have ever done for myself. Hurt like a bitch but it is worth every insurance covered penny.

I completely agree! :D My OBGYN had to do it twice because the first time she put it in, the applicator slipped x_x That was a hell of a time but it is so worth it ;D

Glad you're ok--if you want any other info about endometriosis or meds you might be on, feel free to PM me

Thank you! I greatly appreciate that! :)

My first lap for endo is next week, and I'm getting a little nervous. Your incisions didn't look too bad though! If you haven't yet, check out /r/Endo. They're pretty friendly over there :)

I will be sure to do that! Good luck with your surgery! It really isn't all that bad so you don't need to be nervous! I hope everything goes well for you! :D

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....Wow! Thanks. How nice of you.

I am currently on Nuvaring because when I tried to get Mirena the pain was like nothing I had ever experienced, and the doctor was unable to get it in. (I'm also 20 and never had kids or been pregnant.) The doctor also told me that if they tried to force it in it could possibly puncture my uterus which would decrease my ability to become pregnant later in life. What should I do? I mean, you had to get surgery in that region, so them putting an IUD in must not have been that bad, but I'm terrified! Yes, I am also terrified of pregnancy and birth - but I will cross that bridge when I get there.

Oh! Also, I would like to add that I am currently fully covered under planned parenthood and the cost of the IUD would be completely covered by my plan. So is the Nuvaring. I've been on Nuvaring for over a year and never noticed anything abnormal.

Good! If the Nuva Ring is working well for you then use it! Just please pay close attention to anything abnormal and be safe!

I've never been pregnant or had kids either and it really did hurt to get the Mirena in but I think it was worth it! (Even though she had to do it twice cause the first time the applicator slipped x_x that was a blast lol)

My girlfriend is actually on that, and it has treated her rather well! Just be careful to knock the little bugger crooked. Not easy, but not impossible!

My sister is also on Mirena and her's was knocked crooked D: She was so scared! She got it fixed though! :D

Good girl OP answers same question about smoking twenty times.

:D

I'm currently in nursing school and have gone over this subject a few times... Books describe patients experiencing a, "feeling of impending doom" holy shit how does that feel like?

Lol! That's a good way to put it actually! xD It was pretty damn scary, I'll be honest. I'm just glad the doctors were able to figure out what was going on with me so quickly. I really think the clots buster shots they gave me everyday had a huge impact. I'm happy to be alive!

Were you a smoker?

No, I was not.

Nor was I ever around anyone who was.

What does it feel like when you are having an embolism?

It is such a weird feeling and it's kind of hard to explain! My chest just felt so tight and I was having a really hard time breathing. I was also extremely over heated because my pulse was so high from trying to pump blood into my lungs. My resting heart rate when I finally got to the ER was 148 which is totally not safe for someone my age lol. Normal resting rate is supposed to be between 60-80!

A friend of mines sister actually died from using a nuva ring, clotted her blood. Glad your still alive!

Oh no! That is so unfortunate :( I am so sorry to hear that :( I'm just lucky that they were able to figure out what was wrong with me before things got even worse..

And I'm glad to still be alive too. I feel very fortunate and so grateful to all the people who took such good care of me while I was admitted in the hospital. Thank you very much :)

I had a pulmonary embolism (2 cm clot went through my heart!) and it nearly killed me. This was back in February. I was on birth control for about 10 years before this (and no, I did not smoke) but found out afterward that I have a genetic clotting mutation. OP - I'm glad you survived! This was the scariest thing I have ever gone through, and it has had long-lasting effects on my life.

I am so glad to hear that you are doing okay! That is just so scary! When I was in the ER they did a test to make sure I had no holes in my heart for the very reason of it possibly traveling elsewhere. Thankfully, I do not have any. It really is a very scary situation to deal with and it also has effected me to this day as well but I am so glad to hear that you are doing well too! And thank you very much for your concern! :D

Unfortunately, I am not doing better. It really screwed a lot of things up, and I'm trying to recover from it and finish a PhD but I'm just so damn happy I survived it that I know it'll be okay. I'm so glad you've been upbeat from this. Have you thought about joining an advocacy program? I'd really like to get involved with something like that, but have no idea where to start. I wish more girls understood the risks more than just the "oh, it couldn't possibly happen to me."

