Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hello Everyone,
I am very new to these forums; I do not usually post my medical ailments online but I seem to be in a very tough situation with conflicting problems and am hoping to seek some advice- or have other users share their experiences with similar situations. My story is somewhat of a long one; and I appreciate all feedback as I have yet to come across any individuals in a similar situation such as myself.
My mother has been diagnosed with factor 5 recently after we switched to a new doctor; 4 or so years after a major 5 hour surgery resulting in two small clots which traveled to her lungs. Seeing there was talk I took would need some possible major surgery in the future (TMJ) I decided I would get tested. I am also neurotic; so not knowing was eating me away anyways. I have also been on hormonal birth control pills in treatment for severe PMDD for the past 8-9 years which is why this issue is so concerning for me. Anyways- the test came back positive. My whole life I have suffered from severe anxiety and the primary fear of blood clots (since I was very young). It is not so much the factor 5 I am concerned about; more about what that now means for the severe PMDD and the medication I have been on to treat it.
I tried every non-hormonal, natural- you name is treatment for the pain back when I was diagnosed at 14. I missed so much school; my GPA went from a 4.0 to a 2.1 and my OBGYN put me on the pill as a last resort because I hated taking medications. 13 days every month I suffer in agony; excruciating pain, cannot walk- vomiting, high fevers and migraines- missed school to the point I could not take it anymore. Needlessness- I have been on these pills for many years because of this horrible disorder known as PMDD. My doctor referred me to multiple other specialists about my situation- and each time I get blank expressions on what to do. All of my doctors (OBGYN, Primary and Hematologist) agree my PMDD will not go away unless I decide on having children (I am not in that position yet), have a hysterectomy, stay on pills or go through menopause. Or I can suck it up deal with the pain which they all felt is unacceptable. Those were the options given to me. My OBGYN is not too concerned with my newly diagnosed Factor 5 and my hematologist says it's a catch 22 and 13 days every month is unacceptable to be so ill especially with me having a full time job. He says I need to look at risks and benefits in such a situation and feels that I should not worry over this and instead monitor my body and look for warning signs- and use common sense practices (ie- move around at work, precautions with surgery, etc). He recommends me once a year to get a routine check up/ ultrasound for clots because of the pills I am on providing I remain on them and/or switch to another. He says usually he recommends all his patients to stay away from the pill who have factor 5- but feels in my given situation that really is not an option due to the PMDD being so severe and life impacting. I am a very, very anxious person so I cannot sit still- I move around regardless as my mind is always going. I also have scoliosis of the lower spine and often get pinched nerves and strange sensations- which doesn't add to this matter of leg sensations. I am also a toe-walker; which probably only adds to the leg problem anxiety.
I have become paranoid about this. I am petrified to come off the pills due to the excruciating pain and working full time; I will most likely lose my job since I cannot work from home. Yet I am also scared to now be on them due to this new information that I have factor five. As my hematologist stated- I am a carrier (I have the lesser severe factor 5). I have done a lot of digging into this factor 5 as well as my family genetics on this to try determine my risks- It also seems the clots in my relatives occur with major surgeries (4-5 hours). All pregnancies have been fine as well as minor surgeries (1-3 hours). My relatives also had hormonal treatment for menopause and birth control with no problems. My relatives which have reported blood clots did not know that had factor five and found out after developing a clot after a major surgery later on in life. I wanted my risk factors to be evaluated so I can take precautions if I have to continue on these pills- but apparently there is no test for that. I have had a couple surgeries already with no problems thankfully; but I am now much more aware seeing I have a surgery planned in the near future which might be a major one.
So here I am trying to figure out what the best thing I could possibly do in this situation would be. It has been bugging me for awhile; and I recently called up my primary care doctor to re-evaluate my situation and ask for the ultrasounds and see what she recommends after I have spoke with all of these other doctors. I said I am open to any other options as I dislike living my life day to day in fear of these kinds of things- every time I get an odd sensation in my leg now I think blood clot. It has been consuming me to the point I cannot sleep at night anymore. Yet at the same token- I cannot imagine my life without being on these pills. I am able to live a relatively normal life minus some nasty migraines a few times a year. I have been told there are no other treatments for the PMDD pain; most PMDD medications which are non-hormonal are for depression and the emotional aspect of it which I do not have. I was told I could take a 80mg aspirin a day to help out the risk issue as well if I was worried.
Has anybody had a similar diagnosis? Or severe hormonal problems which conflicted with your factor 5? I just want to make sure I am doing what I can to help this situation- to be aware and seek other options if they arise. Sadly- so far none have turned up. If anybody has found an alternative option to hormonal pills for PMDD on my level- please let me know! I have to live my life day to day from pill to pill and I really dislike it. Knowing I now have factor 5 made things a whole lot worse and I am no closer on finding a safer solution.
I appreciate all help/ advice/ feedback as I am at a stand still. I had read and heard horror stories or people dying from the combination of hormonal pills and factor 5; yet I have also heard of people never knowing they had factor 5 until something arose later on in life (ie- major surgery). I feel torn and confused as to what I should do or if there is a special kind of doctor I should see for my given situation.
Thank you for reading my story and situation.
I am very new to these forums; I do not usually post my medical ailments online but I seem to be in a very tough situation with conflicting problems and am hoping to seek some advice- or have other users share their experiences with similar situations. My story is somewhat of a long one; and I appreciate all feedback as I have yet to come across any individuals in a similar situation such as myself.
