Wednesday, March 07, 2007

Endometriosis Surgery Photos

EDITED TO ADD (July 24, 2009):
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!

__________________________________________
ORIGINAL POST:

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.

15 comments:

Rose Connors said...

Thanks for the explanation and the photos. I can appreciate the situation you're in and the choices you have to make. It sounds so much like my own situation. We've been trying to get pregnant for three years without success. I've been charting based on physical signs. Feel free to ask if you want more info and best of luck.

Alasdair said...

Indeed. You will not be surprised, o butterfly lady, that I concur with you on all these dark things (as well as the other, lighter ones :)

I do not see this part of our lives as a fate to resign ourselves to, but just as another piece of us. To lift another WZ line, we'll get through somehow.

Chase said...

:(

Anonymous said...

I feel your pain - physically & emotionally. I have stage 4 endo and was diagnosed in 1994. Since then I had 1 tubal pregnancy which ruptured, 1 miscarriage - both of these pregnancies took over 1 year of trying. I finally decided to try IVF at the age of 29. The first cycle worked! My daughter is now 8 years old and the best thing that has happened to me. Haven't been able to get pregnant since but we are now preparing for another try at IVF. Do some searching on the internet, there are a lot of respectable doctors out there with programs that will give you up to 80% of your money back if you don't have a live birth. Keep the faith and good luck to you!
christy, macomb, MI
cate12345@comcast.net

Writer Chica said...

Don't know if you'll read this, since it is a post from several months ago.

Thank you for your comment on my site. The pain got worse on Tuesday and I went to see the doctor. She poked around and I winced in pain and she ordered an ultrasound. So tomorrow I get an ultrasound and maybe see what if going on. The pain is less today anyway. Seems likely that it is a cyst since my mom and grandmother had them.
I don't know about the endo, but I do have some possible indicators. Like severe menstrual cramps since my first period and these did get better after having my children. but I had no problem conceiving, so I don't know. just wait and see, I guess.

Anonymous said...

This I can relate to also. I'm only 22 years old and I have been told that im at a stage where the doctor has to remove my left ovary and fallopian tube due to severe endometriosis. This is just something that scares me and at the same time makes me think about my future. I have never had children and just got married this past october and me and my husband and I were planning of waiting at least three to four years to have children, but now with all this i can only hope that we will even be able to have any children. So please ladies out there if you feel like theres something wrong with you body dont hesitate to ask for a second opinion. It can change your life, and even save it.

AltheaP said...

How clearly you write about this! I was diagnosed with endometriosis in 1975. Desperate for pregnancy, I had three surgeries within a span of six years -- listening too closely to doctor-heroes who knew they could "fix me". I ended up with a frozen pelvis and chronic pain. I had a complete hysterectomy in 1987.

IVF and lasers weren't an option back then, and my husband and I decided to adopt. Our twins arrived to us from Korea in 1983.

I just want to say that, although infertility ruled my life for so many years, the minute I had my girls in my arms I thought, "Why did I do that to myself? These are so obviously my children?!"

Joslyn said...

Thank you for posting your information. I am 25 years old and have had some promblems since I was, well for as long as I can remember actually. With having cyst and etc... I have an immune disorder where I dont produce white blood cells they haven't found any cause of that promblem and no disease related to cause it. So when I started feeling sick I just thought it was from that.... Well today my doctor said those words " You have endometeriosis..." I held it together till i got in the car and then started crying. i feel like the chances of me having children one day just flew out the window. They do not know what stage it is and I have asked to start treatment with out surgery because I still want to have hope. I come from a family of pretty much all women for decades back all with thybroid tumors, cysts, endometrioisi and tons of miscarrages. My grandmother died before I was even born from cyst. They went in to remove them and they ruptured got into her blood stream and sent her into cardicatic (spelling) arrest... and pretty much every aunt on both sides of the family, and my mother have all had hystorectiums (spelling?) Although I am single and wont be having children in the next year atleast even if I wanted to, I would like to in the future. I am trying to understand this and deal with it all at the same time but i just feel like crying... because of the pain and from not knowing the future... Thank you for posting this because the pictures, although turned my stomach, and well my uterus! ;) I can understand whats going on inside me a little better. Although I am still lost on what to do for treatments... what do you recommend?

Field Notes said...

Josyln, I feel your pain. I can tell you that in my experience, the surgery helped my pain go away for about a year. It is starting to come back though, little by little. I have not yet tried taking birth control pills continuously (you skip the week of placebo, that way you never get a period). That is said to help minimize or totally eliminate the pain. But as far as becoming pregnant, the surgery didn't help me. I know it has helped others. The best thing to do is seek the expert opinion of an experienced reproductive endocrinologist and try actively to become pregnant as soon as you can since waiting will only lower the chances further.