I am so sorry to hear that :( I really hope that things start to get better for you! I hope that you recover quickly and are able to get things back in order. I had a hard time trying to get back on my feet at first too. Since I was out of school for so long I lost a lot of my really good friends and became very lonely and depressed because of what had happened. I am doing much better now. I have an amazing boyfriend who takes very good care of me and is my best friend more than anyone has ever been. He's helped me get through everything by being there and being strong for me.

I actually have but I have no idea where to start either! D: And I agree. Because it can happen and likely will to a lot of girls and I wouldn't wish that on anyone.

When/how did you realize something wasn't right?

Well I am also asthmatic so I started to notice that whenever I would even exert myself just a little bit, like going up a flight of stairs, I had the hardest time catching my breath. Naturally I blamed it on my asthma. But then one morning I woke up and noticed that whenever I would swallow my spit or food or drink that I had a really tight pain in my chest. I also would feel that pain whenever I would breathe in deeply. So I went to school just thinking it would go away later on during the day.

I was participating in a play at my school at the time and we were doing a lot of vigorous practice. I finally got home and I was just in tears from how much pain I was in and how badly my chest was hurting. I was also having a really hard time breathing and that's when my mother's alarm went off so she rushed me to the hospital. They ran all sorts of tests to try and figure out what was going on. I had multiple EKG's done, x-rays, then they finally did a CAT scan of my chest. The doctor said that based on size for a scale of 1-10 my embolisms in both lungs were 7's and 5's.

I'm so sorry this happened to you. Endo is so frustrating and nobody really knows what to do to treat it, so I feel like people with endo are a bit like guinea pigs.

What are you doing now to control the endo (besides the lap)? I just started Aygestin 15/mg/day. I had a lap to remove mine almost two years ago, but it's grown back in more places, which is why I started the hormone. My dr wanted to start me on lupron and I was like, hold up, let's do something a little less drastic first.

I wish you best of luck in the future.

Thank you so much! I wish you the best of luck too! Endometriosis really isn't a fun thing to deal with! This is the second Lap that I have had done and my OBGYN was shocked to see that as much had grown back as it did.

I unfortunately cannot be on any type of birth control that has Estrogen in it anymore so the next best option for me was the IUD Mirena. It has helped so much with the cramping but like I said, the tissue had been growing back so my cramps had slowly started to get more and more painful which is why I just had another lap done yesterday.

I had an employee that had pulmonary embolisms rumored to be caused by past steroid usage, he had always taken long breaks (to goto the bathroom) and I was always cool with him, because he was a cool guy, one day he was working and standing on the space heater, and was having a very hard time getting warm, and was pale and visibly weak. I asked him what was going on, and he confided in me what he was going through, I pleaded with him to goto the hospital, not knowing he was so sick and just trying to make some money to enjoy himself while he could...he was in the local hospital for one day, where i visited him, then the doctors convinced him to get transferred to a neighboring state to have surgery where he passed away on the operating table. Please take care of yourself, and enjoy every minute. Miss you Mitch.

That is so unfortunate :( I am so sorry to hear that and I am very sorry for your loss :(

How were you treated for the pulmonary emboli? Systemic anticoagulation or embolectomy?

They injected me with a clot buster everyday I was in the hospital. I can't remember the name of the medicine but they also had me on the blood thinner Warfarin as well.

My ex had a pulmonary embolism before I met her. Her stories sounded so terrible. She said she had to go to the doctor daily to get blood drawn so they could test it and determine her medication dosage the next day. For a year.

This is exactly what I had to do too. They had to draw blood every week to check my INR levels when I was on the blood thinner Warfarin. It kind of sucked but I quickly got over my fear of needles :D Lol

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I am! :D Thank you! I'm just happy to be alive and kicking haha :)

How did your doctors determine your embolisms were caused by the Nuva Ring?

