A couple months ago, on a Friday night in the wee hours of the morning I woke up in the most excruciating pain ever. Stooped over in pain, unsure of what was happening. . . I rushed to the bathroom. A few minutes more of feeling like someone was stabbing me in my ovaries and I decided to try and just go back to sleep. I figured I was having another ovarian cyst erupt and needed to just lay down and let it pass. . . But as I was leaving the bathroom I suddenly got hot, and my vision went blurry . . . and then black. I fainted.
I had only fainted once before and ironically it happened in the company of a doctor. And to be honest I didn't even realize it had happened, so this kind of freaked me out. I woke up to my overly concerned husband towering over me, asking me if I was OK. He had woken up to the sound of me crashing into the door and falling to the floor. I, still being in so much pain AND in a state of shock and confusion, tried to move and literally couldn't get off the floor. My husband had to help me get back into bed.
My own stubbornness and exhaustion from other trips to the ER left me putting off going to the DR's until Monday. I had been hospitalized three times prior for ovarian cysts that caused excessive bleeding, so this wasn't anything new to me. By then, the pain had subsided (slightly) but it was still hot and tender to the touch and causing me A LOT of discomfort. . . I could literally feel the fluid moving around in my stomach. My family encouraged me to call the Dr. . .and it later would be confirmed I was having another ovarian cyst that was erupting and that I probably fainted from sudden loss of blood.
I was seen by the gynecologist by Monday at 11 (unfortunately not by my regular gyno) and was home trying to get some rest by noon. While I was at the appointment we went over ALL my medical history of life with a storage pool disorder. I got an ultrasound which showed I had pools of blood in BOTH ovaries, one side more than the other! To which she concluded, I had just gone through one on the side that was hurting BUT that I also had a cyst erupt the month before. . . which explained the pool of blood in the other ovary. I was given a bunch of pain pills which I hate and opt not to take or can't take because they thin out my blood . . . and she sent me on my way! I was advised to take it easy, not lift anything heavy until the pain resided (I returned to work the next day with 24 preschool students)AND THAT WAS IT!
I had to reach out to my hematologist and ask if I should do a blood draw to see where my levels were at and it took her 4 days to get back to me. . . BY that time I was feeling better and over it all and I never got my levels checked.
The Dr's were always super concerned about the amount of blood I was losing prior to this experience, but that was before being diagnosed with a platelet storage pool disorder. Since my diagnosis several years ago I know I've suffered through other cysts erupting and I find it odd that they can vary so much and that the reactions from different physicians can differ so much as well. Some can land me in the hospital, cause me to faint, and some I can fight through the pain. Some cause Dr's to monitor my levels for several days. . some they don't ask to check them at all.
Shortly after all of this happened. . . I went to HFA Symposium in St.Louis. It was there that I met other women experiencing a lot of the same inconstancies with their health care and diagnosis. I even met a mother who's daughter had gone through something similar to me. . Unfortunately she received injuries from falling as she fainted and lost so much blood that she wound up in the hospital for days trying to correct her blood loss. . . She too had a storage pool disorder.
SO are we downplaying PSPD? Labeling it as mild to moderate when things like an ovarian cyst can land us in the ER with an incredible amount of blood loss? Are women in general, that are being diagnosed with rare bleeding disorders being swept under the carpet for lack of knowledge and understanding about what they are going through? I've said it once and I'll say it again, most that are diagnosed with a storage pool disorder do not have a treatment plan that we know will work in a time of need. Even something as small as an ovarian cyst can be scary and even land you in the hospital with a substantial amount of blood loss. So we've got to come together and keep sharing those stories and making those connections. The patients seem to know more than the DR's in most scenarios with women bleeders and the only the way that's happening is by people being wiling to share their stories, good and bad, big and small.
I had only fainted once before and ironically it happened in the company of a doctor. And to be honest I didn't even realize it had happened, so this kind of freaked me out. I woke up to my overly concerned husband towering over me, asking me if I was OK. He had woken up to the sound of me crashing into the door and falling to the floor. I, still being in so much pain AND in a state of shock and confusion, tried to move and literally couldn't get off the floor. My husband had to help me get back into bed.
My own stubbornness and exhaustion from other trips to the ER left me putting off going to the DR's until Monday. I had been hospitalized three times prior for ovarian cysts that caused excessive bleeding, so this wasn't anything new to me. By then, the pain had subsided (slightly) but it was still hot and tender to the touch and causing me A LOT of discomfort. . . I could literally feel the fluid moving around in my stomach. My family encouraged me to call the Dr. . .and it later would be confirmed I was having another ovarian cyst that was erupting and that I probably fainted from sudden loss of blood.
