New appointment! Here we go again!

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

16 Replies

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  • Hi - I think your gynae is probably thinking this is likely to be Lichen sclerosus, an autoimmune condition that would make sense with endo being suspected to be one.

    womhealth.org.au/conditions...

  • 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.

  • Hi - Dr Redwine has done the most wonderful work to progress the treatment of endometriosis as has Dr Jeremy Wright who brought his techniques to the UK. But he is a gynaecologist and his area of expertise is the treatment of endometriosis.

    I have had a look at the link you have given and in particular an article on the possible origins of endometriosis. In discounting Samsung's very outdated and now ruled out theory of retrograde menstruation as the original cause he addresses a possible alternative that has been put forward. Since most if not all women have endometrial tissue in their pelvis it is supposed by some that in healthy women there is a 'natural' auto-immunity whereby the immune system recognises that the endometrium cells are in the wrong place and disposes of them safely. There is a suggestion by some that in endometriosis this natural autoimmunity is switched off and the rogue endometrial cells develop into endometriosis. It is possible and likely that this will be involved in some way in endometriosis but there is no definitive documentation confirming it that I know of. In discussing these possible immune aspects of endometriosis Dr Redwine does make it clear that he is only guessing, and quite rightly as he is not an immunologist and is clearly recognising his limitations in this regard. It does seem that his article is there for historical interest and not to state anything definitive one way or another about these immune theories, since that is not his field of expertise.

    However it is the field of expertise of immunologists and endometriosis is now formally classed as an immune system disease with the status of a 'suspected' autoimmune disease. Obviously it cannot attain formal status until research has been put through whatever processes are involved in formally classifying it. But peer reviewed published papers in immunology journals by the only people qualified to know now clearly consider endometriosis as being an autoimmune disease in common with others autoimmune conditions in association with endocrine allergy in females.

    For any area of science to progress there are many theories put forward over many years, some of which turn out to be correct and some not. It is only by trial and error that we identify the truths and move forward. It is not a contest as to who is right and who is not - it is the participating and contributing that is important. Dr Redwine has acknowledged that he is not an immunologist and therefore would not expect to contribute greatly to the research into the causes of endometriosis that is being undertaken by immunologists. But as a gynaecologist his contribution to its treatment is priceless and he will go down in history as the most important pioneer in his field of expertise. For the part of immunologists their time will come to be placed in history for identifying the cause. which I believe to be on a close scientific horizon in view of the strides the immunologists are making.

    Obviously everyone is entitled to their opinion but it should be based on some sort of considered fact. Whether or not a person believes endometriosis to be autoimmune or not (despite the world's leading experts now believing so) is their choice but it is a fact that endo is a confirmed immune system disease and any immune system disease gives a person the highest risk of developing others, including any number of autoimmune diseases that are immune system diseases. To deny this would be the greatest folly as it would be to denounce science itself.

  • 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.

  • Hi - the papers I have access to I have to pay for and are part of ongoing research so I don't really want to get further involved in this 'argument' since it's not really helping women deal with their endometriosis. An awful lot of progress has been made in the 13 years since the paper you refer to was written. In the introduction it is stated that endometriosis is a disease in which endometrial tissue grows outside the uterus, which is no known not to be true.

    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 am unable to understand a concept that in endometriosis the body is acting normally to something that shouldn't be there, otherwise the body would dispense with it without doing us harm. And this goes no way to explaining why the endometriosis is there in the first place. This seems to imply a belief that endometriosis is endometrium that is in the wrong place. But endometriosis is quite a different tissue to endometrium with high levels of aromatase and oestrogen receptors to enable it to generate its own oestradiol to proliferate itself (not present in normal endometrium). There has to be a purpose for this sophisticated modification of tissue rather than being a random misplacement of a tissue not found in healthy women.

    Whether or not endometriosis has yet been 100% identified as autoimmune is largely irrelevant as it probably never can be. Much of scientific 'certainty' is based on a balance of probabilities and evidence now suggests that high probability. As we know nearly all autoimmune disease is found in females, it is thought to be closely connected with oestradiol and oestradiol drives endo. There is enough evidence for now to support the belief until such time as it is confirmed.

    This is a forum for endometriosis sufferers and all that matters is that they are recognised as having faulty immune systems and that people with faulty immune systems are a risk of autoimmune disease and all their conditions should be considered as part of the same flawed system.

  • "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.

  • But the study done 13 years ago doesn't really apply as it's not current. The current evidence would have to be allowed at least equal weight. Best to wait until it is confirmed then hopefully women will finally be listened to and have all their immune diseases considered concurrently.

  • I don't know whether I can send this by a pdf link but it's a pivotal 2012 article bringing together all immunological research confirming endo as an autoimmune disease as much as it can possibly be and confirming links with other autoimmune diseases. There is much discussion about it and It is hoped it will clear the way to treating endo at source by immunomodulators rather than hormone treatment:

    No that doesn't work but you can get it if you google:

    'Is there an association between autoimmunity and endometriosis?'

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

  • 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

  • Hi Jo

    I accessed a very important paper today written in 2012 that brings together all the evidence and draws on over 130 reference papers written by peers in the field of immunology and confirms endometriosis as an autoimmune disease as conclusively as is possible to do so and confirms the link with other autoimmune diseases. This has now opened the door to research into treatment with what are called immunomodulators to halt endo at source rather than by hit and miss hormone medications that have no long term effects. This therapy is what holistic measures are based on - addressing the immune system response rather than the symptoms. It will take a long time before such medicines are produced and tested in order to make them available but the future finally looks promising. x

  • 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

  • Hi Jo - it has actually been acknowledged for some time that endo is immune related so you have been right in your suspicions all along but this substantial evidence as to its autoimmunity makes so much sense of endo. For instance it has been found that there is an antibody to endometrial tissue which is thought to be implicated in infertility in endo. The endometrium actually rejecting an egg trying to implant. Wouldn't that make sense of your thoughts on it rejecting your husband's sperm?

    Unfortunately I'm sure it will be a long time before GPs and gynes accept it - not until new treatments are ready to be trialed. But it has to be a move in the right direction.

    Thoughts of Bath bring back memories. I was at college there and had many pub crawls that took in the Beehive and a jazz pub called The Bell - before endo and my intolerance to alcohol that is! I expect they are long gone. x

  • 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

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

    Making more sense now... I blame dad!

    Xx

  • Ha ha! there you go again!

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