If you're here because like me, you have endo and are scared about what it means for your ability to conceive and have children, here's my story. When I found out I had severe endo, and what that meant for my ability to have children, I scoured the internet for anything I could find about what my chances were. What I read was not encouraging. But, I am now here to say - it IS possible to get pregnant completely naturally if you have endo. It happened to me.
I had the surgery in Feb 2007 and by Oct 2008 I was pregnant with my first child. No fertility treatments, no drug therapy, just plain old, FUN, conventional conception. I think it is a medicial miracle, but I also think the surgery had a HUGE role in making it possible for me to conceive. I had my baby July 14.
When I was scouring the internet for info about endo and pregnancy, one of my big questions was how much labor and contractions would hurt because of the endo. Would they be more or less painful? I don't know if it was just me or my experience with the pain of endo, but the contractions I had were very managable. I really thought they were going to be A LOT, LOT worse. In fact, I labored at home, alone, until I was 8 cm dilated! I had no idea I was that far along by the time I checked into the hospital. I credit having gone through the pain of endo for preparing me.
I also ended up having a C-Section. My uterus and cervix would not dilate further despite the use of pitocin (something I had wanted to avoid) and I had already been laboring at 8 cm for 10 hours before the decision to do the c-sec. My doc said, "You may look 14, but you have a 35-year-old uterus." I don't know if my uterus gave out because I was in labor for so long, because I am 'older' or because I have endo, or perhaps because I had surgery on my uterus and cervix. The medical peeps don't know either, but I thought it's something you might be interested in knowing because more info never hurts, in my opinion!
My post-operative follow-up happened yesterday.
Scroll all the way down to see the photos and their explanation.
Dr. Bad News, as he has come to be known, went through my photos with me and I can say a couple of things: 1) I got a taste of what some of my students must have felt when I rushed through slides on occassion, 2) I like all the gory details and want them in official medical terms, 3) I hate feeling like I am being up-sold, and 4) I really hate wasting time being given info I already know.
Observations 3 & 4 come from Dr. Bad News pitching IUI (intrauterine insemination) and IVF (in vitro fertilization) as the first choice options for getting me pregnant. This came after he told me endo is associated with infertility and that there are two theories why: structural and inflammation/immunity problems, which I knew about and I also knew already that no one really knows to what extent or how or why endo is associated with infertility. A paper I read said there is no clear connection, and therefore no strong empirical support, for the widely held notion that endo and the immune system contribute to implantation problems. The idea persists like it some sort of old wives tale about not going out with wet hair or you'll catch pneumonia. Dr. Redwine in Bend, the other endo specialist I could have gone too, concurs that infertility is not strongly related to endo. It is incredibly vexing that no one really knows exactly what the hell goes on with endometriosis and infertility.
So, Dr Bad News, who is in private practice at a fertility clinic walked me through the photos of my Roto Rooter surgery and then told me he thought I should immediately go for the heavy guns approach to getting me pregnant: IVF. It costs $12,000 just to try once. Most women need three tries; I'm sure you can do the math for the cost. And that all adds up to a 60% success rate. $36,000 for a 60% chance. Our insurance covers none of it. Nor does it cover the 10% success rate IUI route; who knows the cost there.
And - if infertility is related to immunity problems, getting rid of the endo inflammation *might* minimize the immunity problem (i.e. the immune system creates an environment that is hostile to the egg, sperm, and/or embryo implantion), but the longer we wait or the longer it takes to conceive through whatever means, the more likely the endo and hostile environment will come back, and the more likely it comes back with a vengence. So, if it takes three years to come up with $12,000, then it's pretty much a fool's errand because a) the endo will be back, b) my uterine/ovarian environment will be hostile to implanation, and c) my eggs, what's left of them after the surgery, will be in poorer condition because I will be that much older and the endo will have had that much more time to screw them up.
I know I have severe endometriosis. Dr. Bad News didn't need to sell me on IVF which we can't afford right now and which won't be likely to work when/if we can afford it. I know that if I get pregnant and don't miscarry it will be somewhat of a miracle. I'd at least like to give the surgery and my cleaned out body a chance to do what female bodies were molded over eons of evolution to do. And, if it doesn't, oh well. Why would I want to use artifical means to bring a life into this world who will likely carry the genes that contribute to endometriosis and infertility? If my body won't carry a pregnancy then I don't want to force it to. That seems like a bad idea.
