Silent endometriosis?

zeynsom · July 2014

After one failed IVF and current Hashimoto thyroid problems, I wanted to address my concerns with an reproductive immunologist before moving forward with the second cycle. I have a standing appointment for late September with Dr. KK in Chicago. In the meantime, last night I filled out the new patient forms for Dr, Braverman in NY, another well-known RI. He called me himself today. He told me that its is very likely that I have endometriosis. How is that even possible? He thinks that because I am only 34 and have low AMH (0.4), high FSH (16 at some point), and Hashimoto, it is very likely that I have endometriosis and that it needs to be removed before I can successfully get pregnant. Has anyone had this "silent" endometriosis problem? I do not have any symptoms (pain or intense bleeding), just my hormone levels.

zeynsom · July 2014

Thanks @IFinTN Yes, he wants to do a lap and tons of bloodwork to figure out what's wrong with me. And then possibly surgery if they can remove it or some other treatment (probably like yours). How was the lap? Do you get anesthesia? How long does it take to recover from it?

Nurisa31 · July 2014

I have stage four endo I never knew that it could be silent. I have always had pretty bad periods so I knew something was wrong at a young age. I've had 2 laps done before that's where they usually see the severity of it.

pblge · July 2014

Hmmmm, both my REs say surgery for endo isn't recommended unless there's pain or structural interference with reproduction, like endometriomas. I know this guy is supposed to be one of the best in the country, but it's interesting that he disagrees with what otherwise seems like the common guidelines of practice. Have you ever had any indication that there's something wrong in your ovaries?

I had a lap done because I had nonstop pinching pain that the RE was pretty sure was endo. Never had any pain or symptoms before I started TTC. 8-|The only endo I had was exactly where I felt it. I've been wondering if it's back, but new RE said he wouldn't operate unless the pain was more severe.

And, yes, the lap was relatively easy, but no picnic.

airidh80 · July 2014

The severity of endometriosis has no bearing on the symptoms experienced; meaning, you can have mild endo and be hellaciously ill, or you can have severe endo and feel nothing at all. I actually haven't ever heard or read anything about endo causing low AMH, either... if anybody has any good research on that, I'd be interested to see it.

I would, however, be very, very wary of any RE or OBGYN who calls you up and says, "You have endo. Let me cut you open." It took me a long, long time to learn that lesson, and I've 3 laparoscopies and 1 laparotomy to show for it. Surgery is not always the answer, and it can in fact cause additional problems (eg, adhesions/scar tissue that can make it more difficult to get pregnant.) It's worth discussing with any other REs you're consulting, but I wouldn't run headfirst into surgery without some serious forethought.

zeynsom · July 2014

Thanks all. I think it is more about Hashimoto. That is, because I have Hashimoto, it is likely that I have endometriosis, and as far as I understand, Hashimoto and the resulting endometriosis increase my FSH (and hence reduce the quality of my eggs) and reduce my AMH (and hence reduce the number of eggs I have). He claims that if I have endometriosis and he removes it then my egg quality (FSH) will greatly improve. He did not say much about AMH and egg quantity though.

przemosbabe · July 2014

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mm29 · July 2014

I've never had painful periods. Starting with an OBGYN I was seeing at 26 yo. I expressed concerns regarding my periods, and I spoke to RE's 1-4 about my cycles. I did not mention my periods to my current RE, because every other doctor brushed it off. Well, after my last failed cycle I told my RE concerns I had with my periods (pre-period spotting, and blood clots), she said that it was symptomatic of Endo. I had a diagnostic lap and sure enough she found endo and treated it at that time.

shelbeans82 · July 2014

I never had any symptoms and was found to have 2 small endometriomas after starting injectibles for IUI's a little over a year ago. My RE has never recommended a lap to me as I don't have symptoms and the endometriomas don't interfere with stimming. I agree with @pblge and @airidh80 and be sure you want to proceed with surgery before doing so.

emmuffy · July 2014

I have what look like possible endometriomas, but no symptoms such as pain. It's possible I have endometriosis, but given I don't have any real symptoms of it, I chose not to proceed with a lap and instead just move on to IVF.

LO95 · July 2014

In my case, my AMH is fine and that has yet to serve as a marker of Endo.

I will say that I felt great for 26 years without any problems- regular cycles, no excess bleeding, etc. (This year, on the other hand, is another story. Things fell to shit this year in terms of pain, which is what got my laparoscopy set in motion.) I might try to find out if your mother, sisters, aunts or grandmothers have Endo. It seems to run very strongly in families.

In my case, my Endo is mostly in the form of erosion and there was nothing to be done for me in terms of helping pain or affecting fertility. But some women do have luck with laps and pregnancy.

zeynsom · July 2014

Thanks all! @mm29 I did not know pre-period spotting and blood clots are symptoms of endo! I have both for the past 16 months since I stopped taking BCPs.