Joslyn said...

Unfortantly I have tried birth control. They put me on BC when I had just turn just turned 19. I have been since then... With in the last year ( i am on seasonal the 3 month BC) they have had me skip the week off and keep taking them. When my period start April 1st 2008 and still hasn't stopped...Yes, its September 1... my whole summer! while I am STILL on the BC, the red flags went high up! i had an ultra sound and it came back fine but it killed me! The internal ultra sound was so painful, the women put that in her notes. When I went into get the results from the ultra sound from the two page list of sysmptoms they said it was endo. So I guess the next step for me is to find out what stage... Although I would LOVE to get prego as soon as possible.... I am guessing that isn't the best pick up line! lol hey, im joslyn 25 and single, want to have a baby? I think most guys will run... I am trying to stay strong and postive and I am also going to try and do the Endo diet. I have done lots of research on it as well. I meet with a Health and Wellness Instrutor this week, but even she said, depending on what stage it might be to late...
I stop taking my birth control pills in a week... (when the doctor wanted me to start the shot) So I have decide what I am doing and do it with in a week...

I am sorry you aren't having luck with your situation either. I really feel more people need to know about this disease, I have only told about 5 close friend (4 are girls) and they had never heard of it. The guy is an ex boyfriend and still good friend and he asked if it was contagious! I asured him he didn't have to worry about his reproductive organs and he was like, oh it effects that, okay... lol men! It effects 70 million women it should be more well known! I am very glad you have your blog page for this. Thanks for responding to me!
Joslyn

Lave-me! Soap Co said...

This is soo helpful! The last doc did not even see me before the surgery and showed me pics after to prove there was nothing there not considering the microscopic endo that cannot be seen. I fear another surgery but maybe this doc will be better. I am sorry you have to go through this but you really helped me today.

Field Notes said...

*** UPDATE ***

Apparently the surgery worked =D
I'm now 6 months pregnant! Lots and lots of women with endo wonder how that affects pregnancy, I know I definitely did, so I'll just report that mine has been totally uneventful so far!

Hang in there, women with endo — and see if you can have the surgery to remove the endo, but go with an excision by scalpel (sonic scalpel) instead of a laser surgery. The laser approach doesn't remove the endo as effectively.

*Tink said...

I appreciate & thank you for your detailed post on this subject. I just had surgery yesterday for pelvic adhesive disease and endometriosis. I'm so happy to hear that your surgery resulted in the pregnancy you were hoping for! I had my son 17-1/2 years ago and when I was 3 months into the pregnancy I had to have surgery to remove an 11 cm cyst attached to the left ovary. They couldn't get the cyst untangled & it was threatening rupture & the life of the fetus, so they took it and my ovary. I was also told that I wouldn't be having any more children because the right ovary was damaged (although they didn't bother to tell me how or do anything about it. I suspect it was endometriosis but I didn't know anything about it back then.) Most surprisingly, 14 years after he was born, we found out I was pregnant with a daughter! Truly a miracle but I've had the most severe pelvic pain now since her birth by c-section in the same incision, from my son & the cyst surgery. I've had ultrasounds & all kinds of yeast infection treatments (that I told the doctor I didn't need!) and no doctor was able to help me. I just got lucky one day when my GP suggested I go to the Women's Clinic and try a new doctor. I was not happy about it & actually kept rescheduling for 3 months. Finally I met with him & within the hour (he was VERY thorough when asking questions & read all the medical history I had type-written for him) he was sure I had pelvic adhesions and endometriosis. It's less than 24 hours after surgery & I am pain-free in the spot that I've been complaining about for almost 20 years. So to everyone who is battling this, I wish I'd known about it & could have been as proactive as you are. But whatever the situation, don't get discouraged each month you don't have a positive test & don't ever give up! I always said if I was meant to have another baby I would & I believed that wholeheartedly. The time just took a long time to come. :) Hugs! Lorilyn

Anonymous said...

i feel your pain and what you had been through. i subfetirlity for 3 years i had my first sugery on apr 2008 and had another in 23 march 2012 and had left salphingectomy. And now i had endo stage 4. Fortunately Specialist said that my right phillopian tube was ok. Now i on 3 cycles treatment of s/c zoladex. After this june i will try to get pregnant. Its just a great encouragement to hear that you pregnant...and have baby now. I hope i can get pregnant too.

Field Notes said...

Thank you for writing, Anon. I hope that you can get pregnant, too.