Endometrioma Question

CreechMommy

I recently went to the Dr. to check up on a cyst that was discovered during my pg.  He said the cyst is most likely and "endometrioma."  I discussed my charts with him and we both agreed that I am ovulating and then he told me it will likely not interfere with conception.  

I felt good about the appointment, but like an idiot, I went online to research it more. 

I have little to no pain associated with it (everywhere I'm seeing that it usually is really painful) and that it is associated with infertility.

My question to you ladies is - have any of you had experience with this and if so what did you do?

*Note: I really do like my Dr. and I trust him when he says that he's not worried about it impeding fertility.  I'm just looking to learn more about this from other ladies who have been through it.  

meredithcarole

I had one that they thought was the corpus lutem on my ultrasound before my D&C. There was some slight pain at the time in the area, but I think that may have been the side the fetus had implanted on, too. I was told it would resolve itself and not to worry about it. I don't know how they know one type from the other without further testing, but I haven't had any pain (other than occasional O pain) since 4 weeks out from the surgery.

BookishMomma

Hi Creech. I'm sorry you're dealing with this. Dr. Google is very scary when it comes to endometrioma (otherwise known as "chocolate cyst"-- whatever you do, do NOT do a Google images search. YUCK).

I also have an endometrioma on one of my ovaries. My RE saw it via ultrasound during a hysteroscopy exam in July as part of my fertility work-up. There is no way to know for sure if a cyst is an endo cyst without doing a laparoscopy and testing the tissue. But my doc said it looked like an endometrioma, and endometriosis is one of his areas of specialty, so I'm inclined to trust his opinion. He advised against me getting a laparoscopy because it's not really causing me much pain or discomfort, is relatively small (2 cm), and with my age (35), going in and messing around surgically with the ovary could end up doing more harm than good and could negatively affect my ovarian reserve. 

Like you, I had no idea I had the cyst until it was pointed out on ultrasound. After the fact, though, I now know that the "ovulation pain" I get on my right side is most likely related to the cyst. 

I had a ton of questions for my RE after he found the cyst. I asked him: if I have an endometrioma, does this mean I have endometriosis? He said, generally, yes. An endometrioma IS an endo cyst on the ovary. But there's no way to know 100% for sure if the cyst is endo without getting a lap. In women who have endometriomas, about 75% end up also having endo elsewhere in the pelvic area, but it's not visible by ultrasound.

In my case, he recommended that we just monitor the cyst. He was not concerned about it having an impact on the medicated IUI cycles that we are planning to do. He did say that, if we get to the point of IVF, it could have an impact on how many eggs are retrieved, since the affected ovary might not have as many good eggs. 

Did your RE say how big the cyst was? Do you know if any women in your family had endo? My mom had endo, but didn't know it until she was in her 50s. She had 3 kids before that without any problems. 

HTH!

CreechMommy

@BookishMomma I'm actually not seeing a RE.  Our m/c was our first pg and I've just been going to a regular OBGYN to have the cyst monitored.  It fluctuates between 6 and 5 cm and at one point measured 3 cm (don't know if this was a fluke or if it really did shrink that much).  

My Dr. said he wants to hold off on surgery unless it starts causing severe pain or if it takes us longer than 6 mos to get pg.  

It's all just so scary - makes me wonder if this had any impact on our m/c and if we get pg will this cause it to happen again.  

I, of course, didn't think of any of these questions when I was at the Dr.  

On my sheet it says "possible endometrioma" so I guess it's like you said - there's no way to know until testing is done.  

I'm not sure if any of my family has endo.  I wouldn't be surprised if my sister does because she gets really bad cramps around her period.  I'm so surprised by this *possible* diagnosis, because my periods are super regular (always have been) and lately my cramps have been getting less severe - not more severe like Dr. Google (I love that btw) suggests it should be in ppl with endo. 

I'm just feeling the crazy right now.  We had this appt during our TWW so of course I go from "this could be the month" to "it could take longer than 6 mos" 

meredithcarole

CreechMommy said:

@BookishMomma I'm actually not seeing a RE.  Our m/c was our first pg and I've just been going to a regular OBGYN to have the cyst monitored.  It fluctuates between 6 and 5 cm and at one point measured 3 cm (don't know if this was a fluke or if it really did shrink that much).  

My Dr. said he wants to hold off on surgery unless it starts causing severe pain or if it takes us longer than 6 mos to get pg.  

It's all just so scary - makes me wonder if this had any impact on our m/c and if we get pg will this cause it to happen again.  

I, of course, didn't think of any of these questions when I was at the Dr.  

On my sheet it says "possible endometrioma" so I guess it's like you said - there's no way to know until testing is done.  

I'm not sure if any of my family has endo.  I wouldn't be surprised if my sister does because she gets really bad cramps around her period.  I'm so surprised by this *possible* diagnosis, because my periods are super regular (always have been) and lately my cramps have been getting less severe - not more severe like Dr. Google (I love that btw) suggests it should be in ppl with endo. 

