Endometriosis is no joke. I certainly don't want to have to repeat a laparoscopy every six months or year. I never want to go on birth control ever again (unless of course for IVF). I don't want to worry about endometrial tissue damaging my ovaries or causing my tubes to adhere to my abdominal walls. Endometriomas sound terrible and terrifying… no thank you. I totally get that endo is not a fun diagnosis. 90% of the world assumes endometriosis is "killer cramps"… I don't envy the girls who have to explain that it's so much more. So why was I/am I upset with my "all clear" post surgery?
Everyone was asking and wondering what I was hoping for in terms of the surgery. I hadn't spent too much time thinking about it beforehand. Honestly, I was so scared, I just wanted to wake up and to have all of my essential reproductive organs still intact. But as I said before, upon hearing that there was no endo, I began to cry. I was admittedly kind of surprised by my reaction, and I'm sure a lot of it was due to the anesthesia. But I also think that on some level, I was disappointed. I wanted there to be a reason, a partial explanation, a diagnosis that I can explain to people. I wanted to leave the surgery with an increased chance of pregnancy. I want there to be something there that we can treat.
Instead, I'm left with knowledge. I don't take that for granted. I now know that despite my symptoms, despite my elevated levels, I do not have endometriosis. There has not been anything within my uterus obstructing implantation. My tubes are open and capable of transporting the eggs effectively. These are all good things to know. I'm super thankful that I can mark those things off the list. Any pain that I've experienced from the surgery I consider well worth the knowledge we've gained.
However, with this knowledge, with these answers, comes more questions. And several of these questions are hard. For example: Is my body killing off healthy embryos? Are Sam's sperm and my eggs incompatible? Are there genetic or chromosomal reasons why we can't conceive? You get the picture… the questions I'm left with are game changers. Endometriosis is terrible. But in the big scheme of things, it was an option that I could wrap my hear around. I knew what the treatment options would be and I knew that our chances of conceiving a child (even if via IVF) would still be high after treatment. Now that I've marked it off my list of "why's", I'm forced to look at two years of actively trying and only one recorded pregnancy which quickly failed, and well, I'm forced to confront the possibility that things may be a lot worse than I thought.
But that's as far down that rabbit hole as I'm willing to go at this point. This coming week has a lot of really
I totally understand the strange disappointment of NOT getting an endo diagnosis. Perhaps it's something that only fellow infertiles could understand...but having a NAME for what's ruining your life is a lot better than not. :) I am eager to hear what Dr. S says at your post-op about what else he found during surgery, though. Hopefully at least HE was enlightened through the whole thing.
ReplyDeleteI completely understand your sadness after your surgery. Knowledge is great and all, but having a diagnosis for something that can maybe be fixed is crazily, something I feel like us infertiles hope for. Without that, we are left to have to wonder and worry about other scary things... Ugh. I hate infertility! I am glad though that you have a great weekend ahead... Congrats to Sam!! xo, friend!
ReplyDeleteOops.., week* ahead!
DeleteThe good news is no more laparoscopies! Hopefully more information will be revealed at your post-op appointment to guide you to the best next step options from here. I'm so amazed by how brave you have been through all of this. You're an inspiration! Love ya!
ReplyDeleteHope the appt goes well tomorrow and you get some clear answers. As great as it is as there is no endo, I'm sure it's super frustrating too! Congrats to your hubs!!!
ReplyDeleteI totally get this. Sometimes I'm actually kind of happy about my PCOS diagnosis because I can do something about it! That "something" may notmake much of a difference in creating a baby but it makes a great deal of difference in my head.
ReplyDeleteI can understand how you're feeling - no answers or "unclear" answers are sometimes more difficult than having concrete facts. (This is coming from someone who is in that grey zone at most of my RBA appointments). BUT, I have faith in your doctors to hopefully glean something out of that surgery that is going to put you on the right track!
ReplyDeleteI know it's hard to not have answers, but I really think that your not having endometriosis is a great thing. They found stage 1/2 during my lap, but three doctors (including two specialists) don't believe it had anything to do with my early miscarriages, nor do they think it is affecting my fertility at this point (because of where it's located). All I'm saying is, endo isn't always the culprit. And better to be able to rule it out than worry about endo AND something else. I hope you get some answers soon. Or better yet, I hope you just get pregnant! :)
ReplyDeleteAmanda, I totally get your frustration! When I had my lap my Dr. only found 2 small spots of endo. and didn't even diagnose a stage- basically just said "you're all clear! Everything is great!" I had the same type of reaction as you did. It was hard to explain that I was hoping it would be something...some clear cut answer for the years we had been trying with no success. I never got one, BUT moving on to different doctors, having that lap crossed a lot off of the 'to do/to check' list. I also wasn't one of those lucky ones that got their BFP in the six months following the surgery. I banked on that one too hard and was extremely disappointed when I didn't have that happy ending. Hoping you do get some good answers soon. Thinking of you!
ReplyDeleteI get it. Having a answer, even an unpleasant one, feels so much better than having questions. I hope your post-op sheds new light on the results.
ReplyDeleteWhen I woke up from my lap, the first thing I did was reach down and feel for how many incisions I had. I knew that if there was only one, they probably didn't find anything. I don't know who was in the room with me, but they must have known what I was up to because they they started telling me how many incisions there were and where they were located. Even in the drug haze I needed to know that I wasn't crazy and there was a reason for all of this. So I can totally understand the frustration of not having answers or anything specific to treat. I hope you get an answer soon, but I'm glad it's not endo.
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