So what does endo do, anyway?

Didn’t have the greatest of days yesterday. Had quite a lot of bleeding- enough that around lunchtime I started to wonder if maybe I should be calling someone about this. Luckily Dr. G.oogle was only a mouse click away (I have got to stop doing this!) which reassured me that the bleeding was probably normal, especially if it tapered off by the end of the day (which it did). And the belly button incision was just really sore and uncomfortable. And then I thought it was getting infected late last night before bed (although in retrospect I think that was the codeine talking as it looks fine this morning).

Q. thinks I over exerted myself yesterday, hence the bleeding and extra sore tummy. According to him, my over exertions consisted of the following: restacking the dishwasher; going up the stairs when he’d offered to get something for me; putting chopped veggies on pizza.

I didn’t think that was too outrageous a day, but he’s refusing to let me do anything today except sit at the computer and fiddle with one of my essays. And I must admit that the belly button felt a lot better after I’d been horizontal and sleeping for several hours.

My f/s rang me this morning, returning my call from yesterday. It amazes me when he does that. The clinic’s so busy, I just expect that messages will vanish into the ether. Anyway, he is so happy he did the surgery. He called it “mild to moderate endo” and said it was in all the usual places, on the bladder, the uterus, etc.

So he wants me to pop in as soon as I’m feeling better and get some pro.vera to start a new cycle. I didn’t ask him how quickly the endo is likely to grow back, or if being on bcps suppresses the growth. I’ll have to remember that for when I see him.

I realized as I was talking to him that I don’t really understand how endometriosis works. How long has this stuff been growing inside of me? I used to have terrible periods- when I was on the pill. Since coming off, the bfn bleeds I’ve had have been so easy. No cramping and much lighter. Can endo start growing and then stop for a while?

And why does endo keep you from getting pregnant anyway? My f/s said it creates a “toxic” environment, but it sounded like that was their best guess to me, and they’re not really sure why it has the effect that it does.

If you guessed that now I’ve got something new to read about, full points to you! I feel like a whole new section of the infertility landscape has suddenly come into focus.

And the funny thing is, you should read back and check out my reaction to when I discovered that I had an auto immune thyroid issue. Because I completely freaked out. The idea of having a second infertility factor really got to me.

And now? Now that we’ve added a third, and one that could well require me to undergo more surgeries in the future? I’m just riding it out. I’m relieved to have the news. I’m happy that there’s an explanation for our bfns. (Happy about a diagnosis of endometriosis…who says infertility doesn’t play with your perspective on the world?!)

Another infertility factor? I can take this in my stride.

I’m trying to remember to add blogs to my blogroll when people are kind enough to come over and say hello, but I’m not super good at updating. I tend to rely on G.oogle reader to keep up with the blogs. All that to say that if you’d like to be linked from my blog, just let me know!

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9 Comments

Filed under Emotions, Endo, Medical issues

9 responses to “So what does endo do, anyway?

  1. I am just so impressed by the way you are taking everything in stride — the surgery, the recovery, the endo diagnosis. I strongly believe that these challenges will make us so much better as mothers, WHEN it happens. I am so glad you have sort of a new start this month, a clean slate if you will!

  2. autoimmunelife

    I don’t know all the reasons endo is related to infertility (and who does really), but I know one thing in my case that makes it less likely to happen once the endo comes back… my uterus gets contorted and pulled around by my bowels as it grows back together with them. An explanation I’ve heard in some women’s cases is that the ovaries and/or tubes get pulled from where they should be, and the eggs can’t get between them to become fertilized.
    Also hormones are really crazy with endo chicks…

    You are welcome to add me to your google reader and blogroll if you are so inclined… I also have infertility… I have endometriosis, lupus and a few other issues (not all related to fertility) so yah… it gets kinda crazy over there… :/

    J

  3. lola

    did you have an expert remove your endo? excision is best, some ob/gyns (who are not experts, even if they say it), laser it, but do not get to roots

    these are great sites, naprotechnology.com (look for info on fertility surgery)
    centerforendo.com
    endoexcision.com
    endometriosissurgeon.com
    erc.activboard.com/
    pelvicpain.com
    endo-resolved.com

    mary shomon has a great thyroid site and info on how it affects hormones

    nfp (natural family planning) works with testing hormones and bio-id natural progesterone (as seen on oprah)…it can help you achieve pregnancy….

