Would you find this acceptable???

I just wanted to share (with their permission) this excellent post. It was written by a lady in the US, from what she discovered whilst trying to get good care for her daughter who has endometriosis.

Sadly all these same issues apply in this country and are happening all over the UK every day. Obgyns are what we would refer to as a "general gynae" here.

"Would you find this acceptable?

Child has multiple splinters in her finger and hand and the Doctor:

A) Looks at the finger and says “There’s a splinter in there”, but does nothing to remove it.

B) Amputates the entire finger (but ignores the splinters in the hand.)

C) Prescribes medication that will shrink the splinter, but the side effects are far worse and permanently disabling.

D) Burns off the tip of the splinter on the finger (leaving the bulk of the splinter), and declares that it is all better.

E) Actually removes the splinters from the finger & the hand.

Believe it or not, the above A-D are accepted ways to treat endometriosis. Obviously they do not work, yet doctors throughout the United Stated have been trained to do A-D, and then they are mystified when their patients continue to suffer.

Why should you continue to read this? Whether you realize it or not, someone you know is suffering with this disease and if you take the time to read this, you will understand a bit about how to help them.

A) "Looks at the finger and says “There’s a splinter in there”, but does nothing to remove it."

This is what happens when you have endometriosis and you go to your trusted OBGYN and they do a Laparoscopic procedure to “see” if you have the endo, but they aren't qualified to remove it, so they just go in and say “Yes, you have endometriosis” or worse, their training is so limited, that they actually miss the endometriosis and say “There isn’t anything in there, I don’t know what is causing your pain, it must be in your head you need to see a to see a shrink.” Note: This is not the Doctor’s fault, this requires specialized training.

B) "Amputates the entire finger (but ignores the splinters in the hand.)"

There is a huge misconception that hysterectomy will cure endometriosis and this is actually taught in medical school because the first patient ever diagnosed with endometriosis was cured that way. Recently we have learned that endometriosis can exist anywhere in the body, therefore a hysterectomy only “cures” endo for a select few women, but it is the equivalent of cutting off the finger to remove a splinter.

C) "Prescribes medication that will shrink the splinter, but the side effects are far worse and permanently disabling. It’s very common to prescribe a type of pill that forces a young girl into menopause in order to stop the periods from coming and shrink the endo."

For most women the side effects of being on this type of medicine is horrific and permanent. Often there is no relief from the endo, so they end up worse than before. (Note the permanent side effects) There are a few women who have benefited from this temporarily, but the odds are against you.

D) "Burns off the tip of the splinter on the finger (leaving the bulk of the splinter), and declares that it is all better."

This is what is called ablation and is one of the most recommended "cures." The surgeon goes in and burns off the part of the endo that he can see. It can sometimes offer relief for a very short period of time until the endo flames up again. Once you have this procedure, it makes it harder for a qualified doctor to locate and excise (cut out) the endometriosis, because the body heals over the endo.

E) "Actually removes the splinters from the finger & the hand."

This is what happens when you go to a Doctor who specializes in endometriosis excision. The endometriosis is actually cut out of the body. This is called excision. This is the ONLY way to cure endometriosis.

Thank you for reading this, and the next time someone you know mentions "killer cramps", or cyclical pain, consider getting out of your comfort zone and try and help them. BTW, there are actually a few documented cases of endo in males as well, but that is extremely rare."

By Phyllis Orlowski-Johnson

September 18, 2015

Posted in Nancy’s Nook Endometriosis Education and Discussion Group

Please remember all this and make sure (if at all possible) that if you are going to have surgery, it should only be done with someone who is a true specialist in endometriosis, and that they will be excising the endo rather than burning it. Burning is known as ablation, diathermy, cauterisation and coagulation.

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  • Great post, thank you. Will share with my sister in Australia who has been going on at me to change specialists as she had amazing specialist care in Oz and was treated using excision xx

  • Great! :-) It's fine to share publicly too she has given permission for that, as long as you credit her as the author and the group too.

  • Brilliantly written and very helpfull! Thank you for sharing!

  • That's an interesting view.

    However (I should add, I'm in the UK, not the US) I never got offered the option to have the cells excised for my last lap, I'm due one again soon, so I will definitely suggest this, but my thoughts are that, as consultants aren't 100% comfortable with the condition, they won't be comfortable performing the excisions. Or if so, there are only few willing to do so.

    Also, I would question if it's ever possible to remove all of the endo cells at all, let alone without damaging any surrounding tissue?

    Just thoughts... But I do like this perspective!

  • When I asked my last consultant that was his exact point he made. With complete anger with me for actually asking why it cannot be cut out

  • Hi, you will be really pleased to know this is the factual perspective on endo based on Dr David Redwine's pioneering work, that we so often don't see or hear about as there are so many myths surrounding the disease, and all of the really good endo specialists in the UK are in agreement with this method of treatment.

    A really skilled surgeon can safely excise endo from almost anywhere, and will work with a team of other surgeons such as a colorectal surgeon and urologist if needed to do this. Excision is less damaging to the surrounding area than burning is too. This is a really good article explaining about wide excision vitalhealth.com/endometrios... watch the surgery video too - if you are not squeamish! ;-)

    Many of the things consultants say to women about surgery being dangerous / high risk etc are often down to lack of skill on their part! But they never tell us that - do they?? If a surgeon is very reluctant to perform surgery and / or excise than can be telling - and is often due to lack of skill too.

    We have the BSGE endo centres in the UK and all the surgeons at them "should" be performing excision. Depending on where you are the referral rules are different in various regions, but in England it is very straightforward and you are entitled to be referred to any specialist in England on the NHS. bsge.org.uk/ec-BSGE-accredi... Unfortunately some of those specialists are a lot more skilled than others, so do your research before you decide on where to be referred, and ask them lots of questions and make sure they will be excising not burning.

    Appallingly the care so many women here are getting is way below par, so as things stand the only thing you can do is learn more of the facts on endo yourself, and take charge of your own care, and make sure you are being seen by one of the best specialists.

    These are all great factual, up to date resources on endo:

    vitalhealth.com/endometrios... - lots of great articles on here.

    This one is a good start: vitalhealth.com/endometrios...

    endopaedia.info/

    This new book is amazing and really easy to understand, it's perfect as it contains everything you need to know all in one place. It's not available in the UK yet, but you can order it from here with free delivery:

    bookdepository.com/Endo-Pat...

    facebook.com/groups/endomet... EndoMetropolis is a great education / discussion group with leading experts in the field involved, you can openly ask for feedback on centres and surgeons there too as it's not allowed on here.

    Good Luck! :-)

  • Love it!! Very well put.

  • this is brilliant, thanks for sharing it :)

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