"Stage 1" Endo - I don't even know anymore....

[rachel239]

I was diagnose yesterday with stage 1 Endo. I'm full of questions now........I thought I'd educated myself on what endometriosis is, but I realise now that I'm confused again.

My Endo has rendered me incapable of moving 3 times in the last year and a half. I get frequent mid cycle pain and painful cysts but I barely even notice the discomfort anymore because I'm so use to it. My family think I'm cured now because I've had a patch of Endo treated.........but I don't think they understand what it is. In fact, I'm pretty sure most of my family are pretty sick of me trying to tell them what it is.

I feel like a bit of a fraud. How can I possibly compare to the "real" Endo sufferers if I "only" have stage one Endo? How do I make my family understand what Endo is? How can I let my female relatives know that it's not "just a normal period" and that I don't "just have a low pain threshold"? Should I change my diet in order to prevent further flares just in case my Endo hasn't been treated effectively?......I could go on.....I feel so lost

[Tboag]

Firstly please don't feel like a fraud,

Endo has a lot to answer to, and unfortunately you don't have to have stage 4 to be in terrible pain, and some ladies have stage 4 with out many symptoms,

I would find something online, endo sites, that you relate to and if anyone want to know more, show them,

Where was your endo removed from, ?

Are you under a bsge specialist centre?

Xxx

[rachel239 in reply to Tboag]

Thanks for your reply! It was removed from under my left ovary and I'm not under a bsge specialist xx

[Hidden]

Oh gosh, don't feel like that. The staging thing seems a bit silly really and of no consequence. I have stage 4 and I do not have the pain that others describe. You can have very little and have excruciating pain. What's important is that you get referred to an endo excision specialist who can remove it all. Google bsge and find your nearest. You are a real endo suffer and you deserve to be treated as such.

[Hidden]

I don't think they really use the staging thing in the uk do they? It's never been mentioned to me, I've seen three different consultants!

If you are in pain then that pain is real, which is what is important here. If I were you I'd be returning to my GP and getting a referral to a specialist. Be persistent and forceful!

[rachel239 in reply to Hidden]

My gynaecologist didn't say anything about stages.....she said I had "a little under my left ovary" like it was no big deal haha......I guess I just applied the staging to make my family understand xx

[rachel239 in reply to rachel239]

I also don't feel like I have much more persistence in me....after all, what more can they do? Xx

[rachel239]

I pretty much always have mid-Lowe back pain and they found the endo under my left ovary. Thanks for your reply xx

[Hidden]

You're a bit rude! I am seeing one of the best endo specialists in the UK. He is NOT a general gynaecologist. As I understand it, it's an American system.

Do you comment on all the replies that are (in your opinion) ridiculous?

[Hidden in reply to Hidden]

It's of no consequence if someone decides you have stage one endo and you're in more pain that someone who is stage four?!!

[Hidden in reply to Hidden]

Thanks 😁!!

[Hidden in reply to Hidden]

I was going to say that I am shocked. But I'm not. I think it's time I said goodbye to this forum and stick with others where people are much more open minded and interested in discussing other people's opinions, rather than just railroad them with their own. You are not in the medical profession and whilst you have a wealth of knowledge you ought to think very carefully about what you band about as fact (see you own comments about the rules of this forum below).

[rachel239 in reply to Hidden]

I'm sorry this has happened on my post 😕🌻 xx

[Hidden in reply to rachel239]

Don't worry Rachel!! It takes all sorts!

I hope that you get some relief from this horrid disease soon. Please message me if you need a chat. I have found lots of information elsewhere that has lead me to someone who can finally help me!! X

[Hidden]

You're missing my point. Rachel felt like a fraud because she was told it was only stage one. Her pain is real and that is what is important.

[saha84]

Hi Rachel,

Please don't feel like a fraud. It is very easy to when people around you don't understand the physical, mental and emotional strain this disease can cause but you did the right thing reaching out so other people can reassure you that you're not alone!

I had a lap last year and was diagnosed with stage 1. I am about to go through another procedure but with a specialist gynaecologist who is like a breath of fresh air. He told me not to let the staging fool me into thinking stage 1 was "mild" and wouldn't mean a lot of pain. He said to compare it to a paper cut on your hand. He said that a paper cut can be the smallest of things but they're so painful because your hands are full of nerve endings and are so sensitive. He said it's essentially the same thing - even though the endo can be quite small, it grows in very sensitive areas and this causes considerable pain.

Around the time I had my last operation, another lady I work with was also diagnosed but with stage 4. She was diagnosed after complaining of minor back pain and the endo had infiltrated her bowel! She had no idea! Me? I was off work for around 8 weeks before my surgery with diarrhea, extreme fatigue, terrible stomach and back pain, leg pain, my skin was covered in acne and I was emotionally and mentally a mess!

I hope this makes you feel better! You are not a fraud!!!

[rachel239 in reply to saha84]

This is the most helpful and reassuring thing I've read so far. Thank you, you're a star 🌟 I hope everything goes well with your treatment 💕🌻 xx

[saha84 in reply to rachel239]

Not a problem! It's so easy to feel alone or at a loss as to what to do. My partner for the most part is really good but sometimes he gets incredibly frustrated with my lack of energy or the fact I look like death warmed up sometimes and all I want to do is curl up with a hot water bottle or sleep! 😀

In regards to your question about diet, there is another woman on here that goes by kiwi medic and she has seen very positive results with a change to diet. I am also trying this but she said it kind of has to be all or nothing. It's such a drastic change - sugar, dairy, wheat, meat, caffeine, etc and so many foods that seem innocuous but actually have ingredients that you need to avoid. I tried to go at it gung-ho but kept failing so I'm taking it a step at a time, finding replacement foods for things I would normally eat and trying new things. It could be worth a try.

Good luck with everything. And please lean on the community here for those days that are tough or you feel lonely. There are a lot of very supportive women on here! xx