Ladies with endometriosis..

puppyluv13 · September 2017

I've got a question for those of you with endometriosis... Was it easily recognized and diagnosed?

I haven't been diagnosed, and it's never come up over the past couple of years with my RE. But I've been doing some research and I have several of the signs and symptoms associated with it. I'm just wondering if it's something that could have just been overlooked? Or maybe I'm just grasping at staws...

So I was curious to hear about how you ladies were diagnosed...

latvaughanash · September 2017

I think it can definitely be overlooked, but at the same time having some of the symptoms doesn't mean you have it. I had issues getting pregnant for 4 years before I saw a new doctor specializing in infertility and it was the first thing he said! I think seeing someone experienced in recognizing small symptoms as part of a bigger issue is the key, and not something you'll find with just any doctor.

I opted to not have surgery to find out for sure if I have it/treat it and instead move straight to IVF (mine is pretty mild), but even knowing it's a concern is a big part of choosing how to move forward! It wouldn't hurt to tell your RE that you're wondering about it and see what he/she says.

JamieH2000 · September 2017

Endo is hard I think since there doesn't seem to be any consensus on how bad it needs to be to truly affect things, especially in IVF. So many different opinions on if its really beneficial to do surgery to remove it or not. And also no great way to diagnose it without surgery.
I had a laproscopy after 2 failed IUIs when I had multiple follicles. The RE had reco'd either IVF and Lap, and since I had two previous abdominal surgeries for Appendix and Gallbladder, we were concerned about scar tissue/adhesions. They ended up finding mild end (stage 2) and removing it. The RE said it wasn't bad enough to have really affected anything fertility wise. So I didn't really get any answers, but the surgery wasn't too bad for me and it was covered. I don't regret doing it, but also its unfortunate that it didn't really do anything to move me forward. There are definitely pros and cons, and every RE will have a different thought on it. If you are thinking your next step is IVF, I think most will say a surgery isn't necessary. Best WIshes!

Labluver2 · September 2017

I haven't been diagnosed but it has been mentioned that I do have a cyst that could be an endometrium cyst. I'm actually going to talk to my Dr about possibly doing laproscopic surgery to find out for sure. I've been reading that it could be more difficult to get pregnant. I remeber having really bad periods in my teens and early 20s they have since not been as bad and I do get pelvic pain alot so I'm wondering now if I have a mild case that I don't know about.

tosh24 · September 2017

I wonder about this as well. From the time I first got my period (age 11) until I was in my early 20's, I had the worst menstrual cramps ever. Like dry heaving over the toilet bad. I haven't had cramps for the last 10 years or so with AF, but I do have some other signs/symptoms like migraines with AF, heavy periods, pain during intercourse (position dependent), and sharp bowel pain in the same spot every AF. I also have adenomyosis which is like a "sister" to endo and some of my symptoms can be explained by the adeno, but it is also common for women who suffer from adeno to also suffer from endo.

I think if you're early on in your TTC journey (in terms of how far you'll go with treatments, not necessarily how long you've been trying!), it doesn't hurt to have all the info you can. If you think it's something you will always wonder about if treatments fail month after month, and there is some evidence to support more testing, go ahead with the lap. I've also heard of it being diagnosed by MRI but not sure how common that is. But yeah, definitely bring it up to your RE.

liljoy-2 · September 2017

I've been dealing with a bad case. In my case, we knew for sure when I started to have inhumane ovary pains and on ultrasound they diagnosed big endo cysts on my ovaries. Then I had laparoscopy and still couldn't get pregnant. So I think some REs don't recommend surgery for suspected mild endo (as you can't know for sure, it doesn't show on US) as if you tinkle with the ovaries you CAN diminish the follicle reserve (as in my case). But yes, endo does seem to impact natural fertilization, but how severe it has to be before it does, nobody knows.

steph8986 · September 2017

I went 9 years without a diagnosis to my infertility. After starting back up with an RE this past February, they insisted on doing 3 IUI's before considering surgery (even though 5 years ago I did 4 IUI's unsuccessfully) they were of course unsuccessful as well, and then I was given the option of IVF or Laparoscopy. Even though my only symptoms were painful periods and occasional painful sex, I chose surgery. They found severe stage 4 endo, and even though they cauterized most (there is a large lesion on my colon they couldn't touch without resecting my intestine, the recommendation and plan is still IVF. My dr. explained that even though my endo was not "distorting" any anatomy, that they still produce toxins which can kill eggs and interfere with fertilization. We will be starting IVF at the end of October with a FET in January per her recommendation for Endo. I think it's worth exploring, because how they do your IVF protocol may vary based on diagnosis. In my case it was an easy decision. Insurance covered surgery, does not cover IVF. I wanted surgery out of the way first to have a better chance at success with IVF given the high cost.

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