I was seen by the gynecologist by Monday at 11 (unfortunately not by my regular gyno) and was home trying to get some rest by noon. While I was at the appointment we went over ALL my medical history of life with a storage pool disorder. I got an ultrasound which showed I had pools of blood in BOTH ovaries, one side more than the other! To which she concluded, I had just gone through one on the side that was hurting BUT that I also had a cyst erupt the month before. . . which explained the pool of blood in the other ovary. I was given a bunch of pain pills which I hate and opt not to take or can't take because they thin out my blood . . . and she sent me on my way! I was advised to take it easy, not lift anything heavy until the pain resided (I returned to work the next day with 24 preschool students)AND THAT WAS IT!
I had to reach out to my hematologist and ask if I should do a blood draw to see where my levels were at and it took her 4 days to get back to me. . . BY that time I was feeling better and over it all and I never got my levels checked.
The Dr's were always super concerned about the amount of blood I was losing prior to this experience, but that was before being diagnosed with a platelet storage pool disorder. Since my diagnosis several years ago I know I've suffered through other cysts erupting and I find it odd that they can vary so much and that the reactions from different physicians can differ so much as well. Some can land me in the hospital, cause me to faint, and some I can fight through the pain. Some cause Dr's to monitor my levels for several days. . some they don't ask to check them at all.
Shortly after all of this happened. . . I went to HFA Symposium in St.Louis. It was there that I met other women experiencing a lot of the same inconstancies with their health care and diagnosis. I even met a mother who's daughter had gone through something similar to me. . Unfortunately she received injuries from falling as she fainted and lost so much blood that she wound up in the hospital for days trying to correct her blood loss. . . She too had a storage pool disorder.
SO are we downplaying PSPD? Labeling it as mild to moderate when things like an ovarian cyst can land us in the ER with an incredible amount of blood loss? Are women in general, that are being diagnosed with rare bleeding disorders being swept under the carpet for lack of knowledge and understanding about what they are going through? I've said it once and I'll say it again, most that are diagnosed with a storage pool disorder do not have a treatment plan that we know will work in a time of need. Even something as small as an ovarian cyst can be scary and even land you in the hospital with a substantial amount of blood loss. So we've got to come together and keep sharing those stories and making those connections. The patients seem to know more than the DR's in most scenarios with women bleeders and the only the way that's happening is by people being wiling to share their stories, good and bad, big and small.
Written by,
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
For more on me and my health issues please check out:
- "I'm sorry you shouldn't have more kids": http://atouchofscarlett.blogspot.com/2013/09/sorry-you-shouldn-have-any-more-kids.html
- When life threatening situations become more life threatening: http://atouchofscarlett.blogspot.com/2013/11/when-life-threatening-situations-become.html
- Momma's Turn: http://atouchofscarlett.blogspot.com/2014/01/momma-turn.html
- Ovarian Cyst's are the pits: http://atouchofscarlett.blogspot.com/2015/05/lady-problems.html
- Help Wanted, Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html
- Too Taboo to talk about: http://atouchofscarlett.blogspot.com/2014/08/too-taboo-to-talk-about.html
- I am PSPD: http://www2.bleedfree.com/bleedfree-blog/i-am-pspd
- Taking Care of the Caregiver: http://atouchofscarlett.blogspot.com/2015/10/infusing-love-taking-care-of-patient.html
- How turning 35 changed my life: http://atouchofscarlett.blogspot.com/2014/01/turning-35-changed-my-life.html
Written by,
Kari Peepe
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
For more on me and my health issues please check out:
- "I'm sorry you shouldn't have more kids": http://atouchofscarlett.blogspot.com/2013/09/sorry-you-shouldn-have-any-more-kids.html
- When life threatening situations become more life threatening: http://atouchofscarlett.blogspot.com/2013/11/when-life-threatening-situations-become.html
- Momma's Turn: http://atouchofscarlett.blogspot.com/2014/01/momma-turn.html
- Ovarian Cyst's are the pits: http://atouchofscarlett.blogspot.com/2015/05/lady-problems.html
- Help Wanted, Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html
- Too Taboo to talk about: http://atouchofscarlett.blogspot.com/2014/08/too-taboo-to-talk-about.html
- I am PSPD: http://www2.bleedfree.com/bleedfree-blog/i-am-pspd
- Taking Care of the Caregiver: http://atouchofscarlett.blogspot.com/2015/10/infusing-love-taking-care-of-patient.html
- How turning 35 changed my life: http://atouchofscarlett.blogspot.com/2014/01/turning-35-changed-my-life.html
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