Sally – Age 20

It wasn’t until a few days ago that it sunk in that I am a very lucky person. I feel so privileged to be here today, able to share my thoughts and voice facts that need to be not just heard = but listened to. More importantly, I feel so grateful to have the opportunity to be a voice for the all of the other young women who have lost their lives due to complications with the NuvaRing.

I am calling myself Sally here, although that is not my real name,  because I do not want my personal health information available to everyone on the internet.  But I do feel it is important for women to know what can happen to them.  I had just celebrated my 20th birthday about three weeks before I got sick. I’m currently a junior at CU Boulder studying sociology, and let me just emphasize that I do very much enjoy what I am studying. I have plans for incorporating sociology and film together to direct and create documentaries that need to be created. I’m even considering starting to work on one on the NuvaRing, maybe, as there is a lot to be said. I paint with acrylic inks in my spare time, bike back and forth to school and in between classes five days a week, and by anyone’s standards, I was a young, healthy, typical college student very much enjoying my life.

Everything began to change on August 30th. A sick friend came over on the evening of the 27th, and my boyfriend got sick the next day, and shortly thereafter I started getting a runny nose and tiring easily. It reasoned that I had simply “caught something” from either of them, and wasn’t surprised when I started coughing, needing to sleep a lot more, and generally felt under the weather.

Whatever I thought I’d caught, however, wouldn’t go away and seemed to hit me harder than the others. I stayed sick for a good three weeks hoping my body would just fight it off. By September 19th, however, I made a same=day appointment with my doctor because, on top of the painful coughing, I also started to experience a really horrible pain in my right shoulder/chest area. It was sometimes ok when I would stand but at night I couldn’t get comfortable because breathing hurt. I didn’t feel “short of breath.” – but the act of inhaling and exhaling physically hurt that area of my chest. It was a pain I hadn’t felt before, yet manageable. Still though, I set up an appointment because it certainly hurt enough to get it checked.

My usual physician wasn’t available on the 19th so I was referred out to a different doctor at another hospital location. Once there, I relayed my symptoms to the doctor. I explained how long I’d been sick, how terrible the coughing and my chest hurt, how tired I was, etc. He prescribed me a five=day antibiotic and cough medicine then listened to my lungs with a stethoscope and said that it sounded like I had pneumonia. He then ordered an X=Ray. I made my way down the hall and got the X=ray done to find out that it wasn’t pneumonia over phone call. I was left to pick up my antibiotic and cough medicine and go home. I was told that my x-ray was CLEAR.

On September 23rd , things took a turn for the worse so I made a follow=up appointment. That sharp, knife=like pain in my upper chest/right shoulder area became unbearable. At this point, it still hurt at night but also started hurting during the day while moving around or standing.

The appointment was at 4:30. I explained the pain to him how I explained it previously, except for this time I told him that if 10 on the pain scale was getting your arm ripped off, my chest hurt like an 8 or a 9. I was pretty up=front about telling the doctor that I had never been in pain like this in my life. Once again the doctor ordered an x=ray, then briskly walked out of the room and left me with the nurse to get the referral for the x=ray. He looked annoyed when I pressed him for instructions on how to handle the pain. I’m pretty decent on picking up at body language and (at least from my perspective) it genuinely felt like I annoyed the Doctor by pulling him aside and asking further questions. He took a big huff, looked off to the side, and said “Do you have Advil at home?” I said that I had ibuprofen but that I was already taking three with the max being four and that it didn’t really do anything for the pain. He said “ok, just go ahead and take four and that should work.”

Being a twenty year old student, I felt too intimidated to press further. Feeling defeated and frustrated, I went to get the x=ray, and waited in the hall for the results. A few minutes later I was told I “might have had a little bit of bronchitis and maybe pneumonia because the tubes of my lungs looked a little enlarged” but was assured there was nothing serious because “everyone’s lungs looked a little inflamed around this time of year.” I wanted a little more clarification on my condition and the doctor called me a few minutes later and confirmed what the first guy had said. I again mentioned my pain and he informed me that my pain was “common” for someone who had a sore chest from coughing for as long as I had been.

