Post by Emily on Nov 27, 2012 0:09:37 GMT -5
Hi everyone, I'm Emily, I'm 24 and live in St. Louis, Missouri. I work as a research librarian in a medical library full time and am also a full time graduate student, studying Library Science. Here's my story!
In my mid teens, I started experiencing painful, heavy periods. It took a while to get my conservative mother to let me get on birth control pills, but after many days curled in the fetal position, I got on them at 16. I tried a few different pills, but the very best results I ever got were periods 6 days long, fairly heavy, and only slightly less painful. I took what I could get.
Fast forward to April, 2012 when I was 23. My oldest sister (I have FOUR sisters) had a pulmonary embolism at the young age of 27. She does not smoke and is very active. She's now fine, thank God! The five of us all got tested for clotting factors and we discovered that 4 out of 5 of us have the MTHFR mutation, with myself and my sister who had the PE having 2 copies of the mutation, lucky us! I did some research and got the opinions of my GP, gyno, neurologist, and a hematologist. My GP, the hematologist, and the neurologist all told me that I could not take hormones ever again (as a side note, I also suffer from non-traditional migraines with aura, confusion, and throat constriction, hormones are another no-no for that condition as well, the neurologist was mad that I was on the pill in the first place ).
After I sent the blood work to my gyno, she talked to me like I was stupid and tried to convince me that I can still be on hormones and that no one else knows what they are talking about. She refused to insert a copper (no hormones) IUD because I haven't had any kids yet. Against her advice, I stopped taking birth control pills at the end of my pill pack and immediately started having horrible side effects.
I had alternating sharp and dull pain in my lower pelvis, especially on my left side, with the pain traveling down my legs, along with a pulling feeling in my hips. I also had burning and stabbing pain in my lower back with nausea and even vomiting 1-2 days before my actual bleeding started. I was tired all the time but could not get to sleep at night without Tylenol PM, but even with that I was in pain and waking up every 1-2 hours. My bleeding would be around 9 days long, with 3 of those days so heavy that I had to set an alarm every 2 hours during the night to change both a super tampon and overnight pad. During those days I felt especially tired/lightheaded/shaky and often had to call in to work/miss class because of the pain. I tried Advil, Tylenol, Motrin, Aleve, mefenamic acid, and Midol with little to no relief
I decided to go to Planned Parenthood to get the copper IUD in August while still experiencing these symptoms. The period after that was inserted was about the same, maybe a day longer than usual. Still have the IUD.
In September, I went back to the doctor who wanted me on the pill because I knew that what I was experiencing was not normal. She ordered a trans-vaginal ultrasound, which was performed by a tech. I then went to the exam room, where she barely even walked in the room to talk to me, she was mad that I had gotten the IUD. She said that my IUD was in perfect position, but everything that I was experiencing could be linked to the IUD. I tried to explain that I had a good 3 months of these symptoms BEFORE the IUD, but she had stopped listening. She told me that she saw evidence of endo on my ovaries from the ultrasound, but did not perform an exam on me or offer me options other than the pill. Needless to say, I am very, very frustrated!!
Now, it is nearly 3 months after that debacle and I can't take the chronic pain anymore, not to mention I can't afford to miss 1-2 days of class and work every month. I am not formally diagnosed with endo, but my doctor says that she thinks I have in on my ovaries. I have an appointment scheduled with a specialist all the way in March (she books up fast) but am going to try my luck with another gyno in the same practice next week. I am counting down the days!
I have read through some of your stories and you are all strong women, I look forward to getting to know all/any of you. Any advice is welcome, as I feel like I am kind of in the dark!
In my mid teens, I started experiencing painful, heavy periods. It took a while to get my conservative mother to let me get on birth control pills, but after many days curled in the fetal position, I got on them at 16. I tried a few different pills, but the very best results I ever got were periods 6 days long, fairly heavy, and only slightly less painful. I took what I could get.
Fast forward to April, 2012 when I was 23. My oldest sister (I have FOUR sisters) had a pulmonary embolism at the young age of 27. She does not smoke and is very active. She's now fine, thank God! The five of us all got tested for clotting factors and we discovered that 4 out of 5 of us have the MTHFR mutation, with myself and my sister who had the PE having 2 copies of the mutation, lucky us! I did some research and got the opinions of my GP, gyno, neurologist, and a hematologist. My GP, the hematologist, and the neurologist all told me that I could not take hormones ever again (as a side note, I also suffer from non-traditional migraines with aura, confusion, and throat constriction, hormones are another no-no for that condition as well, the neurologist was mad that I was on the pill in the first place ).
After I sent the blood work to my gyno, she talked to me like I was stupid and tried to convince me that I can still be on hormones and that no one else knows what they are talking about. She refused to insert a copper (no hormones) IUD because I haven't had any kids yet. Against her advice, I stopped taking birth control pills at the end of my pill pack and immediately started having horrible side effects.
I had alternating sharp and dull pain in my lower pelvis, especially on my left side, with the pain traveling down my legs, along with a pulling feeling in my hips. I also had burning and stabbing pain in my lower back with nausea and even vomiting 1-2 days before my actual bleeding started. I was tired all the time but could not get to sleep at night without Tylenol PM, but even with that I was in pain and waking up every 1-2 hours. My bleeding would be around 9 days long, with 3 of those days so heavy that I had to set an alarm every 2 hours during the night to change both a super tampon and overnight pad. During those days I felt especially tired/lightheaded/shaky and often had to call in to work/miss class because of the pain. I tried Advil, Tylenol, Motrin, Aleve, mefenamic acid, and Midol with little to no relief
I decided to go to Planned Parenthood to get the copper IUD in August while still experiencing these symptoms. The period after that was inserted was about the same, maybe a day longer than usual. Still have the IUD.
In September, I went back to the doctor who wanted me on the pill because I knew that what I was experiencing was not normal. She ordered a trans-vaginal ultrasound, which was performed by a tech. I then went to the exam room, where she barely even walked in the room to talk to me, she was mad that I had gotten the IUD. She said that my IUD was in perfect position, but everything that I was experiencing could be linked to the IUD. I tried to explain that I had a good 3 months of these symptoms BEFORE the IUD, but she had stopped listening. She told me that she saw evidence of endo on my ovaries from the ultrasound, but did not perform an exam on me or offer me options other than the pill. Needless to say, I am very, very frustrated!!
Now, it is nearly 3 months after that debacle and I can't take the chronic pain anymore, not to mention I can't afford to miss 1-2 days of class and work every month. I am not formally diagnosed with endo, but my doctor says that she thinks I have in on my ovaries. I have an appointment scheduled with a specialist all the way in March (she books up fast) but am going to try my luck with another gyno in the same practice next week. I am counting down the days!
I have read through some of your stories and you are all strong women, I look forward to getting to know all/any of you. Any advice is welcome, as I feel like I am kind of in the dark!