They ran a few blood tests to see if I had any genetic mutations in my blood that might have caused the embolisms and all the tests came back negative. The only explanation for the embolisms in someone my age was the fact that I was continuously on Nuva Ring which did have blood clotting as a side effect. It was just so unexpected because of my age.

How long did you use the ring for?

I was on it normally (in for about 2-3 weeks, out for one then replace it and repeat) for about 6 months. Then I had to have a laparoscopy done and that's when I was put on it continuously (which is where I wasn't supposed to have it out in hopes of it preventing more tissue growth) for 1 year and 7 months.

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-I had a hard time walking and going up stairs for quite a while! I would get black spots in my vision and nearly passed out quite a few times because of the hard time I had catching my breath. -I was diagnosed after multiple tests in the ER. They did EKG's, lots of different blood tests, x-rays, and lots of CAT scans too! -I am an asthmatic so whenever I would get really out of breath and fatigued I just blamed it on my asthma until I started to get the chest pains! -My scariest thought? Haha.. Oh man. I had a lot of those when I was in the hospital. Am I going to die? Why is this happening? I'm fairly young so when this happened I was really scared and confused.. When they started to freak out over my resting heart rate (which was 148 when I was first in the ER) I started to sob because I didn't understand what was going on. -I'm not sure actually! I don't think that that happened to me :\ I'm not 100% positive! Sorry! x)

Thank you very much for your concern and it is an honor to meet another survivor! The best of luck to you, my friend! :)

PC or Console gaming?

Both! :D I had nothing else to do once I had finished all my homework and watched practically every movie I had in my collection lol :P

Hey there, I could have been in your shoes (or worse) if I hadn't changed my GP recently. I regularly get migraines with aura, which means that if I take a certain type of contraceptive it could cause clotting in the blood vessels in my brain, causing a stroke (I'm only 22). My former GP knew this and still prescribed me dianette. I took it for over a year until I had to move recently and my new doctor was extremely concerned when they realized I was taking it. I can't take the combined pill or the ring or the patch. I can only take a progestogen only pill or get the bar. I'm sure you know this all ready but those two options would also be perfect for you. I think that putting this story on Reddit will help other women realize that certain types of contraceptive can be really dangerous so kudos and I hope you feel better soon :)

Thank you very much! I'm glad your new doctor addressed that with you! I am now on the IUD Mirena and I love it! :)

Have you been tested for blood clotting disorders? My father had a PE and when they ran the tests they discovered he had Factor V leiden. I got tested and also have it, along with ANOTHER clotting disorder, this one from my mother.

I was immediately taken off hormonal birth control and have had to take lovenox (blood thinners) during pregnancy.

I am amazed I never had a blood clot during the 5 years I was on hormonal birth control (including nuvaring). I am sad my dad had to have a blood clot, but he was fine and the knowledge gained from that potentially has saved my life!

Oh wow, I am glad to hear that your father and you are doing okay! I'm sorry to hear about that! When I was in the hospital with the PEs they did do the Factor V test and it came back negative. They did other tests too but I can't remember what they were. I have no clotting mutations in my blood though. Just really bad luck ;)

I'm also a survivor of pulmonary embolisms. What did they administer to you while in the hospital to help deal with your clots?

I can't exactly remember the name of the medicine but it was a clot buster. They would inject it into my stomach everyday I was in the hospital and it is one of the most painful injections I ever had. It felt like they were injecting liquid fire into my body and it would almost immediately bruise after every time they administered it. I will have to try and remember what it was called and get back to you on that! I am glad to hear that you are a survivor as well! I hope you are still doing well to this day!

Probably Heparin or Lovenox. Thank you! I received Heparin through my iv, then Lovenox injections twice a day. I'm now on 20,000 units of Heparin, 10,000 units twice a day. I go every 8 weeks for blood checks. Been on this since 2011 due to genetic blood clotting diseases! I'm used to the burning, but still have issues with the bruising. I'm glad they found out what was causing it and you were spared with this long term burden!