I agree with @pblge and @airidh80 too and am scared of jumping on everything recommended but you probably understand what I am going through. I could not sleep last night after Dr. B's phone call. I keep thinking what if there is an endo and it negatively affects my chances. Without going in we would not know and I may not have much time left to try with my own eggs (given my low AMH). I am torn, very depressed, and wish that somebody tells me for sure what I should do.

airidh80 · July 2014

zeynsom said:

Thanks all! @mm29 I did not know pre-period spotting and blood clots are symptoms of endo! I have both for the past 16 months since I stopped taking BCPs.

I agree with @pblge and @airidh80 too and am scared of jumping on everything recommended but you probably understand what I am going through. I could not sleep last night after Dr. B's phone call. I keep thinking what if there is an endo and it negatively affects my chances. Without going in we would not know and I may not have much time left to try with my own eggs (given my low AMH). I am torn, very depressed, and wish that somebody tells me for sure what I should do.

Talk to your other REs. I agree with PPs that surgery is typically unnecessary for endo unless it's causing structural defects or cysts that interfere with conception, OR it's causing pain/illness that interferes with your day-to-day life. But talk to your REs and get their opinions... I truly believe that's your best route.

GL! *hugs*

tptbabe · July 2014

Not endo related, but have you had your vitamin D tested? Hashimotos can cause Vit D malabsorbtion, which can artificially lower your AMH. This was the case with me, and once my levels were within range, my AMH reading came up as well. Just a thought!

My ND thinks I have endo, but I haven't had a lap done. I suspected it long before she brought it up, but the RE doesn't feel like it's affecting anything if that's the case. The pain is tolerable most of the time, and the bleeding is only really bad for a few days (we're talking adult diaper wearing bad) so I'm not too concerned about it. I might bring it up again at our follow-up next month, but that will depend on the results from our other testing, since we may or may not cycle again.

zeynsom · July 2014

@airidh80 Thanks, I will do that, although I know that they will say don't do it. The tug of war between REs and RIs are well-known. Dr. B has a lengthy video on his web-page explaining why even the silent endo must be removed. He argues that endo (any kind) produces natural killer cells that may attack the embryo (especially if you have autoimmune diseases like I do). He claims that removing endo will improve the egg quality, drop FSH, and increase the chances of implantation, even if it is silent (without any symptoms).

przemosbabe · July 2014

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airidh80 · July 2014

I'm really, really hesitant about whether I should even post this comment. I feel like I'm starting to come off as a "NO SURGERY EVER FOR ANYONE BECAUSE I AM ALWAYS RIGHT" zealot, and I truly don't mean to be that way. I don't mean to diminish other peoples' positive experiences with surgical endo removal, at all.

But here's what I want to say: I had MANY doctors, for MANY years, tell me that I needed to let them open me up. I needed to let them dig around in me, because they could do what the other doctors couldn't do: they could fix me. They could make me better.

That excision surgery? I've had that (2nd surgery, 1st laparotomy). One of the best surgeons in the country performed it. It was 5 hours long, and when I woke up, the doctor told me he had "cured" me.

I was back in the hospital four months later, having a laparoscopy to remove a massive hemmorhagic cyst, and plenty of new endo regrowth (3rd surgery, 2nd laparoscopy). And now here I am (one additional laparoscopy later), with so much scar tissue that my tubes are blocked, my uterus is plastered to the left side of my pelvic wall, and I live with daily pain.

My point being, it is virtually impossible to "cure" endometriosis surgically. You CAN temporarily abate it, at least long enough to get pregnant immediately. That would be ideal! But if it doesn't work out, now you've got scar tissue to deal with, on top of any endo regrowth.

My experience is not everyone's experience, but this shit can and does happen. This is why I'm so, so leery of surgical intervention for endo, unless there's no other choice.

@zeynsom, I really don't mean to be a super-downer. I just think it's really important to understand the potential negatives of surgery. Hell, if my FETs don't work out, maybe I'll give this guy a call, too! I wish you all the best of your upcoming cycle. With any luck, you'll get knocked up and none of this will matter!

zeynsom · July 2014

@airidh80 Thank you for your open and honest post! I really really appreciate it.

zeynsom · July 2014

@mm29 just curious, how did your RE treat your endo? Did they do a lap and removed it or some other way. I believe that you are DOR as well like I am (and I am very sorry if you are not). If that's the case, I'd like to know what the treatment was. Thanks!

mm29 · July 2014

zeynsom said:

@mm29 just curious, how did your RE treat your endo? Did they do a lap and removed it or some other way. I believe that you are DOR as well like I am (and I am very sorry if you are not). If that's the case, I'd like to know what the treatment was. Thanks!

She did a diagnostic lap to confirm the diagnosis, and while she was in there she did an excision of the endo that was found. She did tell me before the lap, it wouldn't necessarily mean I would have a greater chance to get pregnant if it was found and excised, but it would give us some answers.
I am DOR, but the DOR was not caused from the endo, there was not any endo on my ovaries or tubes.

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