Endo stages

[DAML8]

Hi.

I see a lot of you mention what stage your Endo is. I was diagnosed 5+ years ago but no Consultant has ever mentioned what stage mine is. How can I find this out? 🤨

[Moon_maiden]

Mine hasn’t either and I didn’t ask and wasn’t tempted. It’s started as a classification in America from research.

[Knina]

it diagnosed with the surgery. It depends how much organs are affected, how many lesions. But pain and other symptoms are not related to the stage. Sometime even with stage I one can experience sever symptoms. And some women with phase IV do not experience sever symptoms.Hope that helps.

[DAML8 in reply to Knina]

I’ve always been told that mine is severe and it has spread to multiple organs. I suffer with severe pain pretty much all day everyday. I have had multiple surgeries, a hysterectomy and my ovaries removed but still, it continues to spread and the pain is worse than ever.

[Knina in reply to DAML8]

So sorry to hear that. I hope you will be able to find a way to hold the spread. be strong!

[LA-B-19]

I was diagnosed a few months ago following a laparoscopy. It’s been described to me as ‘severe’ but I’ve never been told a stage either.

[DAML8 in reply to LA-B-19]

Yes, I’ve always been told mine is severe and has spread to multiple organs.

[claudia_d in reply to LA-B-19]

I was told 3-4. Laparoscopy revealed 4. Check the stages below

[claudia_d]

Funny enough I was just writing an article about that: endo-fighter.com/#/0

Hope this helps xx

1. Minimal - stage 1

Characterized by isolated implants and no significant adhesions.

2. Mild - stage 2

Characterized by superficial implants that measure less than 5 cm in diameter without significant adhesions.

3. Moderate - stage 3

Involves multiple deep implants, small cysts on one or both ovaries, and the presence of flimsy adhesions.

4. Severe - stage 4

Consists of multiple deep implants, large cysts on one or both ovaries, and thick adhesions.

[DAML8 in reply to claudia_d]

Yes, that does help. Thank you! Sounds like mine must be stage 4 then as I’ve always been told its severe and has spread to multiple organs. I did have large cysts on my ovaries too before my hysterectomy a few years ago.

[claudia_d in reply to DAML8]

Oh I'm so sorry to hear that...I was stage 4 as well. After laparoscopy I'm supposed to be stage 1. How are you after hysterectomy? I'm worried for my friend she might need to have one.

[DAML8 in reply to claudia_d]

I had a hysterectomy due to adenomyosis unfortunately it made no difference to my endo pain and I am currently suffering more than ever.

[claudia_d in reply to DAML8]

Omg...I am sending you all the remote hugs, honestly. I hope you'll feel better.

[Stacey85 in reply to claudia_d]

Hi,

Sorry I'm butting in here.

I had a lap a few weeks ago and I don't trust the general gyne at all.

I was told I had end on my bladder, ovary and a cyst in my cervix. They burned it off my ovary and left the end on my bladder.

They are refusing to send me to a specialist because my end is "not severe" enough, even though they won't touch it!!

Now the NICE guidelines say "Refer women to a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter."

I have no way of knowing if it's deep into my bladder as they haven't checked!

I'm due to have it out with them this week which is rather stressful so I'm trying to get as much information as possible together.

What stage do you think I am? and do you think I warrant a referral to a specialist? xx

[DAML8 in reply to Stacey85]

Don’t apologise, you’re not butting in at all.

Oh no, so sorry to hear that.

Do you have a Endometriosis centre near you? I went back to my gp and asked to be referred to a specialist as id had 5 unsuccessful operations under general gyne.

He has a lonnnng waiting list but i’m hoping its worth the wait!

Wish I could afford to go private! x

[Stacey85 in reply to DAML8]

I have one in Edinburgh. But my letter after my operation from the gyne says I don't warrant a referral to a specialist centre. So I really don't know what to do. I'm too bad for them to deal with but not bad enough for a specialist clinic!!! Wondering if I can cut the gyne out now. But I'm sure my GP said it has to be the gyne referring me : (

[claudia_d in reply to Stacey85]

Can you go private? Also, I used Babylon online gp & specialists to get referrals.

[Stacey85 in reply to claudia_d]

I can afford to go private for a consultation but I would need to know they could refer me back in the NHS. I can't afford to get MRI's etc done privately x

[claudia_d in reply to Stacey85]

I know the prices are....obscene.

An MRI is 1.2k.

Private surgery is around 5k.

I had to do mine in Timișoara, Romania and it was around 3k with Airbnb, blood tests, MRI interpretation and so on.

All of this because, 6 months passed since I was in ER on my knees with pain, at St Thomas and they still didn't put me on waiting list in NHS. Even if they said they will.

I am a pretty jolly, calm, person but I couldn't take it anymore...

[claudia_d in reply to Stacey85]

I'm just saying if shit goes too bad...know your options.