Yes, that is what it was! I think they actually gave me both because I know I've had both of those lol. I had Heparin just yesterday before I had my surgery! The bruising is definitely not fun at all! And thank you very much! I hope that things will get better for you in the long run! :)

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I hadn't had sex until after I had already had surgery to get rid of the tissue so I honestly cannot say! I'm sorry! But now that I am sexually active but on an IUD I really haven't noticed any pain with it that feels like my endometriosis cramps do. If I were you, I would go see your OBGYN and talk to them about it! Sorry I couldn't be of more help! :(

Will you ever approach other types of birth control?

Since it is the best way to control the cramping that I have, yes. I just can't use any other type of birth control that has estrogen in it. I am currently using an IUD called Mirena which is helping a lot. Obviously I had to have another surgery for the endometriosis but the Mirena really did make a difference for me! :)

Are you going to be okay? How is this going to render your sex in the future?

I am doing so much better now! It hasn't much rendered my sex other than the fact that I am worried about possibly being sterile because of how many CAT scans I have had and the possibility of scaring on my fallopian tubes.. My boyfriend always tells me not to say that I might be sterile but I honestly am worried that I might be. I won't find out until we start trying to have children though! :P

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Before I met my current boyfriend/fiancee I actually asked about a hysterectomy but since I am so young, they wouldn't even consider it. I do hope to have kids sometime in the future with him but I am a little worried about being sterile due the amount of CAT scans I had done.. My SO and I have discussed it and if and when we try to have children and I can't then we are just going to adopt! I appreciate your question and advise :)

Came here to day you're damn strong. Had PE myself (I'm a guy, who is genetically predisposed.) It's not easy to go through, and it's hella scary when it happens. Stay strong, Miss Omnomonramen!

Thank you very much, good sir! I am glad to hear that you are doing well! I wish you the best of luck :)

Was any legal action taken? How did that turn out?

My parents attempted to sue the company in order to get compensation for my massive medical bills. This all happened during my senior year in high school but unfortunately the lawsuit didn't happen. My parents figured that they were not going to get as much as they would end up spending for a lawyer for the case so they pretty much just dropped the charges.

Hypercoaguability (and thus risk of pulmonary embolism) is a well-known side effect of any hormonal birth control. Even if your parents had gone along with the lawsuit, they probably wouldn't have won (although I guess there's settlement money). Your doctor should have warned you, but it's on the label, it's online, it's everywhere. Sorry you had to go through what you did though. I'm glad you're ok!

Thank you very much! :D I am glad that I'm doing better too. It was a lot to go through at my age, especially because I was in school but my one huge achievement is that I got to graduate with my class even though I had been in the hospital so much.

Damn, that's lame. I swear I always see commercials from ambulance chaser law firms about this exact thing that happened to you.

Yeah, it was a really scary situation! The average resting heart rate for someone my age is supposed to be between 60 and 80. When I was in the ER my resting heart rate was 148. The hospital was shocked that I didn't have a heart attack!

You may want to look into this more yourself. Personal injury attorneys almost exclusively work on a contingency basis which means they only get paid if they get you a settlement and their fee comes out of the settlement. The fee is usually very high on mass tort pharmaceutical claims like this (40%) and your health insurer may even get a portion of a settlement, but you will likely get something which is better than nothing. The settlement amounts on Yaz were quite high - Nuvaring I am sure is different but again, might be worth your time.

I'll have to take a look into that then. Thank you!

Yeah, my girlfriend switched over to the nuva ring a few months ago and now she's pregnant. I'm very sorry to hear your medical condition-- and I wish you the best in feeling better and getting well.

Thank you very much! :)

Did you smoke cigarettes at the time or have migraines? Or, was it shortly after a surgery?

No, I did not smoke at all when this was happening. I did get frequent migraines but that runs in my family and I still get them to this day.