By all other accounts, including Dr. Bad News when I prodded him for an answer, the surgery I had is supposed to make it more possible for conventional conception. That is not only free but FUN.
Here are the photos:
LEFT FALLOPIAN TUBE ENDOMETRIOSIS
The arrow points at a spot of endometriosis on my left fallopian tube. That yellowish-brown spot is about the size of a pin head. At the lower left corner you can see some blue stuff. That's the dye he shot through my tubes to see if they are open. The fact that you can see the dye means the left tube is open. That doesn't mean that an egg released from the left ovary will make it down the tube to be fertilized by sperm there. The inside of tubes can be like obstacle courses with many places for an egg and sperm to get stuck. Tubes can "not move well" even though they are open. That means the tube might be open but it doesn't move the egg along.
SCAR TISSUE in the Pouch of Douglas
All that greyish, filmy stuff is scar tissue that has connected the back of my uterus to my rectum. Endometriosis is commonly found in this space, called the Pouch of Douglas. It could be what was causing me to get diarrhea with my periods, a classic symptom of endo. The brownish spots near the top of the photo on the pink organ look like more endo.
ENDOMETRIOSIS on UTERUS
This photo shows my uterus looking an awful lot like a baseball (in pink) with yellowish-brown stitches pointed out by the arrow. That's an endometriosis adhesion. It may be what made menstrual cramps painful.
LEFT OVARIAN CYSTECTOMY
The photo above shows the cut open endometrial cyst on my left ovary. The red stuff is "old" blood that had filled the cyst. The cyst blood was allowed to spill into my body where it will presumably be reabsorbed. I was told the cyst wall is where the endometriosis is and the blood inside is harmless, but I don't believe that. Other surgeons put the entire, unruptured cyst into a a little baggy and then pull it all out of the laparoscopic tube. This means none of the contents of the cyst, and none of the endometriosis, has much of a chance of coming apart and then attaching somewhere else. I do not like, not one bit, that my cyst was ruptured and then only the cell wall was removed.
ENDOMETRIAL CYST CELL WALL
I was told that the endometrial cyst had grown into my ovary and that the presence of endo there can harm the eggs in the affected ovary, diminishing their "quality." What that means - if my left ovary is the one that produces an egg follicle, the egg that tries to make its way down that questionably okay fallopian tube might have genetic abnormalies that might impact its ability to implant and then be carried to term. Eggs with severe abnormalities are usually spontaneously aborted and end with a miscarriage, something that happens more often for women who have endo. Because my left ovary was monkeyed with, the eggs may have been reduced in number. By how much, no one knows.
RIGHT OVARY ENDOMETRIOSIS
The white thing is my right ovary, about the size of an olive or an almond. It had some smallish spots of endometriosis on it as well. It thankfully did not have a cyst as well which is good. However, no one has told me whether my right ovary is functional, and none of the photos I have show dye flowing out of my right ovary. The doppler echo on my last ultrasound didn't make any noise when they listened to my right ovary. The left one did. I did not think to ask about the status of my right ovary at the follow-up because so much of the talk was about the other more glaring problems. I called my surgeon's office and left a voice mail with him asking about the right ovary, but I'm not expecting a call back.
I wonder if I will ever be able to get pregnant given the extent of the endometriosis I had. My left ovary is seriously screwed up at best, and although the left tube is open, it has questionable structural quality so I may have to rely entirely on my right ovary and right fallopian tube to work in order to get me pregnant. That's why I am freaking out about the lack of a photo showing that my right tube is open. On the bright side, I have always had regular cycles, so I have most likely been ovulating. I got my period right on schedule just two weeks after the surgery, so my cycle seems to still be regular. If so, I am supposed to ovulate in a couple of days. An OPK (ovulation predictor kit) will tell us whether that's the case. Although my surgeon said he removed everything he saw that he thought looked like endometriosis, there is no guarantee that he got it all. In fact, he most likely didn't given that some of it was too small to see. That, combined with how the cyst was removed, makes it possible that I will have endo show up where it hadn't previously been somewhere down the line as long I continue to ovulate.