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Factor V Leiden and no HRT Factor V Leiden and no HRT

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  #1  
Unread 09-11-2011, 01:31 PM
Factor V Leiden and no HRT

Hi,

I am going to be having a total hysterectomy (including cervix and ovaries) sometime in October. It will be a daVinci Hysterectomy. I am Factor V Leiden and, although I've never had a blood clot, it runs in the family and my aunt had a DVT after her hysterectomy in 1994. So, I am meeting with a Hematologist for the first time this week. I will also be meeting with my Gynocologist on that same day to discuss surgery and hopefully identify a date.

I have a few questions before I go to these appointments:

What precautions do I need to take before/after surgery? What questions should I be asking the Hematologist?

Is the daVinci surgery the best for someone with Factor V Leiden -- from a bleeding/clotting standpoint?

Is it true that I will not be able to take any HRT after my ovaries are removed? What, if any, are the natural alternatives to HRT and do they work?

If there are no natural alternatives that work, how do you manage without HRT? How have the menopause symptoms been for you?

I would really be interested in hearing from anyone who is Factor V Leiden and has had a total hysterectomy (ovaries removed).

Thanks,

Beth
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  #2  
Unread 09-11-2011, 03:04 PM
Re: Factor V Leiden and no HRT

I have Leiden as well. I had a DVT and several pulmonary emboli a few years ago. I have continued to take birth control because of my endometriosis, but in order to do so, I must be on Coumadin (blood thinner) for life. My hemotologist, general doc and ob/gyn have all conversed and agreed that hormones are ok as long as I take the Coumadin. So, I would suggest that you ask if that is possible. My hyster is scheduled for the end of November (for work reasons). I have not had pre op appt yet, but my gyn did say he'd likely do a LAVH. I may still have TAH. My concern, and what I would ask if I were you, is what surgery will cause the least amount of time on the OR table because that will help with clotting. I know that I will wear the pressure leg machine for the first night in the hospital and I was told that I will likely spend an extra day or two in the hospital. My doc said it would be necessary because I'd need to be on IV blood thinners. I do intend to ask which surgery is best as well. I know TVH would be the shortest surgery, but also has the hardest recovery and we cannot lie in bed too much with clotting possibilities. Hope this helps. Let me know how it goes since your surgery will be before mine.
  #3  
Unread 09-11-2011, 03:45 PM
Re: Factor V Leiden and no HRT

Thanks, Tennessee! Btw, I used to live in Nashville and LOVED it... I'm in PA now.

The October timeframe is just a guess. I went to a new gynecolgist a few weeks ago, and really liked him. We discussed surgery, and he seemed to be in agreement with all that I was saying, but he wanted to do a biopsy first to rule out uterine cancer (thankfully, it was "normal") and then he wanted to meet with me in two weeks. That will be this Thursday. I asked him how soon I could have the surgery, and he said October.

That's interesting about the Coumadin... I will have to ask about that!

I will also ask about which surgery is best and will check with the Hematologist as well. With the daVinci surgery, it would be longer time in the OR but would be less bleeding. I think TAV would take shorter amount of time but also produce more bleeding? I don't know! This is all new to me and I will have to talk with both doctors about it. I do know that my gyno said that he had worked with Factor V Leiden patients before and had successfully done the daVinci surgery, so we'll see!

Thanks so much for your advice! I am collecting notes for my appointments on Thursday!

Beth
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  #4  
Unread 09-11-2011, 04:03 PM
Re: Factor V Leiden and no HRT

I also have Factor V. I have not had any issues or even do aspirin therapy. My mom and sister has it, she has had DVT in her earlier years and that when I got tested.

I go into Pre Op Test Monday and my Dr. Is aware. I am having a TAH on Sept 22nd due to a very large fibroid. and this Factor V has me a bit worried.


I will be sure to bring this up tomorrow. I dis not know I may be in hospital longer, but I guess I will get more details tomorrow and let you all know.

