Is surgery the only way to confirm endo?

In the last year I have had increasingly long heavy periods with lots of pain. Sex has become difficult, and I find myself battling bowel problems more often. I also have now thyroid function. My ob/gyn has done three internal scans showing nothing endo wise but that is her only explanation for this. I have had a cyst on each scan, two were hemorrhagic and one was clear fluid but septAted. My options given on the 13th were birth control pills or surgery. I am currently waiting for my next cycle and next round of pain.
I guess my questions are, is there any way to be sure what is actually wrong here? Shouldn't endo show on a scan? The other part of me says I am 35 and have two kids. I know I am done having children so why go through any more pain. And if it IS endo, I have more possibilities of complications if I delay the hysterectomy. But then again what if it is NOT endo?
I feel like I am losing my mind in addition to the other typical endo signs I have!

I had numerous scans, ultrasounds (internal and external) and even a laparscopy and 2 D&Cs. It was only when I had my hysterectomy that they finally found my endo on the back of my ovaries. I knew it was there all along though - just had no proof.

I wish you well as you make your decisions - they are never easy, but lots of sisters here will probably have good info for you!

Hugs

My laprascopy showed I had endometriosis . I also had a lump removed back in 2007 near my caesarian scar that had endometriosis in it so I knew that endo was a possibility . I have had ultra sounds that show cysts on my ovaries that look like endrometrioma's. But for me a laprascopy showed a lot of my pain was endometriosis as well as a bulky uterus with either fibroid and or adeno.
Can you ask to get a laproscopy done if you haven't had one perhaps that will show more ? My gyno said after an ultra sound - external and internal a laproscopy was the next investigative step to look around !

I was so stunned that my options were birth control pills or surgery I said pills just so I could think things thru. I almost feel like she may as well just take my uterus as leave everything else if possible. I just need prep time, and to wrap a couple major deliverables at work. But I am worried she will get in there and say well, everything is fine, woman up and deal with the pain. I trust my dr, she is amazing. But this is no way to live, wondering when the next bout of symptoms will start. And no one has ever been in my belly before.
I can't help but wonder if this is related to some unexplained bleeding I had during my labor with my youngest. Who knows, may e the pill will work and I am just getting ahead of myself!

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Originally Posted by 2legittoquit I guess my questions are, is there any way to be sure what is actually wrong here?

That depends on what is wrong.

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Shouldn't endo show on a scan?

No it does not.

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The other part of me says I am 35 and have two kids. I know I am done having children so why go through any more pain.

Removing the uterus affects more than just fertility, can cause its own pain issues, and may not resolve pain issues. For one, it is not a cure for endometriosis.

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And if it IS endo, I have more possibilities of complications if I delay the hysterectomy.

Not necessarily at all.

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But then again what if it is NOT endo?

Exactly! What if the issue is not gynecological related at all so that the hysterectomy doesn't even begin to address the issue?

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I can't help but wonder if this is related to some unexplained bleeding I had during my labor with my youngest.

If you had internal bleeding, yes it could. For one, internal bleeding can cause some inflammation which can lead to adhesions. Over time, those can shorten and cause increased pain issues. By the way, adhesions don't tend to show up on imaging tests either.

That all said, I think you should be keeping a very detailed symptom diary to share with your medical team. This can help them determine what might be going on and if a laparoscopy is the right next step.

You are doing the right thing by asking questions and considering your options. You should also know that if you do have endometriosis, your local OB/GYN may not be the best one to treat it. For one, they often are not taught a removal method that is the most effective.

You might want to take some time to go through some of the resources linked to the top of this forum, then sit down and talk to your doctor again. If you have questions, feel free to post them and we will do our best to answer.

Just wanted to update, I discussed doing a diagnostic surgery via DaVinci with my dr. We'll look for endo and she wants to leave my uterus if possible. Her hope is to do an ablation and tubal ligation while cleaning out any endo she finds. Does this sound reasonable to you ladies? I worry the ablation isn't a good idea when there is endo, I have seen that in a couple places.
Thanks for the help, I don't have any friends who have experienced this I can talk to in real life. I do know someone who had an ablation for heavy periods, but no endo issues.

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Originally Posted by 2legittoquit Her hope is to do an ablation and tubal ligation while cleaning out any endo she finds. Does this sound reasonable to you ladies? I worry the ablation isn't a good idea when there is endo, I have seen that in a couple places.

I don't know what you have seen, but an ablation is not an issue with endometriosis though it doesn't treat endometriosis either. An ablation can be an issue if you have an adenomyosis diagnosis.

Endometriosis exists outside the uterus so your surgeon would be cleaning that up during the diagnostic part of the surgery. An ablation is done vaginally and removes the lining inside the uterus which can then minimize or eliminate periods.

I am not sure why you are also having the tubal but some doctors prefer to do some type of permanent birth control with an ablation as a pregnancy following an ablation is not generally viable and could be dangerous.

If you have both an ablation and removal of endometriosis, you could eliminate bleeding issues and endometriosis issues.

The key will be how your surgeon removes the endometriosis and if she is able to remove it all. If any of it remains, it could continue to cause problems. However, I think what is planned for you is a good start. The only thing I would add is see an endometriosis specialist if at all possible.

She said the tubal was because of the ablation, which is ok by me. And I am sure my husband will be heartbroken to skip the vasectomy we talked about him getting. Lucky guy.
Thanks for the info about adeno VS endo on the ablation. I will make sure to ask about that.