My pain was not taken seriously and no further tests were done to rule out anything more serious. I was extremely exhausted at this point and just wanted to go to bed. My mother called to see what happened at my appointment and was angry at the level of care I received and told me to go to the emergency room. I was simply too tired at this point and just wanted

to go to bed=so I went home – and took four more Ibuprofen for the pain. It dulled the pain enough that I could work on homework for a while. In the meantime my mother had called an advice nurse who recommended that I go to the ER. I explained that I would go tomorrow but was exhausted and just needed to sleep. She told me if ANYTHING changed to please go in and informed me that she would be coming to Boulder in the morning. I agreed and went to bed. When I tried to sleep, however, I was unable to find a comfortable position. At some point I fell asleep but I woke back up after midnight with severe, severe pain in my chest. It was the worst I had ever felt and it gave me a very bad feeling. The area that had been hurting for the past several weeks (on my upper chest/shoulder) was not hurting at all anymore. The pain had actually moved about 8 inches lower in a concentrated feeling mass. I got out of bed and took four more ibuprofen but even standing up didn’t feel ok. Every position, laying down, standing up, crouching, etc. hurt with excruciating pain. I started crying and called my mom, and she told me I needed to get to the Emergency Room and that she was on her way. I got there at around 1:00am.

I was taken back pretty much immediately and given Dilaudid and Morphine.

After answering a bunch of questions to narrow down what this might be, one of the doctors said that he was going to take my blood and run some sort of test to check for clotting and he presented me with the option to get a CT scan. He did heavily emphasize however that with the CT scan there was a chance of radiation poisoning, and clearly he wanted me to consider that in my decision – especially since there was very little chance I had a blood clot. I decided to get the CT scan despite the risk. Afterwards, the doctor came back very surprised with the information that I had clots in my lung. This whole time I had been texting my mom – who was frantic and on her way to me. When I found out it was a clot I told her what it was with relief. I legitimately did not realize how serious this was. Afterwards, I found out my mom didn’t tell me how serious it was until she got to me in person because she didn’t want to scare me. I ended up being admitted to a room and my boss and mom were there by very early morning.

Throughout the day we found out more about what had gone on. It was revealed that I had a pulmonary embolism and that now the right part of my lung was “riddled with clots.” Doctors explained this clot had started somewhere else in my body and had broken off into the pieces that traveled to my lungs. The ultra sound ruled my legs “clear of clots” but the doctor said that the clots could still be above the leg area. My mom and I are now very suspicious that the clots may be in my hips because now that I look back over the last eight months or so that I have been on the NuvaRing, I only began having arthritis=like symptoms in my hips a few weeks after I started the NuvaRIng.

I was also told that part of my lung had died from the blockages and that this damage is permanent. I was told by the ER doctor that the NuvaRing had to be discontinued immediately. Prior to the events of getting sick with what I thought was a virus, the only pain I recall was in my hip – and the pain was not severe therefore, I explained it away as having worked out. If I had been warned that pain could be in the hip or groin, I might have been more equipped to advocate for myself and not ended up in such a painful, agonizing life and death situation – BUT I WASN’T. I will be making an appointment tomorrow morning to push for more information and answers. In fact, I was given very little information at all.

My mom took me home and refused to let me be alone. I went to a follow=up appointment 2 days after I was released from the hospital and was told that I absolutely must discontinue use of the NuvaRing. I asked if this was what had happened to me and again, a doctor confirmed the NuvaRing was responsible.

Now the shock has worn off a little bit and I’m left with more questions; questions concerning the big picture of what exactly happened to me here and questions concerning why a drug that causes so many truly life threatening conditions in girls is ok to be distributed and sold in so many countries across the globe.

I was a young, healthy, not overweight, non=smoker and because of this I was led to believe I was not “at risk” for this to happen to me. In addition, I was not given enough information about how to recognize life=threatening injuries and what to do. If my doctors didn’t realize what was happening – how was I supposed to know? WHY DIDN’T I KNOW? Why did I have to come within moments of dying before the puzzle was put together?

I truly did not realize how serious this could have been for me. It didn’t hit me until my mom told me that she was talking to a man who had lost his daughter to complications with the NuvaRing. She said that he actually called me a survivor. And as I do more research I’m finding out why. And I’m mad about what is going on here. I never asked to be a Pulmonary Embolism Survivor.

I was supposedly very “low=risk” and yet I almost died, am a 20-year-old warfarin patient, have permanent lung damage, take narcotics daily to manage ongoing pain, suffer from exhaustion due to lack of lung function and side effects of drugs used to help ease the pain, ongoing medical treatment, low stamina and have been emotionally traumatized through this whole ordeal. That’s not including the excruciating pain I was subjected to that went undetected because everyone assumed there was such a small chance I could have a PE.

The NuvaRing is dangerous. It’s deadly. It should NOT be given to people when there are safer alternatives and no amount of injuries or death should be considered “acceptable” when people haven’t been properly informed of the risks – which are deadly and leave women so little opportunity to save themselves from permanent damage or death. If more clear information had been given to me, I never would have chosen this product and will forever question an “FDA approved” product’s safety as long as the NuvaRing is considered safe by the FDA.

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