I'm just feeling the crazy right now.  We had this appt during our TWW so of course I go from "this could be the month" to "it could take longer than 6 mos" 

I think getting a second opinion would help.

rmpar29

Hi @CreechMommy!

I have Endometriosis diagnosed via Laparoscopy in 2002.  At this time, I was having completely normal periods (of course I was on BC so that could be why) and normal cramps.  Over the years, the pain got worse and before my first pregnancy, I would get stabbing pains during the first day of my period (like I would double over in pain), but no pain for the rest of my period.  My cysts grow on the back of my bowels, so it does not impact my fertility.  My OB, at the time, said that it depends on where it grows and how severe it is on whether it can cause problems.  I would think that one of the ovary might cause a problem, or might not.  When I asked the best treatment for Endo, my OB responded "pregnancy".  The lack of estrogen during pregnancy helps to shrink the cysts and can actually "cure" someone of Endo.  This could be why your periods aren't as painful as they were before. 

I would like to point out that I haven't had any other Laps to check on my Endo since then.  When I started going to the RE an HSG showed that my uterus and tubes were fine, so he didn't feel it was necessary to repeat a Lap.  I have a number of books on Endo, but I haven't read them in a very long time.  If there's any info you would like, I'd be happy to look through them before you, or send them to you to borrow. 

Stay away from Dr. Google...he's always a bit scary the more you dig!

ETA: I do not know of anyone in my family with Endo either, although my aunt was unable to conceive, but that was way back when and they never did much testing to figure out why.  It's possible that this was her problem.

CreechMommy

@meredithcarole He is my second opinion lol.  My other Dr. wanted to do surgery right away.  I really do like my current Dr.  I think Google just scared me.  I go back to him in a couple months for a follow up so if we're not pg by then, we will have to consider some other intervention.

CreechMommy

@rmpar29 Thanks for the info!! 
My cramps actually were getting less severe and periods were getting lighter even before I got pg so it makes it even more confusing!!  Since the cyst was discovered during my first u/s during pg, there's no way of knowing how long it was there before!  I have always had regular cycles and only in middle school/high school were my cramps ever really bad (that's 8-10 years ago) Once I hit age 20, my periods became 3-4 days long, average to light bleeding and 1 day of mild cramping.  

I know I'm not a Dr., but something in my gut tells me something is off here.  But then again my Dr. did say some women never know they have endo until it's discovered on accident lol.  

Google is good for one thing - I've seen some stories of ladies with endo having perfectly healthy babies so I will focus on those and keep doing what I know to do.  And hopefully this stupid cyst doesn't get in the way of my Rainbow!

BookishMomma

5 to 6 cm is a fairly large cyst. To put it in perspective, a human ovary is on average about 4 cm x 3 cm x 2 cm. I don't mean to scare you, but I do think you should seek a second opinion. It may not be the case that you need surgery, but there are other options (hormone suppression to shrink the cyst, etc). I don't know a ton about all the options, but I think it would be worth going to see a doctor who has some specialty in this area. I don't think it matters so much whether the doctor is an RE (though that would be my preference) or an OB, so long as they have experience with treatment and managing endo. 

The great news is that you are quite young and there are lots of success stories of women with endometriomas, both here on TB and elsewhere, who have gone on to have healthy pregnancies. 

***successful pregnancy mentioned below***

On a personal note, I believe I've had an endometrioma for a long time, even though one was only recently discovered (or suspected) on ultrasound. I think that either birth control pills (which I was on since I was 18 before TTC) or being pregnant kept the endo suppressed for many years. During my first (and only successful) pregnancy, my doctor noted an ovarian cyst which, like Meredith said, my OB thought was a corpus luteum cyst. I had no complications with it. 

Again, with my last pregnancy (the one that ended in D&C), there was a cyst on my ovary that the tech noted as "hemorrhagic corpus luteum cyst." I think this bleeding cyst was actually the endometrioma my RE saw. I guess what I'm trying to say is that I think the cyst has been there for a while, growing and shrinking based on various hormonal fluctuations, but that no one identified it as likely endo until I went to the RE who sees a lot of endo and can identify it. 

eta: with my last m/c the cyst was not what caused it! It was a chromosomal abnormality (45x). My 2 prior m/c were too early to know the cause.

CreechMommy

@BookishMomma This is the 2nd Dr. I've been to about this.  My first Dr. wanted to push me to surgery right away.  I like this new Drs. conservative approach.  I go back in early Dec. for another checkup so if nothing has changed by then, we will be looking into some other options.  

BookishMomma

Oh, OK. I didn't realize this was the 2nd doc you'd seen. December isn't too far away, so waiting and seeing until then seems reasonable. I hope it shrinks!

CreechMommy

@BookishMomma I do too!!!  Thanks for your advice