Stage 1 Endometriosis

[Carolina88]

Hello there.

I have stage 1 Endometriosis, which means very minimal but I have alllllll of the symptoms possible and feel terrible

I feel like by having stage 1 shouldn’t be this bad...anyone else?

[Clairey007]

Hi,

It doesn't matter what stage you are you can still have all the symptoms. Stage 1 can have loads of pain and stage 4 hardly any, it depends on the person, the location of the endo and how much scarring/adhesions there are. I have stage 2 (confirmed this year on my second lap as I didn't know to ask after my first one three years ago), my surgeon said I meet all the criteria for that, but because it's not on my bowel yet, it's not stage 3/4.

I've been lucky in that I don't get much pain, I have a high pain threshold but not sure what impact that has, but I do suffer a lot with fatigue, and get bloating if I consume too much inflammation causing food/drink. I also have depression/anxiety which I think is exacerbated by endo (though I also think I've probably had both for most of my life). Prior to diagnosis 3yrs ago, I was getting a lot of pain in the first couple of days of my period, and was bleeding heavily, that was happening for a good year and a half (probably longer) before I first went to my GP, but my consultant suggested I have a coil to help control those things, and while I was initially sceptical, I decided to try it and haven't looked back! It took a while to settle, but it's completely stopped my periods, and does help with the pain when I get it.

It's nice to know what stage you are, but really it doesn't matter. Stage 1 or 4, you still have the symptoms, you have the condition, it still completely sucks!!!

Xxxxx

[Penguins_81]

Afraid the stage has no meaning on how much pain you are in. I was in far more pain years ago when the endo was less than I’m in now awaiting another surgery.

Listen to your body and take time out when you need it. I find reflexology really helps. Good luck and remember to look after yourself. Xx

[Mparstoy]

Hi. In some ways, the stage classification is counter productive and why many doctors find that they need to find a new way to categorize. There is no correlation between stages and pain.

You have Endometriosis, period, and with that there is a very important learning process of cultivating compassion for yourself and your body. It is like learning to take care of a baby, that is the amount of attention, love and care you need. It is a sacred, vulnerable and at the same time strong because if it also trying to find it's own way to manage the disease.

Please find the help you need and what works for you to manage the symptoms.

With kindness

Margarita

[Carolina88 in reply to Mparstoy]

Thanks so much! This means a lot

[tigerlily27]

Hi, I understand how you feel. I am in the same situation. I have just been diagnosed ten days ago with a stage one endometriosis. They also found major retrograde bleeding and the surgeon has blamed the pain I have on the bleeding and not the endo, he said it was very very small, they found it on my pouch of Douglas and my uterosacral ligaments. I have a follow up in six weeks but I'm a bit confused. I have been in constant pain for two years and I'm just hoping that I do have a diagnosis and they arent going to dismiss it all now because it's so tiny. Have you been diagnosed recently? Xxx

[Carolina88 in reply to tigerlily27]

I’m sorry but looking al large posts above, it doesn’t matter the stage and has no correlation with the pain. If you hav Endo you have Endo. I was diagnosed in May, they were able to remove some but some they could not :/

[tigerlily27 in reply to Carolina88]

I hope it has helped you to read that too. It has helped to re-convince me more. I really hope that you manage to get some relief soon from your pain. It's a shame they could not remove it all for you. Is more surgery on the cards for you? Or are you trying to manage with other treatment now? Hope you are ok. Thinking of you! X X X

[Lilac12]

Some people have stage 4 and they don't even know they have it because they don't get the symptoms. Pain doesn't suggest a stage of the endo, someone with stage 1/2 can have worse symptoms than someone with more severe endo. I hope you are feeling better soon. I know how awful it is x

[StefaniaJW]

Who told you you have stage 1 endometriosis? The stage cannot be determined precisely unless you've had excision surgery with an experienced endometriosis excision surgeon (either BSGE-certified or a Nancy Nook surgeon).

[tiger-cub]

I totally agree with stefania that you can’t be diagnosed with endometriosis unless you have a lap to see what’s the actual status internally

[Poppymum]

I’ve been diagnosed with endometriosis without a lap. You can be. I have an endometriomas in my ovary ( seen in ultrasound scan) so no lap needed in my case.