I had to stop taking my combined hormone pill because I get migraines with aura frequently, and apparently this increases your risk of stroke significantly. I think I was told that if I continued the pill, I had an 80% chance of stroke by the age 40 (I'm 22).

So I switched to mirena last year, and my migraines have actually become less frequent. I was getting them 2-4 times a month and now I get one every other month. I can't imagine what the combined hormone was doing to me!

I'm glad to hear that your migraines are less frequent! They are definitely not fun to get! o_o

I'm on the Nuva Ring right now, and have been for about 4 months. I haven't experienced any issues, but have heard enough horror stories (my cousin's friend had a stroke because of it, for instance) that I've got an appointment with my doctor in December to get prescribed for an IUD.

Since I saw in another comment that you're on Mirena, how are you finding it?

Personally I love Mirena. If you are not having any issues with the Nuva Ring then by all means, use it! But I just want to ask you to keep a close eye on yourself and have regular check ups with your OBGYN. But honestly, Mirena was worth the painful procedure and every penny!

My SO is about to start using the Nuva Ring. She is totally healthy and a non-smoker. This definitely raises my concern though. Would you strongly advise against the use of it?

Personally? Yes.. Just because of how unexpected it was and since I wasn't a smoker and am fairly healthy as well I would definitely say she talk to her OBGYN and try something different. I am currently using the IUD Mirena and I am very happy with it!

Is this something that is common? I've been on birth control for a while so should I be worried or something? Is there anything I can do to prevent stuff like this?

I'm not sure how common it is but if I were you I would talk to your OBGYN and address your concerns about it with them. I'm sure they would be able to put your mind to ease about anything! Regular testing of your bloods INR levels might definitely help just to make sure that your clotting factor is or isn't too high or low.

If you are on Nuva Ring, I would definitely advise you to talk to your doctor about an estrogen free birth control. I am currently using the IUD Mirena and I am very happy with it!

This hits close to home as my neighbor or had the same thing and was in rough shape. Are you joining in the class action lawsuit?

My parents were going to but they decided against it. They didn't think that it would be worth spending the money on, which was fine by me.

My girlfriend is on the Nuva Ring, she's anemic. She's been in it for the last year. Should we be worried? Sorry, probably a dumb question that could be answered on a NR FAQ forum but I would like to get input from someone with experience.

If I were you I would have her go to her OBGYN and address her concerns about it if she has any. Also just keep a close eye on her as far as her having any chests pains or trouble breathing. If she is very quickly fatigued from climbing a flight of stairs and having trouble catching her breath after doing so, I would go right to the ER.

Me too! Glad you're ok.

Thank you very much :)

What are the correct numbers to next weeks lottery?

All of them! >:D

I'm on the Nuva ring :(

Not to worry! If you have any concerns just address them with your OBGYN and be sure to pay close attention to any signs in your body that you feel are not normal! Just be careful :)

Did they put you on a blood thinner?

They did! I was on Warfarin for about a year.

Did you get money from the company?

Unfortunately, no. My parents decided it wouldn't be worth spending the money for a lawyer and probably not getting anything in return.

Proof?

It wasn't really in the news or anything but I can show you pictures of the surgery that I just recently had to remove more of my endometriosis if you'd like!

You could provide some kind of proof to the mods.

I did just edit the post and put some pictures in from my most recent surgery for my endometriosis. If that counts x)

I hate to see discussions removed for lack of proof. I think it's great you're doing this AMA.

I'm glad to hear you're doing better now in terms of your health.

We all have to be our own health advocate, and sometimes that means not putting so much faith in our doctors and the studies that claim some drug or treatment as being effective. Even rare side effects do occur, so it's not wise to think "that won't happen to me."

Thank you very much :D I really appreciate that :)

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Of course! My apologies.

I am going to guess you were a smoker since you are avoiding answering the question. I guess you failed to read the warnings on the box. It would be useless to sue the company since you caused it by doing what the doctors, pharmacists and box told you not to.

No, I am not a smoker and I answered that question many times x_x I'll have to put that in the initial box on the top..