Superficial stage 3 endo

Please share your knowledge about this kind of endo. I'm in such pain obviously, have the coil too. Have not had the lap yet (doc thought he could treat pain with cool). Have had lots of Mirena side effects but that's another discussion. How can something that's called superficial cause so much pain?? I think the medical term for this is misleading. Keen to hear all your thoughts!

9 Replies

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  • Coil * not cool

  • There is no such thing as superficial stage 3. There are 4 stages - minimal (1), mild (2), moderate (3) and severe (4). Stages 3 and 4 must only be dealt with in a BSGE accredited endo centre. Take this contract to your GP for referral:

    england.nhs.uk/commissionin...

  • Hmmm. Wonder why doc said superficial then. And wonder why he didn't operate. In fact I had lost faith in him and have asked GP for referral to second opinion. He changed his mind on op 5 minutes before I was due to have surgery in favor or Mirena which I didn't want. Saying that most people with superficial endo (with chocolate adhesions) like I have don't often see improvement from op. Hoping to know what exactly it all means through all of your experiences.

  • He may mean 'extensive' which could refer to minimal endo - i.e. a lot of shallow lesions. But his use of 'superficial' alongside stage 3 indicates a lack of knowledge. You are probably just as well not to have had him operate. Again there is no such thing as chocolate adhesions. 'Chocolate cysts' represent ovarian endo which will usually be an indicator of more deep disease elsewhere that is often missed in general gynaecology. You need to choose your second opinion well. Will pm you.

  • Hi Lindle

    Very interested in your reply here as I have just had a complete hysterectomy including uterus, cervix, tubes, ovaries, and separation and repair of recto vaginal, bladder and lower bowel due to adhesions and lesions. I've demanded a speedy follow up with my consultant to get detailed explanation and notes on any remaining condition as I will probably be thrown into medical menopause.

    I suspected endometriosis for a few years but couldn't persuade my GP that I had anything worth complaining about as the pain I complained of was of varying degrees and in multiple locations, different times of day, position and time of the month - all of which I now know are key indicators of endometriosis. She reluctantly referred me to our local hospital for hysterectomy for heavy bleeding and bowel pain during mensturation.

    My endometriosis was confirmed and dealt with as above by the consultant at my local hospital. The discharge notes explain all procedures in detail but just say endometriosis. Should I be asking for a grading and referral to a BSGE if above a 3? I found this post looking at other sufferers in my area and wonder whether Blackpenguin and I suffer from the same lack of local knowledge at primary care level?

    Thank you for reading.

  • I'm afraid this is quite typical of a lack of awareness in both primary and secondary care generally. Above stage 2 (so stage 3 upwards must be dealt with in a BSGE accredited centre).

  • Gosh!! They took everything out?? Sounds like they took the easy road. I'm so sorry :/ I also have pain randomly in different places at different times. I asked my GP to be referred to a specialist for a second opinion and a letter came through yesterday referring me to a local consultant in a medical practice!! I don't want another consultant I want a specialist. I'm fast coming to the conclusion that no doctor knows anything or wants to commit their careers to finding a better treatment. I'm wondering if we're looking in the wrong place with docs. Maybe we should be looking at Chinese medicine or something. Doesn't help you now. This whole disease is a total stuff up. I feel your pain. Literally.

  • Hi Blackpenguin

    Thank you for your reply. I was not far off menopause at 47, so that may have been part of the decision.

    We've demanded an early review with the consultant or one of his team (this coming Monday) as I have been left in limbo with a GP who won't touch me and a third hand explanation of my procedure just before hospital discharge by a registrar who wasn't even in the operating theatre.

    Hopefully I can get some idea if the extent of my endometriosis and demand a referral to specialist. I'll ask him do grade my condition and see if it holds up to the descriptions of stages I read last night. The explanation I've had so far of my adhesions and separation/repairs and decision to remove all repro organs sounds like I'm around stage 3 in which case I need to follow up the credibility of the op I've just had. We are demanding an MRI or some sort of follow up scan as I have severe pain in my right hand side and chest pain when lying down, bed to know if there's any remaining condition. I am giving up at on sleep at 4am each night/day.

    I wonder if we have the same GP surgery in the centre of town and not far from the hospital itself?

    I did pay to visit a private GP (opposite the hospital) in January when my own GP made it clear she thought I was wasting her budget and time with my many complaints. The private GP was marvellous and immediately suggested endometriosis as a possible cause and very surprise it hadn't been flagged years ago. If I don't get anywhere on Monday then I'll go back to her for a consultation and referral to a specialist. They also offer private scans.

    I hope you get the answers you need. I'll let you know any answers I get that might help.

  • Not sure what was meant .. maybe ask for clarity! Hes right that surgery doesnt necessarily work .. I had the whole shebang and no better .. Stage 4, extensive and infiltrating disease. But funny enough i read somewhere that theres actually 2 types of endometriosis. No idea how true it is but it stated stage 1-3 was one type of disease and stage 4 was another, more agressive form of the disease. That is why someone could have stage 1 and stage 1 for life, or go back into remission .. whereas stage 4 will always be stage 4. Dont quote me on this, its just something i read. But you certainly could have stage 3 superficial. Stages arnt on the amount of disease you have .. You could have a couple of endo patches and be diagnosed with stage 4, or loads of patches and be diagnosed with stage 1!

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