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Help Factor V hetereozygous & estrogen? Help Factor V hetereozygous & estrogen?

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  #1  
Unread 11-13-2007, 11:59 AM
Help Factor V hetereozygous & estrogen?

HELP!!!! I am scheduled for a TLH 12/10 for endometrosis, dysfunctional uterine bleeding, as well as minor prolapse issues. Due to the endometriomas on one ovary & "cysts - likely endometriomas" on the other ovary, my surgeon wants to remove both ovaries (I am 43 & I have a history of hypertension, heteroyzous for Factor V, Undifferentiated connective tissue disease, & hypothyroidism) My surgeon feels it is not a contraindication for me to take estrogen (he will prescribe it), but other specialities (urogyne, cardiologist, hemetologist) said Factor V is a contraindication for HRT. The surgeon who is also an "endo expert" stated the estrogen he would prescribe is "a hell of a lot less than my ovaries produce now" & told me I run the risk of future complications if I do not remove both ovaries now. My biggest fear is if I do take HRT, I am worried I might have an event (MI, stroke - my 40 year brother had an MI last year & my Mom has heart disease) I just saw my PCP for preop medical clearance & discussed this with him as well .... he feels it would be OK to take HRT as everything in medicine is "not black & white."
Any suggestions would be most appreciative - I am not sleeping & consumed by what to do ... almost to the point of canceling my surgery...
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  #2  
Unread 11-13-2007, 03:42 PM
Help Factor V hetereozygous & estrogen?

I am responding because I have seen this issue discussed before, over in the No Ovaries, No Hormone Desert Oasis forum (see Hormone Central) on this site. Unfortunately I can't find any of those specific threads at the moment, but hopefully one of our hostesses, Catherine, will come along. I believe she has this condition or a similar one.

You are right, this is a huge issue and not one to take lightly. From what I have read, having heteroyzous for Factor V is a contraindication for hrt. Here is an article I found that discusses this:
http://www.genome.gov/15015167

  Quote:
The use of hormones, such as oral contraceptive pills (OCPs) and hormone replacement therapy (HRT), including estrogen and estrogen-like drugs) taken after menopause, increases the risk of developing DVT and PE. Healthy women taking OCPs have a three- to four-fold increased risk of developing a DVT or PE compared with women who do not take OCP. Women with factor V Leiden who take OCPs have about a 35-fold increased risk of developing a DVT or PE compared with women without factor V Leiden and those who do not take OCPs. Likewise, postmenopausal women taking HRT have a two- to three-fold higher risk of developing a DVT or PE than women who do not take HRT, and women with factor V Leiden who take HRT have a 15-fold higher risk. Women with heterozygous factor V Leiden who are making decisions about OCP or HRT use should take these statistics into consideration when weighing the risks and benefits of treatment.
Blood clots are a rare but possible side effect of hrt as it is, and there are several women here who have gotten blood clots from taking hrt (again see the forum above I mentioned). I just recently had to have an ultrasound on my right leg due to charlie horse cramping I have had in my calf for quite some time, but thankfully it was not a blood clot. I have been on hrt for a little over two years. Not trying to scare you but it is a possibility regardless of how much estrogen is in hrt compared to our ovaries.

Also, your history of endometriosis is another red flag for taking hrt, at least right away. As you probably know, a hysterectomy is not a definitive cure for endometriosis (I am surprised your endometriosis surgeon hasn't discussed this possibility with you), even with removal of ovaries, and endometriosis can continue to feed on the estrogen in your hrt.

On the other hand, estrogen is important at your age for protecting your bones, protecting against vaginal atrophy, and other problems. There are ways around using hrt to protect against these things and to help with menopausal symptoms, although they may or may not be as effective. Personally I tried going without hrt for several weeks due to continuing abdominal pain and I couldn't do it. I was a basket case (plus I now have osteoporosis so need the protection). However, I was only 33 and am fairly small and thin so my body does not make a lot of estrogen on its own. You may want to visit the no ovaries no hormone forum to get an idea of what others are doing who choose not to use hrt. Also discussing with a doctor possible non hormonal agents to help with surgical menopause would be wise as well to help you prepare ahead of time in case it comes to that. Even some non hrt herbal supplements are contraindicated for factor V. Here is an article about surgical menopause and hrt/no hrt options also:
https://www.hystersisters.com/vb2/view_menopause.htm

Also, I would be a little leary of a doctor that made a comment that "I run the risk of future complications if I do not remove both ovaries now". I say this because I had both ovaries removed due to endometriomas on them and have had many complications arise because of having my ovaries removed. Unless you have ovarian cancer you do have time to explore this option and weigh the risks of keeping versus losing them, especially with your heteroyzous for Factor V. Maybe another opinion with a different endometriosis specialist would help? I really feel for you because you are in a tough spot! I hope someone else comes along who has had this problem and can give you some more ideas! Good luck with everything!
  #3  
Unread 11-14-2007, 07:12 AM
Help Factor V hetereozygous & estrogen?

Thank you so much for all your valuable info. I am new to this website & still learning how to navigate, so I will definetely look for the No Ovaries, No Hormone Dessert Oasis forum. It just amazes me how "board certificated physicians" can be so different in their opinions & recommendations. Recently I attended a gyne conference & one of the speakers was a "endo expert" from another state. I discussed my situation with him & he practically repeated verbatim what my current gyne ... the so called "endo expert" (whom I had been referred to after consulting with 2 gynes, 1 NP colleague & a urogyne) Supposedly he is the "best" where I live .... but I'm beginning to have other thoughts ...
I appreciate all the time you took to reply & will look for those forums. Best of luck to you .... it sounds as if you have been through a lot too. Take care
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  #4  
Unread 11-14-2007, 03:15 PM
Help Factor V hetereozygous & estrogen?

Hey, I just found a few old posts talking about a similar situation as yours (only the women already had their hysterectomies). Just thought you would be interested.

https://www.hystersisters.com/vb2/sho...d.php?t=289699 (scroll down to surferbabes post in this thread for an article of interest)
https://www.hystersisters.com/vb2/sho...d.php?t=297694
https://www.hystersisters.com/vb2/sho...d.php?t=286843
https://www.hystersisters.com/vb2/sho...d.php?t=283619

Hope this helps!
  #5  
Unread 11-15-2007, 05:52 AM
Help Factor V hetereozygous & estrogen?

Thank you so much ... you have been so helpful & I am most appreciative!
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