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Endo Girls
the ongoing saga of bloody pain
New here. New to Endo. Laparoscopy soon. 
4th-Nov-2012 06:15 pm
[ m e ]
Hi ladies.

I'm a first-timer here.  I have my first exploratory laparoscopy (via CO2 laser) scheduled for day after tomorrow (Tuesday) and... well, I'm terrified.

I'm 27 years old and have never had a child.  I first got my period when I was 12 and suffered from intense cramps and excessive bleeding (as in, bleeding through a Super Plus absorbancy tampon in a matter of an hour).  My periods would last 2 weeks at a time.  I was put on Depo-Provera at 13 because I became anemic and finally stopped it when I was in my early 20's due to weight gain and mood swings.

I never really knew I even HAD Endometriosis symptoms since the Depo caused me to hardly *ever* have a period.  When I got off of it though, I began developing painful ovarian cysts, pain during intercourse, flank pain, pain during urination and chronic fatigue.  I also get these strange sensations where it feels like someone is literally jabbing a knife "up there" (not to be gross, but I'm sure y'all have heard it all before).  The ovarian cysts favor my left ovary.  There are times where it literally pains me to bare down on my left foot when I walk because that whole area just throbs.  And not even necessarily during/around my periods (which are near impossible to predict).

I was uninsured for years and kept having to go to the ER for the symptoms.  They did a pelvic ultrasound and said I had a 2cm "functional cyst", pumped me full of morphine and then home I went.

Another time, they did a pelvic exam, told me my cervix was inflamed and then gave me a differential diagnosis of PID... which sent me REELING.  My husband and I have been monogamous for 7 years.  When I told the ER doctor this, he responded with, "Yeah, well, all it takes is one" and gave me an injection of Doxycycline (antibiotics).  I let them do the injection thinking maybe it would help the symptoms, regardless of what they thought it was that I had.  It didn't help.

When I finally got insurance, I went to see an OB/GYN.  She said Endometriosis was definitely possible.  My mother has had 3 laparoscopies due to excessive Endo.  My little sister was conceived via IVF.  My aunt (father's sister) had it so bad, she had to have a complete hystorectomy at 32.  The genetic factor is there.  My biggest worry/concern is that the physical evidence won't be when they go in to do the laparoscopy.

I want a diagnosis more than anything.  I know this isn't inside my head.  My family and OB/GYN knows this too.  I just wanted to share my story and see if any of you felt the same way (nervous about obtaining a diagnosis) prior to a laparoscopy.  Also wanted to see if anyone was initially diagnosed with having a "functional cyst" which ended up actually being a chocolate cyst/endometrioma.  I'm not even worried about the procedure itself, regardless of the fact that this will be my first ever surgery of any kind... I just worry about the findings.  Or in this case, lack thereof.

Thank you all.
5th-Nov-2012 02:57 am (UTC)
Here's your t-shirt! *hugs* :)

In all seriousness though, I think we all had that feeling before our first lap. You kind of can't help it when this is the only way to get diagnosed. They're working on it -- a blood test based on genetics is in the works, among other things, so something better should be out there in the next few years. But that obviously doesn't help you right now.

The best thing you can do is just try to relax. Even if they don't find endometriosis, (a) that doesn't mean you don't have it, first of all, because sometimes it is so tiny that a less experienced surgeon misses it, and (b) while they're in there they might find out something else that helps diagnose what's going on. So think positive - something good will come of this.
5th-Nov-2012 03:54 am (UTC)
ER doctors suck so badly, for the most part. I have come across MAYBE 3 decent human being ER docs. That's not stellar, that's just decent. I have had ER docs run pregnancy tests on me without my consent (and when I told them I had no chance of being pregnant because I was not sexually active). I'm so sorry that ER doc made an attack on your relationship. Yuck.

No one wants to be in this club, but I'll tell you the company is stellar. Some of the absolutely nicest, kindest, most intelligent and caring women I have met in my life, many of whom I consider some of my dearest friends, are from this community.

I wish you the best outcome that you can expect from your surgery, and as easy a recovery as possible. You are very very much not alone.
5th-Nov-2012 04:21 am (UTC)
In many ERs, it is policy to run pregnancy tests even when women are not sexually active. Why? Well, some people lie, and many of the treatments/diagnostics are potentially harmful to a foetus. So many places treat all women as if they're pregnant until they find out otherwise.

So yeah, the doctors might be dicks, but the pregnancy test may have been them following policy that's there to cover their asses.
5th-Nov-2012 09:16 am (UTC)
I agree with everyone else so far! *hugs* and breathe. You will be okay. I was so scared of my lap until my sister reminded me that a laser is just concentrated energy. Somehow that was such a beautiful idea for me. It is a whole new world to figure out the medical system, just be patient and see endo as something you are learning with and learning from. Come here when you are frustrated and we're here in your corner! Be well.
9th-Nov-2012 04:32 pm (UTC)
ER doctors are terrible. I went to the ER when I was in the 6th or 7th grade because I had had my period for over 2 weeks and I felt like the creature from alien was coming out of me. The ER doctor told my mother I just had a low pain tolerance and I should stop whining. 15 years later I got diagnosed with endo.

Let us know how it goes!
11th-Apr-2013 03:46 pm (UTC)
I am 24 years old and suffering from endo for 13 years. I don't have insurance so I have yet to be officialy diagnosed. I know exactly what your feeling and the need to know what's really wrong with you. I hope your surgery goes by really fast and you get the answers you deserve!
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