My mother has been diagnosed with factor 5 recently after we switched to a new doctor; 4 or so years after a major 5 hour surgery resulting in two small clots which traveled to her lungs. Seeing there was talk I took would need some possible major surgery in the future (TMJ) I decided I would get tested. I am also neurotic; so not knowing was eating me away anyways. I have also been on hormonal birth control pills in treatment for severe PMDD for the past 8-9 years which is why this issue is so concerning for me. Anyways- the test came back positive. My whole life I have suffered from severe anxiety and the primary fear of blood clots (since I was very young). It is not so much the factor 5 I am concerned about; more about what that now means for the severe PMDD and the medication I have been on to treat it.
I tried every non-hormonal, natural- you name is treatment for the pain back when I was diagnosed at 14. I missed so much school; my GPA went from a 4.0 to a 2.1 and my OBGYN put me on the pill as a last resort because I hated taking medications. 13 days every month I suffer in agony; excruciating pain, cannot walk- vomiting, high fevers and migraines- missed school to the point I could not take it anymore. Needlessness- I have been on these pills for many years because of this horrible disorder known as PMDD. My doctor referred me to multiple other specialists about my situation- and each time I get blank expressions on what to do. All of my doctors (OBGYN, Primary and Hematologist) agree my PMDD will not go away unless I decide on having children (I am not in that position yet), have a hysterectomy, stay on pills or go through menopause. Or I can suck it up deal with the pain which they all felt is unacceptable. Those were the options given to me. My OBGYN is not too concerned with my newly diagnosed Factor 5 and my hematologist says it's a catch 22 and 13 days every month is unacceptable to be so ill especially with me having a full time job. He says I need to look at risks and benefits in such a situation and feels that I should not worry over this and instead monitor my body and look for warning signs- and use common sense practices (ie- move around at work, precautions with surgery, etc). He recommends me once a year to get a routine check up/ ultrasound for clots because of the pills I am on providing I remain on them and/or switch to another. He says usually he recommends all his patients to stay away from the pill who have factor 5- but feels in my given situation that really is not an option due to the PMDD being so severe and life impacting. I am a very, very anxious person so I cannot sit still- I move around regardless as my mind is always going. I also have scoliosis of the lower spine and often get pinched nerves and strange sensations- which doesn't add to this matter of leg sensations. I am also a toe-walker; which probably only adds to the leg problem anxiety.
I have become paranoid about this. I am petrified to come off the pills due to the excruciating pain and working full time; I will most likely lose my job since I cannot work from home. Yet I am also scared to now be on them due to this new information that I have factor five. As my hematologist stated- I am a carrier (I have the lesser severe factor 5). I have done a lot of digging into this factor 5 as well as my family genetics on this to try determine my risks- It also seems the clots in my relatives occur with major surgeries (4-5 hours). All pregnancies have been fine as well as minor surgeries (1-3 hours). My relatives also had hormonal treatment for menopause and birth control with no problems. My relatives which have reported blood clots did not know that had factor five and found out after developing a clot after a major surgery later on in life. I wanted my risk factors to be evaluated so I can take precautions if I have to continue on these pills- but apparently there is no test for that. I have had a couple surgeries already with no problems thankfully; but I am now much more aware seeing I have a surgery planned in the near future which might be a major one.
So here I am trying to figure out what the best thing I could possibly do in this situation would be. It has been bugging me for awhile; and I recently called up my primary care doctor to re-evaluate my situation and ask for the ultrasounds and see what she recommends after I have spoke with all of these other doctors. I said I am open to any other options as I dislike living my life day to day in fear of these kinds of things- every time I get an odd sensation in my leg now I think blood clot. It has been consuming me to the point I cannot sleep at night anymore. Yet at the same token- I cannot imagine my life without being on these pills. I am able to live a relatively normal life minus some nasty migraines a few times a year. I have been told there are no other treatments for the PMDD pain; most PMDD medications which are non-hormonal are for depression and the emotional aspect of it which I do not have. I was told I could take a 80mg aspirin a day to help out the risk issue as well if I was worried.
Has anybody had a similar diagnosis? Or severe hormonal problems which conflicted with your factor 5? I just want to make sure I am doing what I can to help this situation- to be aware and seek other options if they arise. Sadly- so far none have turned up. If anybody has found an alternative option to hormonal pills for PMDD on my level- please let me know! I have to live my life day to day from pill to pill and I really dislike it. Knowing I now have factor 5 made things a whole lot worse and I am no closer on finding a safer solution.
I appreciate all help/ advice/ feedback as I am at a stand still. I had read and heard horror stories or people dying from the combination of hormonal pills and factor 5; yet I have also heard of people never knowing they had factor 5 until something arose later on in life (ie- major surgery). I feel torn and confused as to what I should do or if there is a special kind of doctor I should see for my given situation.
Thank you for reading my story and situation.
All that said, I think you're worrying more than you need to. It sounds to me like your risks are pretty low, but that you're probably just a worrier by nature (speaking as a fellow worrier). You're doing everything you can for it already. The daily aspirin would probably help quite a bit. I have a friend with FVL, and she does the aspirin (she's never clotted) and swears by it, even after going through two pregnancies and several surgeries.
Honestly, your twinges and stuff sound totally normal. My guess is that you've probably had those before and just not noticed them because you weren't hyper-aware of the possibility of clotting. I get those in my good leg now, and there's not a doubt in my mind that they aren't clot-related. There's no way they are. They're just regular old body twinges. :-)