Stages of endometriosis

[Anastasia17]

How are the various stages of endometriosis defined? I.e level 1,2,3,4.

Is it also correct that if it's at level 3, the NHS protocol is to refer the patient to an Endo specialised clinic?

Thank you.

[Christin_a]

The stages are basically an indication of how much there is so stage 1 is a couple of small patches and stage 4 is it covers alot of areas.

Yes from my understanding stage 3 and 4 should be treated in a BSGE centre. However I know in Scotland this is harder than in England. I know in England either yout gynecologist or gp can refer you to the bsge centres, but a heads up that they normally have a long waiting list

[Anastasia17 in reply to Christin_a]

Thank you.

[BrightLights88 in reply to Anastasia17]

you can go in the bsge site find a few nearer to you and go to your gp to check which has the earliest referral appointment. I did that and within 3 months i am now had my MRI, seen consultant and had my pre OP now going for surgery in August. Where when I was in hospital with gynaecology specialist I been waiting since December to get surgery.

[Anastasia17 in reply to BrightLights88]

Thank you Brighlights88 for your reply. I have asked for referrals and Im on waiting list, even that was a fight with the GPs! But inconvenient people like us are used to fight! It must be inherent to the condition

[BrightLights88 in reply to Anastasia17]

I have had 9 hospital admissions due to my flare up every 3months since September. After that last one where I sadly was overdosed by the nurse and had a cardiac arrest I made sure when I got out if hospital I will refer myself to a endo specialist as i originally was not in one. I never knew about bsge centres till I signed up to this forum🙏

I went to the gp and the first doctor said there wasnt anything available. The next day I booked another app with a different doctor and he found me a appointment straight away. I have suffered a lot since september and mentally I couldn't go through another year like this, hence why I asked the gp to find anything closer to me. I gave him 3 different hospitals and the luckily the closest to my house had an appointment. Try and pop by again and see a different doctor, take a few endo centre options with you and ask them to check on the referral which one has a consultation appointment. Waiting list can be 6months or even more. Good Luck and I hope you can find a appointment quickly. x

[Anastasia17 in reply to BrightLights88]

It's shocking that you went into cardiac arrest. This must have been scary for yourself and your family!

GPs are awful. When I asked for a referral for a 2nd opinion as, since my lap last September, I haven't been told the level and /or where the endometriosis is located, I requested a specific hospital, but I was told that it wasn't possible as this hospital wasn't on their list. So I accepted a referral to a hospital on their list. I have since learnt via this very helpful site that what the GP surgery told me was complete crap. The GPs are constantly blocking me and I have to fight to get things done. I don't trust them.

For pain mangement, I was advised by a lady GP last week to watch a video from Dr Brain about understanding pain in 10 mns. Its about chronic pain, ie your brain becomes programmed to send pain messages, even when your body isn't in pain. Which I duly did. At thend it advises to have activities so as not to think about this chronic pain. The only problem in all of this is that: 1. I work full time and Im busy. 2. I have kids so Im busy. 3. I walk at lunchtime.4. I attend yoga/pilate classes once a week ( unless I feel too tired after work or that my tummy hurts). In other words, I do not stay sitting down wondering whether I am in pain or not and whether its at the end of my foot or on top of my head!

I am genuinely very grateful for this site and also to Dr internet when no one else can explain what this condition is about ,help, advise, when the telephones remain unanswered, the voice mails messages are never returned, the letters are never replied . I have learnt a lot on my own over the past few months, I now understand the various pains that I could not understand before, i also now understand why my body reacted /still reacts to some type of foods. I have now jumped on the Keto diet and it helps. It is a shame that Ive done all this on my own. It makes me realise that after so many years of no help from GPs and the past few difficult, painful and confusing months where I have descended into depression caused by the pain after the lap. A GP and a nurse both told me in February that with endo, nothing can be done. £60k to £80 k paycheque to tell patients that nothing can be done, i.e to condemn them.

It makes me realise that it's quite possible that I don't need GPs. I seem to know much more about my various conditions. Sorry for my rant. I should not think this way, but after all, who wouldn't after so much?

Yes, women in this community are, indeed, very strong women over a very long period of time.

Good luck to you all, you deserve every help that you need.

[BrightLights88 in reply to Anastasia17]

Yes I totally. And it was very scary. Till now it gets me very emotional what I went through in april. It will be 1 yr since I was diagnosed with endometriosis and I am still waiting for surgery. Right now since april I havent had no pain or symptoms. But I know deep inside there is a cyst behind my uterus and 2 big ones in my ovary growing. But for now I am patiently waiting for the surgery date which I will get within a few weeks now as I am seeing the surgeon tomorrow to talk about my MRI results.

I totally agree, we have to be our own doctor and research because Gps are mo good. I stopped going to my gp for any endo related issues. I only went to them in may to refer me and I saw a new doctor who had only been working for 2 weeks to address how my condition should have never been left till this long for actions and so he made sure he tried to find me a referral as soon as.

Thank you, I wish you all the luck too. x

[Anastasia17 in reply to Christin_a]

Thank you for your kind reply.