I always say "Hope for the best, prepare for the worst"

[claudia_d]

I am also in the process of creating this honest, open platform that gathers all the information that helped me in all these 15 years. All the apps I wish I knew about in the beginning, all the things I tried and an overall positive vibe. Even if I am still battling with this I feel I've tamed some aspects of it.

[DAML8 in reply to claudia_d]

That sounds like just what I need. Please let me know when you have this information! I have tried sooo many different things and none have worked for me either. I keep thinking..surely something will work someday! x

[claudia_d in reply to DAML8]

Well I can give you what I've built so far...just bear in mid is very beta, spelling mistakes may be present, articles unfinished etc. I could really use some feedback in the very early stages.

I will also make a list of potential functionality where women can vote what they want.

[Silverskylark]

I was diagnosed 18 yrs ago after I had a laparoscopy, but at that time wasn't told what stage. As Knina pointed out symptoms can vary from person to person. Mine was fairly silent but over the years I now know it was causing havoc. In more recent years my symptoms have been more problematic and I've been in pain constantly. After some initial treatment that didn't improve things I was given a MRI scan, it was after that they diagnosed severe stage IV.

[Afrohair]

Is it very important to you to know the stage?just that most people interested about stage are concerned about fertility ,know that regardless of stage pregnancy can be possible.most consultants in the U.K. don’t go by stage but a case by case basis as despite stage you could have little pain or a lot.the stage indication is usually used by Americans but in regards to a laparoscopy can be irrelevant you would be stage 3 if you have cysts but what if you only have one small cyst then you are verging the stage 2 category but would be still classed as 3 due to one small cyst.the staging category can just give you more stress about how severe your endo is

[Lily1986]

Hello.

I would say yours is stage 4, same as me.

And my symptoms are like yours I have had 4 ops and both tubes and left ovary removed but now in severe pain every single day.

Got mirena put in at last 6 hour excision operation but made little difference..

I was considering hysterectomy but consultant is concerned to do this as thinks it will infact increase my nerve and bladder pain and provides no guarantee that aggressive forms of endo won’t return.

What do you use for pain relief?

Do you manage to work? I’ve been signed off since December as sitting for so long became impossible and now residing myself to the fact I probably won’t be able to return.

Wishing you the best of luck with this horrible disease xxx

[DAML8 in reply to Lily1986]

Hi. It’s awful isn’t it! I had a hysterectomy when i was about 30, then they removed both my ovaries a year later. I am on the (very long) waiting list to see a pain specialist but atm i am just on oramorph 4 times a day (which doesn’t really touch the pain). I gave up my job a couple of months ago, i was constantly exhausted and couldn’t continue anymore so i made the decision to leave. Can’t really afford to but couldn’t physically do it anymore either. It’s so tough isn’t it. xx

[Busy-Lizzie]

The staging system is American and was devised as a means of categorising the effect on fertility.

The recognised Endo experts don't tend to use it at all because it doesn't serve any useful purpose in addressing symptoms such as pain.

[Lindle]

The mentions of stage being unimportant in the UK is absolutely incorrect. Staging is a measure of depth of infiltration and/or involvement of the rectovaginal area - the most common location of deep endo. Stages 1 and 2 should be treated in secondary care by someone with expertise in diagnosing endo (so ideally with sub-specialism in Reproductive Medicine) but stages 3 and 4 must be treated in tertiary care in Centres of Excellence by advanced excision surgeons. So the only way to know who should be treating a case is by staging the complexity. The NHS England specification for severe endo is clear on this.

1.1 National/local context and evidence base

Severe endometriosis for the purpose of this specification is defined as either deeply

infiltrating endometriosis or recto-vaginal endometriosis. Deeply infiltrating endometriosis

exists where the disease invades at least 5mm below the tissue surface and can occur in a

variety of sites, such as; bladder, pelvic sidewalls, ovaries, pelvic brim, bowel surface and

diaphragm. Recto-vaginal endometriosis is endometriosis which involves the recto-vaginal

septum area (recto-vaginal septum, vagina, utero-sacral ligaments, rectum). There are many

classification systems for endometriosis but none are universally accepted. The definition

used here would accord with grade 3 and 4 disease used in the revised American fertility

Score. (1). Whilst minor and moderate endometriosis can be managed in all gynaecology

departments, this service specification concerns only severe endometriosis, which has an

annual incidence of around 5,000 new cases in the UK per year.

[Adeno2020]

Hi,

Personally I think it’s better not knowing,

All these stages do is give us all more mental anxiety (so I’d say)

Imagine years of agonising pain to be told you have ‘stage1’ endo as compared to some who are stage 4 classed as ‘severe’ I think that’s mentally damaging. I feel like if that was me I’d be questioning myself and comparing myself to others who seem to have that higher number ?

When I have my lap I don’t want to know and will ask to only be confirmed of endo not no numbers. Each and everyone of our story’s are valuable wether you have mild or very severe we all face the same battles and I think this only makes us doubt us.

I hope your okay after your surgery now

[DAML8 in reply to Adeno2020]

Yes i totally agree now. What you say makes complete sense x

[Adeno2020]

Good, Take care x