I'd meant to post this after I had gotten the pathology and surgical reports back from my diagnostic laparoscopy in late May. I've been so busy and then following that I got sick, so I didn't have much time to do anything.

My new GYN whom I actually like (gasp), decided to do a laparoscopy to check if it were endometriosis, scar tissue or another problem causing my pelvic pain as well as extremely long, heavy and painful menstrual cycles. He found a few things, which he eventually came to the conclusion that I have two separate pains. GI and GYN.

He found a band of adhesions going from my right ovary to my fallopian tube; I didn't ask why, but those weren't removed. He also found some intestinal problems and noted there had been a small bowel obstruction at some point (gave me a referral to a GI Specialist). He also noted several cysts on my uterus, one which was found previously that had grown in size.

He diagnosed me with Florid Cystic Endosalpingiosis of the Uterus (no, I can't pronounce it).

There doesn't seem to be much literature on it at all, and treatment options seem to stink. I could continually have surgery to remove the cysts, I could have my uterus removed, or I can take constant birth control to try and shrink them as well as stop my periods. I went ahead and started Seasonique last month which is a constant birth control.

From what he said, endosalpingiosis is like endometriosis except instead of being tissue, it is cysts. I've learned it is quite uncommon, but I have my doubts on that. My mother had abdominal/pelvic pain for some time and never had any surgical diagnostic testing done and once they did something they found several cysts as well as a mass the size of an orange on her uterus. I've got the slightest clue if this is genetic, but our medical history tends to always match when it comes to our lady parts!

I did a follow up with a GI Specialist who thinks it's the various areas of scar adhesions that's causing the intestinal problems with me. They did a CT Scan and found a cyst on my liver. Refer to my "I'm lumpy" thread and see why I wasn't surprised. He noted it was benign but said to do an ultrasound to confirm. I am sure that's fine because I have so many various cysts around my body that are fine I highly doubt I will get one that isn't. Between my neck and my groin area, I have 12 cysts on/in various parts of my body. At any rate, I may start to name them.

While it's nice to have a diagnosis, I still have my doubts because I think I have a cyst problem with my whole body. Sure, he's the doctor and all - and it's great that one organ can have something to blame but the rest of them are still invaded by these annoying little growths sans diagnosis!

I'm not too sure on the status of this Seasonique and I'm sure if it's new I'll see some Lawyer commercial in the next year or two saying "If you took this medication, call us immediately!" as that seems to be the case with most gyn-related medications these days. But I will say, this is the first time since I have been in my early teens that I haven't had a period (short of 2 days of very light spotting that didn't even yield a panty liner) that crippled me.

I gained 7-10 days back per month (yes, they were that long/heavy/painful) and I am so excited. I will be horrified if these pills end up being bad and yanked off of the market. I have had a HUGE decrease in pelvic pain as well, but we were waiting 2 months to do an ultrasound to check for more cysts (he did remove the ones I had to do a biopsy on them).

All in all, right now I am much more comfortable and the pain has gone down at least by 60% which is a lot. My periods left me in the fetal position for at least 5 days and were bad enough to give me a fever (I get fevers when I am in pain, it's weird) and make me sweat like a pig. I'd have to load up on iron and chug coffee because I was so fatigued I couldn't even stay awake. I'd go through a economy pack of pads once a month, so I'm already saving money.

No words can explain how happy I am about cutting ties with one thing that has been robbing me of at least one week per month for over 15 years.

It's still a bit early to be so happy, but if any of you have unholy periods like I do, I'd really suggest asking your doctor about that Seasonique. I haven't looked at the risks (it's gave me so much more freedom I almost don't want to know), so I'd say you should do that, too. The only thing I've ever praised like this was after my first cortisone injection in my SI Joint which was the first time I'd been pain free in that area in like 10 years (I did look at the risks on that one).

I'm hoping by next year, they can get the kinks worked out and find everything that's causing my pain and get rid of it. It seems when I go to get one thing fixed, they find something else so I'm always at the doctors office. So my New Years Resolution will be to get rid of pain.

Congratulations on the pain reduction - I hope you can continue to make progress all the way down to ZERO pain!

Gosh, Ellie. You've had a terrible time. I had absolutely no idea you were going through all of that. How shocking for you!

I too hope that you can get the pain levels down and everything sorted out. It's great that you're doing so much better already. Must have been awful losing so much time every month in pain for all those years. ugh.

Here's to better days for you!

((((((((((Ellie)))))))))))))

you know I have you in my prayers, but just wanted to leave more extra gentle hugs

(((((((((((( ellie )))))))))))))

I'm so glad that things are going so well at this point. Thank you so much for sharing your experience so that we can learn from it.

KD

Ok, so the spotting is very random but from what the commercial says, it slows down the longer you're on the medication. Regardless, I've not had much pain at all. The pill does not help for mood swings when you should be having your period. I am 100% certain on this. Haha.