    http://www.fertilitycare.org/

    johnleemd.com

    i didn’t fill the dishwasher for a LONG time post- op 🙂

  4. laura

    Essentially what happens with endo is that when you shed your uterine lining each month (e.g. regular menses), instead of expressing it all the way normal women do, some of it exits the uterus and makes a u-turn back toward your insides, attaching itself to other organs and tissue and creating adhesions. Then the next month when you get your menses, those bits of tissue/adhesions also become inflamed (because that is what that type of tissue is designed to do) but it is “stuck” attached to the wrong places and it tends to aggravate the areas it is attached to (such as the bowel) b/c it is a foreign body in that area. In some cases, the adhesions attach to the ovaries, tubes, etc and they become basically glommed together, for lack of a better explanation. So it is the adhesions (some people call these endometria, I think- I hadn’t heard that term before reading IVFC) that create the “toxic” environment. However, one of the big questions related to endo re: infertility is that the severity of the disease is not directly related to the effect on fertility. So you could have very severe endo and no trouble conceiving or you are almost equally likely to have non-severe endo and lots of trouble conceiving. On that front at least the causal link is not clear. That is obviously a HUGELY oversimplified explanation, FWIW.

    As for your other questions – likely the endo has been there for quite some time. There is some speculation that it is hereditary, but I don’t think it always is. In my case, my mom has it; we assume her mom had it but my mom was adopted so we’re not sure – although we do know her mom was not able to have any more bio kids after my mom and we assume that is related to endo. BCP can help manage endo but if you are having periods, then no, it is not entirely suppressing the endo. If you were on bcp continuously (e.g. skipping periods) for any/part of those times, then that would help to suppress the endo. And your lack of periods at all would also suppress endo, as it’s directly related to the inflammation and shedding of the lining that happens when you have your period.

    Anyway, I’m no expert, those are just my thoughts. Sounds like the surgery was a success, so that’s good news! I hope the rest of your recovery goes smoothly.

  5. Definitely take it as easy as you can. Even if you don’t think you need to. Your body is doing a lot of healing that you aren’t even aware of!
    One of the reasons I am going for my 3rd surgery in 2 years is that neither of my previous dr’s did excision surgery – they just burned the visible parts with the laser.
    Hormone disorders are very common with infertility and endo – I’m having my own checked right now. Luckily, if you can get some of the hormone’s in balance, endo may be affected in a positive way. Try to think of it not as you having 3 different disorders, because if your body is out of balance everything tends to get thrown out of whack. I’ve heard that treating thyroid problems can work wonders for a lot of people’s infertility! http://www.stopthethyroidmadness.com – if you want some more to read 🙂

  6. FYI…endometriomas and adhesions are not the same thing (from comment by laura)

  7. Springroll

    Turia, I have such mixed emtions for you right now…I’m sure you are feeling the same. To hear that they actually found something – I was happy for you because I’m sure that it gave you the sense that there really WAS a reason you’ve gone through the heartache…finally! An answer!
    On the other hand, I am so sorry that this is yet another issue that must be dealt with on your road to motherhood. Unlike the others who have commented, I know nothing about endo – I just wanted to let you know that my heart is with you. I hope that you feel better soon. Take care of yourself!
    P.S. Feel free to link to my blog! 🙂

  8. Hi! Here from LFCA

    I’m glad you are recovering well. I had a lap last week Tuesday and had mild/moderate endo removed as well as adhesions. Did you have adhesions? Apparently if endo is around for awhile the inflamation can lead to adhesions. I also had an endometrioma (chocolate cyst) on my ovary removed. I wish i had asked my doctor more but am going to write a list of questions for next time.

    I’m glad you are recovering well. All the best with your next cycle. This surgery definitely increases our chances of a BFP!

  9. laura

    Oh sorry – thanks for the clarification, callmemama. I mistook the endometria term as what I read cysts were called, not adhesions – I hadn’t heard that term at all before going to IVFC. Although admittedly my previous doctors thought they were more educated on the subject of endo than they actually turned out to be, so it’s not really very surprising.

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