Endometriosis anyone?

They ended up moving my ultrasound and appointment to this coming Thursday instead of last week because the ultrasound machine was down but from speaking with my regular physician and my cousin who is a physician's assistant for a gyno they both seem to think I will be diagnosed with endometriosis.

My cousin told me if the cyst is still there they'll probably biopsy it and the fluid and that they will likely do the ca-125 blood test to rule out some things but that I'll likely end up having to do the lap. surgery.

Anyone had any experience with endo?
My main symptoms as of this point are still --
~ Pain in my lower left side (likely from the cyst)
~ Incredibly painful and heavy periods (mine have always been)

And then in the past few weeks I've felt bloated constantly and had to pee constantly and my last two periods lasted all of two days when they normally last around seven.

Of course the big kicker if that's what it is will be that the treatment for endometriosis is taking high dose birth control and well... I can't even take low dose birth control because of the risk of stroke with my type of migraines.

I don't know... it's a lot to take in.

I guess I'll find out one way or another on Thursday!


Edited to add; Those symptoms are in addition to what the CT showed (fluid in my pelvic and endometrial cavities and a large left ovarian cyst)

This post has been edited by Kentuckychick on Apr 5 2009, 07:31 AM

Have you been tested for anemia? Heavy periods could lead to anemia and all of this could also be a sign of a fibroid.
I'm so sorry you're going through this, Rachel, I hope you get answers soon.
If it makes you feel any better, I get migraines (although they're not so much painful as I get really nauseous and have a horrible sensitivity to light) and have been on bc pills for over ten years and have had no problems. They will definitely give you lighter periods.
Take care of yourself.

Thank you!

As of right now I haven't been tested for anemia. I know that I wasn't anemic when I was in the ER about 2 months ago, but I also was "pre-period" at that point. I often do feel anemic during and for a few days after my cycle and I've been anemic before when I've tried to donate blood. It sounds like they're going to do a host of tests on Thursday so I'm hoping that whatever it is they will figure it out.

The migraines that I get are classic migraines with aura (my vision is affected for about 30-40 minutes before the onset of the migraine). The big fear that my neurologist has is that since I already have some scar tissue on my brain he believes to have been caused by my migraines, he thinks I'm already at a higher risk for a stroke so he's told me every time I see him that for me the risks of being on birth control far outweigh the risks of not. So I know that I have to at the very least go in armed with that information.

I'm the type of person who will accept whatever this is. I'm scared and nervous, but I have always had an "If God brings you to it..." attitude. I'm trying my best though to arm myself with as much knowledge as possible before anything occurs.

Me! Well, that's what they think it is. The ONLY test that can determine if you have endo is the laproscopy, so they can guess, but can't give you an accurate w/o the lap procedure. I'm waiting until this summer to have mine done because depending on what they have to do when they go in the recovery is anywhere from 1 to 2 weeks. I don't have ANY weeks available to be off after being off so much with Megan and then it's session now, so being off a whole week is very bad for me.

There are several ways to "treat" endo. One being the depo shot, another being a shot that puts you into temporary menopause, the other is regular bcps, and the last one is just having as much of the endo removed as possible.

I refused all options except the bcp for now. I will not do the depo shot and my mother did the temp menopause thing for her endo and it was TERRIBLE, so I'm not going that route. I'll try to have as much as the endo removed when I do the lap in the summer, plus go ahead and have my tubes tied so Dh won't have to get snipped. Figure they are already in there, why have us both have a procedure done.

I have the same symptoms as you: frequent urination, pain in my right side (which is where my biggest cyclical cyst is), pain in my right hip, wacky heavy periods.

The problem for me is taking the bcp. I got off them so I could get rid of the migraines and now being back on the bcp I'm dealing with them again, but with the help of a compounding pharmacist they are much less than they used to be.

I have fibroids that cause some discomfort and many of the same symptoms you described. Here's more about it here: http://forums.parentingclub.com/index.php?showtopic=68350

My doc would like for me to do something, but I haven't done anything about it yet as it is not a health risk, just a discomfort at this time. The doc is just keeping a close eye on me and I get an U/S done when I go for my gyno appt.

You're right, the normal treatment is with birth control pills. I can't take birth control pills either, but because I have a history of calcification in my breast -- taking birth control pills puts me at greater risk for breast cancer.

Please keep us posted on how your appointment goes.