frustration

sweet pea · #1 11-22-2009, 06:12 PM

I have a lymphatic malformation, and was diagnosed early on in childhood. I'm now 20 and still learning more about it. I get pain with my LM around that time of month, and also have severe cramps then, too. I wanted to go on the pill to help it, but I get conflicting information from doctors. Some say it's fine that I do that(using the pill - hormonal treatment), and others say no, it's highly not recommended. I haven't been on the pill because from what my gyno found out, she won't risk putting me on it. I just want to know how hormones affect the LM and whether a person with LM can use hormonal treatments, like the pill, or not. I'm so frustrated with it all. I've been emailing doctors and calling, but haven't gotten real answers. I'm getting so tired of it.

RowdyBliss · #2 12-03-2009, 03:49 PM

I feel you on this one... I've been trying to find out the same thing, myself, because I've heard a lot of conflicting reports on this too. I have been taking hormonal birth control for fifteen years... and I've heard murmurings that folks with port wine stains/Klippel-Trenaunay shouldn't take them because of increased risk for clots, etc. - but maybe they take it on a case-by-case basis, depending on the severity of the lesion. I have my annual soon; I'm going to take up the issue with my gyn and see what she says. I'll probably post about it here.

I wonder if there are herbal/holistic treatments you could try to help you with your symptoms? Maybe in conjunction with your gyn, doctors and perhaps an herbalist, you can come up with something that eases your pain a little? I'm not sure if you experience pain because of swelling, but I know that when I get swelling in my birthmarked foot, I sip something called PMS Tea (in the "hippie-food" section at the grocery store) and it does help the swelling a little, and definitely eases my cramps.

Keep me updated re: what you find out about hormones, and I'll try to do the same.

sweet pea · #3 12-08-2009, 03:44 PM

Well I got an email back out of the several specialist I tried emailing, though all he said was to try using the pill and just see how it affects me. I'm not sure I want to do that though because if it does cause swelling problems, then I might have to have another surgery or what not and I definitely want a break. I'm hoping the surgery I had in August will be my last for a long time. I'm still waiting for replies from other doctors...

kaykay · #4 12-10-2009, 01:33 AM

i have no problems with the pill ! hell i don't ever want to get off it. I guess you can only try and see what happens. I never regretted it. It helps alot. I hope someone gets back to you with real info.

I hope you can find an alternative in the mean time. try avoiding foods that may affect you during that time like milk and meat.

sweet pea · #5 12-14-2009, 04:02 PM

Thanks, though the reason I'm worried about the pill is because I do know that hormones affect Lymphatic Malformations. I know with PWSs and other vascular malformations it can increase your risk for blood clots and similar things like that, but with the lymphatics it can cause severe swelling and pain. I don't know if I want to risk that... :/

Valerie13 · #6 01-21-2010, 06:39 AM

I was also wondering about the pill. Have you heard anything? I'm 28 and recently married, and don't want kids just yet.

sweet pea · #7 01-21-2010, 06:09 PM

Haven't heard anything else. I feel as if my age hinders me, but I haven't gotten responses like I'd hoped. So far a few have said there just isn't enough information, so you just have to weigh pros and cons. It's almost case by case that it has to be looked at.