Hormonal Birth Control/PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-23-2012, 03:41 PM
RowdyBliss RowdyBliss is offline
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Default Hormonal Birth Control/PWS

Hey gang! Been a while since I posted. A lot has happened.

First off - I'm getting married in June, to the guy I've been seeing for the past three years. Yay!

But this brings me, in a roundabout way, to my next point...

Just this past Monday, I went to my obgyn for my regular annual internal exam. Passed that with flying colors (good), but my doctor told me that she was no longer comfortable giving me hormonal birth control. She said that my PWS - which has darkened and become quite varicose since she last saw me (doctors who see us patients with huge PWSs seldom forget us!) - creates too much of a risk for clots in conjunction with hormonal birth control. I have been on some form of hormones for BC - pills, patch, and now Nuvaring - for 18+ years - and actually smoked during some of those years. I think I've been dodging a big, BIG bullet!!

Having to go off the hormones is okay news, really, because DFH and I are not planning on having children (at least not naturally - adoption is a very real possibility), so I'm going to go off the hormones and opt for sterilization.

But I'm still turning the whole clot thing around in my head... does anyone else know anything about hormones - either therapeutic or for birth control purposes - and its contraindications for folks with vascular abnormalities like PWSs? I seem to remember a story (maybe I read it here?) about someone whose affected leg was absolutely riddled with clots as the result of her pregnancy and the hormones that created, but when I did some poking around online, there wasn't much to read about it at that point.

Just curious to hear stories/anecdotes, as this seems to be a rather new standard.
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  #2  
Old 03-23-2012, 07:54 PM
missy missy is online now
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Hi and welcome back!

Congrats on the upcoming wedding. Remember to send a photo of the lovely bride and groom ... it goes with all my baby pics. I am so pleased for you.

I hear lots of stories or complaints from people with birthmarks (pws and venous malformations, too) and hormonal birth control. But I don't remember the story about a leg riddled with clots. Could that have been at birthmarks.com instead? They are more focused on pws, so perhaps that was it. But if you find it, let me know where.

Take care!!

Missy
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  #3  
Old 03-24-2012, 02:24 AM
abatie abatie is offline
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I don't have any real information on this but I do know that I have seen a lot of conversation on it. From what I have read that any hormones have an impact. I know that I read somewhere that girls with CMTC (which is what my daughter has) shouldn't be on birth control because of this risk. Now I do know that there is more likelihood of clots with CMTC cases than the normal population but I don't know enough about PWS to know if this is also true. I have given it some thought because of the impact that it may have on my daughter. I have to say though not too much thought because she is only 2 1/2. Hopefully doctors will have it all figured out by the time she needs it.
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  #4  
Old 03-24-2012, 04:33 PM
Donovan Donovan is offline
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Hi Abatie, My daughter has an AVM and she has an IUD (Mirena). It only contains progesterone as estrogen really affects vascular malformations. Since she started using it, she is not experiencing the same problems that she had when she was on the pill even though it was a progesterone only pill.
Hope that this helps.
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  #5  
Old 03-24-2012, 07:35 PM
kaykay kaykay is offline
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i've been on Yaz over a year now with zero problems. if anything, i don't know for sure, but my pws has not swelled up for almost a year, no fevers etc...growth of the pws has not accelerated as far as i can tell. no new problems. very very grateful and hope it stays that way cause not having to get up in the night to shower an change is something i have no desire to return to
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  #6  
Old 06-27-2012, 02:23 AM
sweet pea sweet pea is offline
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Quote:
Originally Posted by RowdyBliss View Post
Hey gang! Been a while since I posted. A lot has happened.

First off - I'm getting married in June, to the guy I've been seeing for the past three years. Yay!

But this brings me, in a roundabout way, to my next point...

Just this past Monday, I went to my obgyn for my regular annual internal exam. Passed that with flying colors (good), but my doctor told me that she was no longer comfortable giving me hormonal birth control. She said that my PWS - which has darkened and become quite varicose since she last saw me (doctors who see us patients with huge PWSs seldom forget us!) - creates too much of a risk for clots in conjunction with hormonal birth control. I have been on some form of hormones for BC - pills, patch, and now Nuvaring - for 18+ years - and actually smoked during some of those years. I think I've been dodging a big, BIG bullet!!

Having to go off the hormones is okay news, really, because DFH and I are not planning on having children (at least not naturally - adoption is a very real possibility), so I'm going to go off the hormones and opt for sterilization.

But I'm still turning the whole clot thing around in my head... does anyone else know anything about hormones - either therapeutic or for birth control purposes - and its contraindications for folks with vascular abnormalities like PWSs? I seem to remember a story (maybe I read it here?) about someone whose affected leg was absolutely riddled with clots as the result of her pregnancy and the hormones that created, but when I did some poking around online, there wasn't much to read about it at that point.

Just curious to hear stories/anecdotes, as this seems to be a rather new standard.
Yay, congrats!! Your story is very similar to mine. I'm getting married as well this summer(been with him the last 3 years) and can't use hormonal birth control, although for a different reason(have a Lymphatic malformation and it causes pain/makes it swell up). Lately I have been looking into a good birth control to use and will be seeing my doctor to talk about getting the IUD, which may work for me(hopefully, crossing fingers). The hormonal one is progesterone only, which doesn't seem to cause as many issues and there is also the copper IUD(non-hormonal) which may also work well. I haven't tried it yet, but hope that may be the answer for me to use.

There are more complications for people with birthmarks in regards to the use of hormonal contraception. Hormones effect multiple systems in the human body and there is an increased risk for blood clots if there is an abnormality in the cardiovascular system(body is more sensitive). Although, if you haven't had a blood clot over the many years you have used hormonal birth control, I would assume you are good and won't have issues, as long as you don't continue use. I do think it is better to be safe than sorry, so I wouldn't risk it with using hormonal birth control.
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  #7  
Old 07-01-2012, 03:48 AM
kaykay kaykay is offline
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congrats to both of you on getting married !

i've still not see any difference or dramatic changes while i'm been on the pill. on Yaz almost 2 years and the only thing is that i may had gain a little weight gradually (i've been this weight before BCP) but then my diet has been up and down, aches and pains, arthritis mostly and dog bites, i haven't excerised much either. trying to get back into that now.


I asked a doctor in my health clinic about getting my tubes tied. totally freaked out on me which pissed me off. I do not plan to have kids. i would have to get it done privately as i guess i am too young by government standards, haven't had any kids, so they won't do it.

Congrats again both of you !
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