endo question from occasional poster

pubgirl1976 · March 2010

Hello ladies...

I am wondering if it is common to have endo without symptoms (and I mean zero symptoms)? When I google it comes up as a potential, but doesn't give any idea if it is a common or rare occurance. I feel like I've seen several ladies on the message boards over the years say they have it and had no symptoms - so I'm really just trying to figure this out.

Back story: TTC since January 2008. Everything has come back normal. I have no symptoms of endo except a family history (mom and grandmother). My mom's was so severe she had a hysterectomy at 36. I think our next steps should be a lap to see if there's endo, but my RE, family doc, and naturopath all say it's highly unlikely. My RE wants us to try another IUI...but since we're OOP, I'd really rather not spend $$ if endo is going to prevent things from happening properly anyways.

Anyways, any information on endo without symptoms would be helpful asI'm really trying to advocate for myself with my RE. Thanks

lizardknitter · March 2010

I can say that I never had a SINGLE symptom. It was discovered during an exploratory lap to see if any reason could be found for IF. Regular periods, no pain, no spotting, nothing!

HTH

jennype · March 2010

I, too, would love to hear some feedback. I am also trying to decide rather or not to do the lap. However, my lap would be oop because we have a 5k deductable. No side effects other than mild cramps on cd1.

albjag · March 2010

I had no signs- just infertility. my periods were short, barely any camping and not heavy at all. i had definite ovulation pain around o time, and then off and on ovulation pain like twinges during my 2ww.

i was in the same boat as you. every single test was normal and we'd been trying for 2 yrs. I also am all OOP- but surprisingly my insurance would cover diagnostics including lap. but once i progressed to any IF treatments, they wouldnt cover a lap.

I had a choice of a lap or try IUI's. I thought long and hard about this, and originally was not going to get the lap. but i decided to get the lap- bc insurance covered it, and i wanted to see if they could find anything that might negate the IUIs. If i had no insurance coverage for it, no way would i have done it. b/c i'd rather have put the money towards IVF.

they did find stage 2 endo around my colon/uterus but not affecting my ovaries at all - they removed it at the lap. I really dont think this was the cause of my IF due the low stage of my endo and the location of it. plus, I haven't gotten pg yet, and my lap was almost a year ago.

etoyama · March 2010

I'm glad you asked this because I've been wondering the same thing. My half-sister has it, and I'm wondering if that could mean I have it, too. I'm in the same boat as you: no symptoms, but no other explanations for my IF...

LCB34 · March 2010

Endo has to be in specific places (ovaries and or tubes) to impact your fertility.

I would imagine with no symptoms, your chances of you endo being the cause of your IF is very slim. While it is possible, I would imagine the chances are low.

I had tons of symptoms - and tons of endo (stage IV) everywhere including in one ovary (I lost part of my ovary due to the surgery) and completely covering a tube to the extent that it is no longer useful.

If three doctors are saying a lap isn't necessary, I would trust them.

Tricia879 · March 2010

I have suffered from endo for years, my first lap was when i was 20 I got pg at 21 with my first child. I had a LOT of symptoms and very little endo. I also just had another surgery in 2008, found a lot more endo and got rid of it and am now pg. My mom had endo with no symptoms and never ruined her chances of conception, but if you are genuinely concerned about it I would say do the lap, it could even be something else. Although as PP stated endo only effects if in uterus or tubes.

schoolsoutbride · March 2010

LCB34:
Endo has to be in specific places (ovaries and or tubes) to impact your fertility.

I'm not sure I agree with this. I don't think they know enough to say this for sure. For instance, endo adhesion release estrogen, and they don't know how much that messes up your system.

That said, I'd be hard pressed to have a lap with zero symptoms. You are about 6x (I think that number's right) more likely to have it with a Mom who had it, though.

Do you not have any AF cramps? No IBS symptoms? Unexplained back pain? Nothing? I didn't realize IBS was a symptom of endo until a couple years ago, which is when I put the pieces together that endo was probably an issue. It was only stage 1/2, but it was enough to have my left ovary stuck to the back of my uterus (away from the tube)

LCB34 · March 2010

schoolsoutbride:
LCB34:

Endo has to be in specific places (ovaries and or tubes) to impact your fertility.

I'm not sure I agree with this. I don't think they know enough to say this for sure. For instance, endo adhesion release estrogen, and they don't know how much that messes up your system.

I agree that it could have minor impacts but, it is really hard for endo to be the only reason you are dealing with IF unless it is on your reproductive organs.

Per the two surgeons that operated on me, endo on say your bowels or bladder only may cause hormone levels to be a bit skewed but will not really impact your fertility as it is not present on your reproductive organs.

pubgirl1976 · March 2010

Thanks so much for all of your feedback ladies - as always it is much appreciated. Yep, I really have no symptoms...minimal AF, no LP spotting some cramps, but nothing 1 tylenol doesn't fix, and no other pain throughout my cycles. The mention of IBS is interesting as I was once diagnosed with that...but after changing my diet and managing my stress levels it has pretty much disappeared. May be worth mentioning to my RE though. Thanks again!

Mr&Mrs.B · March 2010

I just recently had a lap done 2 weeks ago. I had minimal symptoms. My period was almost non-existent (1-2 days with the old blood bleed the rest of the week) but some pretty significant cramps. They did end up finging stage 1 endo, and removing 2 huge cysts that were blocking both tubes--even though my HSG in Dec 2008 came up clear! I would probably recommend the lap, just so you can get some answers. I know how frustrating it can be when everything else is NORMAL!

sweetky_06 · March 2010

My RE determined I had a retroverted uterus, and he said that in people with no other explanation for their IF, those with a retroverted uterus had endo 50% of the time. My only other "symptom" was spotting for 4-5 days before AF.

I had stage 2, almost stage 3 endo on my ovaries, bladder, and outside of my uterus.

Was the endo the cause of my IF? Well, the RE thinks that my eggs weren't ever making it to my fallopian tubes because of the endo.

Luckily, I had a low insurance deductible, so when the RE recommended the lap prior to pursuing IUI, I chose to go in that direction without hesitation. Good luck with whatever choice you make!

Lara09 · March 2010

Just wanted to say that I have stage 1 Endo (affecting tubes and ovaries) and had ZERO symptoms.

Good luck with your decision!

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