Experiences, please?

[JustEndoThings]

Hi all,

Over the course of the last 6 years (at least), I have been literally housebound with severe and disabling symptoms. After repeatedly requesting tests and insisting something ain't right, I finally had my concerns confirmed with a diagnostic lap that took place 2 days ago. Th surgeon confirmed I had endo, but stage 1, and only 1 (one) lesion was found. He advised they also had to separate parts of me that had fused together.

I guess I'm trying to figure out if all this agony and hellishness could have been caused by 1 lesion? Has anyone had anything similar? I don't know, it just doesn't seem right.

Thanks in advance for any and all information you can give, and keep fighting for your answers.

[Chronic21]

I'm not sure if the Dr's before diagnosis explained endo and the stages to you properly. Hopefully this will give you a bit of a better understanding.Stages of endo 1 to 4 are generally to do with endo in the abdomin area stage 5 is an unofficial stage used to classify endo outside of this.

The stages of endo does not in anyway correlate to the severity of symptoms such as pain etc.

Endo is extremely difficult to remove, if you have been a lucky person with your surgery and managed to get an actual surgeon who specialises in endo removal then they may of found all the current endo masses that is visible to the eye. However even with a skilled surgeon some endo may of been missed, it is such a difficult disease.

That 1 lesion that they said they found did they tell you the size of it eg what area it covered?

You said they said they had to basically infuse parts of you, this can in itself cause a lot of pain. It may seem like such a small thing but think of it this way.

So how my Dr explained it was think of pain like this ypur nerves are constantly communicating with your brain any change in this communication sets off an alarm bell eg you burn your finger tip and your brain gets a signal that it has lost communication with some nerves due to damage so it "hurts" you say ouch... a similar thing happens when you gain nerves it's something new.

Now think of the lisions and the fused area like this it's something there that shouldn't be that can cause the pain. It can also put physical strain on anything it's connected to.

So in answer to your question yes 1 lesion ca n cause all this hassle.

I'm hoping this has helped explain it a little more, if it hasn't please ask more questions and I'll try to answer them if I can.

Please not I'm not a Dr, I'm someone with stage 2 endo I had some organs fused together and had done alot of research so I could get diagnosed so I asked alot of questions,

[USgalwthendo]

I agree with Chronic21.any stage of endo can cause various levels of pain, so stage 1 can be extreme and someone with stage 4 can feel no pain, its really different for each person. my doctor told me this at time of my surgery 9 years ago. I'm surprised they told you are stage 1 when not only one lesion but also parts fused together, that usually at least stage 2, but either way, it can definitely cause all the pain you have been experiencing, even with just one lesion.