No correlation between size and symptoms ...

[HevsLM]

Hi endosisters … I have my next follow up appointment next Thursday with the consultant; the last one I had was in January and I saw the consultant nurse rather than the consultant/surgeon who done my lap. (See previous post: healthunlocked.com/endometr...

As you can see from my previous post the lady told me I had minimal endo and IT COULD NOT POSSIBLY CAUSE ME SO MANY PROBLEMS since then I have had the Mirena coil fitted and still have mixed feelings about it I’m very much up and down and still struggling quite a bit. But I’m worried now that I will be seeing the original consultant next week that he too might have the attitude of ‘this isn’t big enough to cause your problems’ and I’m really scared that that will be the end of it and I’ll be discharged from the hospitals care when I don’t really feel as though anything has improved or changed. Are there any studies or sources of reliable information out there that I could show him that states that there is no correlation between the stage and the pain/symptoms? I feel so worried about going back to not having a label or explanation for my symptoms

[SassyMac]

Hi there! What a great attitude for them to have, eh? In all the material I have read online it usually states that the stage of your endo and the amount of pain you experience has no relation. For example someone with stage 1 endo could have just as much pain or more pain than someone with stage 4 endo! Are you seeing someone in general gyne or an endo specialist?

[HevsLM in reply to SassyMac]

I know not nice at all! The man i'm seeing next week and who done my lap is a specialist but the lady who gave me my results last time was a general gynae consultant nurse (and super horrible grr) i've been promised i'll see the main man himself next week! xx

[dabba76]

Hi

In 2011 I was diagnosed with minimal endo in 2015 after another lap it was widespread on everything including my kidney (not sure the stage). I was in so much more pain with the minimal endo. With the more extensive endo it was all the other symptoms that caused me the bother the pain was no where near as bad. So stage doesn't necessarily correlate to pain I think it depends where it is. x

[HevsLM in reply to dabba76]

Thank you lovely lady, sometimes reassurance is all we need! xx

[confusedandworried]

There are plenty of well documented articles to support the fact that the amount and stage of endo doesn't necessarily correlate with symptoms experienced:

"The severity of pain does not correlate well with severity of the condition and, therefore, severe disease may go undiagnosed" (Audebert et al., 1992; Murphy; Olive & Pritts, 2001; Schenken).

"Diagnosis of endometriosis is difficult to confirm due to the wide variety of appearances and symptoms, as well as the unreliable correlation between clinical presentation and surgical findings" (Wellbery, 1999).

"It’s important to remember that the stage of endometriosis is not reflective of degree of pain, risk of infertility or predictive of the patient’s ability to conceive after therapy (ASRM; Audebert et al., 1992). Women with minimal or mild endometriosis have been found to have high degrees of pain and infertility, while asymptomatic women have been diagnosed with Stage IV on laparoscopy for tubal ligation. The variability in clinical presentation and stage of disease likely reflects our lack of understanding of the pathophysiology of endometriosis. Until a better understanding of the pathophysiology is achieved, the classification system will not be improved" (ASRM; Wellbery).

"The amount of pain a woman feels correlates poorly with the extent or stage (1 through 4) of endometriosis, with some women having little or no pain despite having extensive endometriosis or endometriosis with scarring, while other women may have severe pain even though they have only a few small areas of endometriosis" (Stratton P & Berkley, KJ 2011).

If you need more just google as there is plenty of research easily available now days regarding this issue. It's appalling the so-called "specialists" are not aware of this. Is it a BSGE accredited endo centre you are under the care of or just a general gynaecologist?

Hope this helps.

Best wishes, Jo