New appointment! Here we go again! - Endometriosis UK

Endometriosis UK
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New appointment! Here we go again!

joanna1976
joanna1976
16 Replies

Hi all,

I had another appointment through today for 20/04/15 at Ruh bath. (I've been under the care of the Ruh for 10 years).

This time the appointment is to see a dermatologist, for my vulva as it is white, my gyne discovered this at my last check up. He seems to think it is auto immune linked. But after being a Google doctor (I know! I know!) im getting a bit worried it could be worse like the dreaded c word.

There is no lumps & bumps there that I have come across, but itch! Omg! Driving me insane.

It's not thrush that's been ruled out.

Has anyone had anything similar or have any advice. I can't think of anything else at the moment.

Could it possibly be endo linked?

Thanks

Jo xx

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janeingirona
janeingirona
in reply to Hidden

Hi Lindle. Although many women with endo also have auto-immune conditions, endo has so far not been identified as one. See Dr David Redwine's page (Endopaedia) and discussions on endometropolis.

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MariBiscuits
MariBiscuits
in reply to Hidden

Do you have a reference to an article, case study or any information about the formal classification as a suspected auto immune disease? I'd definitely be interested in reading that. Not saying it isn't an interesting area that definitely needs to be investigated, but based on the studies I have seen so far it hasn't been proven. Not that it isn't possible, but we just don't know one way or another yet, as there isn't enough evidence.

There were a few good discussions about this topic on another group recently (I won't mention the name in case it isn't allowed), and David Redwine shared his views then. I believe he felt that the main study about endometrioisis and auto-immune diseases (which is what most people reference when discussing this topic) was actually somewhat flawed (as both the endometriosis and the other diseases were self reported), and once you studied the individual figures the increase wasn't as significant as it seemed. There are limitations with that sort of study (as it says in the discussion area of the report) due to selection bias amongst other things, so while it is definitely interesting, I don't believe we have enough information yet to be sure.

humrep.oxfordjournals.org/c...

While David Redwine might not be an immunologist, he definitely has a very good understanding of endometriosis treatment and research, and continues to be involved/interested since retirement, so I don't think his opinion can be totally discounted. His own comments regarding the bodies immune response when you have endometriosis are definitely interesting, but his feeling seems to be that rather than being an autoimmune response, our bodies are reacting normally to something that shouldn't be there (e.g. the endometriosis) and therefore excision is the ideal solution. Of course this is just my understanding of what I have seen him post, so I'm not directly quoting, but that's the general impression I get.

Of course I agree that it is an interesting field of research, and in science it's essential that new theories are put forward all the time, and when proven we adjust our views/theories to take that into account, but I also think it's entirely reasonable to state that auto-immune has not yet been identified as an autoimmune condition. So while it's an interesting topic for discussion, we can't be 100% till more evidence comes in, which will hopefully be soon.

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MariBiscuits
MariBiscuits
in reply to Hidden

"I would be very concerned about a claim that immunological research is flawed because the diseases are self-reported. Immunologists base their evidence on quantitative findings such as, but not limited to, elevated immunoglobulin G (IgG) autoantibodies and IgM autoantibodies and abnormal polyclonal B cell activation found in endometriosis, classic characteristics of autoimmune disease. Patients can't self-report such responses!"

I was actually talking about the specific study which I linked to and was discussing at the time (the link is at the end of that paragraph), sorry if that wasn't clear. It says on the study that in that case that both the endometriosis and auto immune conditions were self reported. I'm definitely not saying this is the case in all instances, just that to my knowledge this is the largest study on this topic and is unfortunately not conclusive for those reasons.

I'm also not trying to get into a huge argument about it. As I said I think it's an interesting area of research, but I also think janeingirona pointing out that it isn't proven yet is a valid point (as you said yourself it's suspected and not yet proven), and it's an interesting topic, so I like discussing/learning more about it.

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Miracle77

Don't see it being endo related. look up lichens sclerosis as that's sound more like it

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joanna1976

Hi All,

Thankyou for all your comments, I didn't think I was going to start such a debate.

I'm no doctor or medical trained but from personal experience endo being auto immune linked would answer a lot of questions for me, so I firmly sit on the believers fence and follow lindle.

Jo :) x

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joanna1976
joanna1976
in reply to Hidden

Hi lindle,

This is such good news! Finally some answers.

Now let's hope this info filters down to doctors and gynes and medical persons.

😃😃 that news has made me very happy, I've had a gut feeling for a while endo could be immune related.

For me anyway. Fantastic news.

I'll private email you tomorrow reference the message you recently sent. I've not forgotten just been working flat out so havent had the time.

Jo :) xx

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joanna1976

Aw! You lived in bath? What a small world! I worked in bath for years, but live in Frome.

I think the beehive is still there but not so sure on the bell. I spent my time in joe bananas! Back in the day! (20 or so yrs ago!)

I don't drink anymore either,

I've turned into a boring old fart lol!

I'm just happy that everything makes sense in my head now.

Now all I have to do now is figure out why I ended up with the faulty gene and my siblings didn't!

Xxx

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joanna1976

Ooooooo just seen that giant cell arthritis is an auto immune disorder & dad has that!! Mmmmmmm

Making more sense now... I blame dad!

Xx

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