  #5  
Unread 09-11-2011, 04:05 PM
Re: Factor V Leiden and no HRT

I just wanted to wish you all the best!! I don't have Factor V, but my sister-in-law (hubby's sister) does, and I have other friends with bleeding disorders as well. You are all in my thoughts and prayers for uneventful surgeries and rapid, uncomplicated recoveries.
  #6  
Unread 09-11-2011, 04:09 PM
Re: Factor V Leiden and no HRT

Machchic,

It is most definitely something you should talk to your doctor about and maybe even consult with a Hematologist. My mom's side of the family is the one with the Factor V Leiden. My mom tested positive but didn't take any special precautions because she had never had a blood clot. But she died suddenly at age 70 -- it was either a heart attack or a pulmonary embolism. I'm not sure if Factor V Leiden was the cause, but it made me want to take extra precautions.

From what I've read, there is something they do before surgery and then after surgery. So, please talk to your doctor about it!

Factor V Leiden is not supposed to be very common, but when I read that so many women who have Fibroids also have Factor V Leiden mutation, it makes me wonder if there is some connection!

Beth
  #7  
Unread 09-11-2011, 05:00 PM
Re: Factor V Leiden and no HRT

I believe my doc is being extra cautious by keeping me at the hospital longer because of my previous history with clots. When they found the ones in my lung, I was having trouble breathing. I certainly don't need a repeat of that. I have had back pain, somewhat due to endo, for several years now. I've had epidural injections many times and I always have to go off the Coumadin before these procedures. I know that for one week before my hyster in Nov, I will go off the Coumadin. There is an injectionable med called Lovanox that I often take for a few days because it doesn't stay in the blood for more than 12 hours. I will likely take this for a few days, but I'll have to be completely off the thinners for at least 3-4 days. This is a risk, but I know the signs of clots now, so I have to risk it. After surgery I'll have Heparin until the Coumdin works itself back into my system. This is why I was told I'd have to stay an extra day or two. The only thing I am unsure of is the type of surgery. I guess I'll learn more at my pre op appt early in November. I have a cousin who is Factor V positive and my oldest son recently tested positive as well. Those are my only family connections. I have learned a lot about it since my diagnosis 5 years ago. You can have surgery even with Leiden, but you just have to be more aware. I haven't asked my doc much about HRT, but since I have been allowed to take the continuous birth control, I assume the same will be true of HRT...take it as long as I take the Coumadin. One last note, I doubt that you would be given Coumadin without having a clot prior. It has its own risks and requires frequent blood work at least once or twice per month.
  #8  
Unread 09-11-2011, 08:02 PM
Re: Factor V Leiden and no HRT

I have the Factor V Leiden gene, but didn't know it before my surgery. I ended up with a DVT at 3 weeks post op and was put on coumadin for a year. My doctor refuses to let me take hormones.

Everything seemed fine for a few years, but for the past several years I have so many aches and pains. My back hurts, my knees and even my feet hurt. I'm not sure if this is because I can't take hormones, but my feeling is yes it is. If I could take HRT I'd probably feel much better.

If you don't absolutely need your ovaries removed, my suggestion would be to keep them if you can.
  #9  
Unread 09-11-2011, 09:09 PM
Re: Factor V Leiden and no HRT

It was my hemotoligist who said hormones are fine as long as the blood medication is used. I am still debating an ovary to keep.
  #10  
Unread 09-12-2011, 05:22 AM
Re: Factor V Leiden and no HRT

My concern with keeping ovaries is the risk for ovarian cancer. I had thyroid cancer 20 years ago and my best friend almost died from ovarian cancer! I just don't want to take that risk. Also, from what I've read, after the uterus is removed, if ovaries are kept, they may only function for 1-3 years anyway. I just don't see the point of keeping them with the risks involved.

Tennessee, what are the risks of being on Coumadin permanently while taking HRT?
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