PLEASE SIGN MY PETITION TO ASK FOR BETTER AND FASTER ENDOMETRIOSIS DIAGNOSIS AND TREATMENT.

[Scooteeder]

I have just started a new petition to ask the Government (Department of Health) along with NICE, to consider the serious need for improvements to the diagnosis and treatment of Endometriosis. The petition can be accesses via the following link if you wish to sign it:

thepetitionsite.com/en-gb/8....

Please DO SIGN IT, if you think that it may help.

At present, far too many women are left waiting much too long to receive an accurate diagnosis of Endometriosis, despite sometimes having pretty obvious symptoms. A 2015 Endometriosis UK survey showed it still takes over 5 years to get a diagnosis - let alone treatment. This is just TOO LONG!

Diagnosis and appropriate treatment is often delayed by the fact that far too many General Practitioners have little to no knowledge and understanding of Endometriosis, although they often continue treating patients long after they are way out of their depth. As a result, many women who actually have Endometriosis, are given incorrect diagnoses by Doctors, based on the fact that Endometriosis symptoms can be similar to those of other, more common illnesses like IBS, stomach upsets, appendicitis... Added to this, prejudice, sexism, and ignorance of Endometriosis can lead some Doctors to make insulting suggestions to women, telling them that their symptoms are "all in their head", "nothing more than stress", "just period pain, for which you have a low tolerance", "malingering and hypochondria", or even "mental instability"! This seems worryingly similar to prejudicial Victorian attitudes to women that believed they suffered "Hysteria"!

Even when women are referred by General Practitioners to Gynaecologists, many Gynaecologists lack the specialist knowledge required to appropriately diagnose and treat Endometriosis. Instead, women are frequently fobbed-off with inappropriate stop-gaps, BEFORE diagnosis has even been confirmed. Many of these fob-off treatments have side-effects that women do not enjoy or appreciate. Some can even pose SEVERE RISKS when used to treat women who may have as yet undiagnosed Endometriosis. However, Doctors prescribe them frequently, sometimes with little or no reference to the full risks and side-effects involved. Such fob-offs, and the hidden dangers of their use in women who may have undiagnosed Endometriosis, include:

1. The Contraceptive Pill - there are many types of Pill, but all come with unwanted side-effects. Obviously, contraceptive Pills are not appropriate for use in women who wish to become pregnant, but many women who may have Endometriosis and are worried about lack of fertility are fobbed-off with the Pill. The Pill does NOT treat Endometriosis, it merely masks symptoms. Meanwhile, the Endometriosis, which is a progressive disease, may continue silently to grow. Women taking the Pill may suffer bloating, water-retention, mood swings, acne and spots... For a detailed list of risks and side-effects see medicalnewstoday.com/articl...

2. The Mirena Coil - yet another contraceptive device, with similar side-effects to the Pill. yet again, USELESS if you wish to consider starting a family! However, this device also has a hidden risk that is rarely discussed with women. It can sometimes be VERY painful to insert. It can also sometimes SLIP out of place, and there is then a risk of perforating the uterus, which is VERY SERIOUS and can only be corrected by surgery... For a resume of risks and side-effects see mirena-us.com/safety-consid...

3. Tranexemic Acid - this is frequently used to try to stop heavy bleeding during periods, which can be a symptom of undiagnosed Endometriosis. However, there are recommendations that this drug SHOULD NOT be used in certain cases, which may have relevance to women with undiagnosed Endometriosis. It is NOT to be used in women who have IRREGULAR PERIODS for which the cause is unknown (this could include women with undiagnosed Endo). It is also NOT to be used in women with potential risk of blood clotting disorders (Endo can cause heavy blood clots during periods, so surely this should be checked out BEFORE Tranexemic Acid is prescribed). This medication can also interact badly with Hormonal Therapies that contain Oestrogen, including the Pill (so women who are on the Pill should NOT take this as well). For a detailed breakdown of risks and side-effects see drugs.webmd.boots.com/drugs/drug-472-Tranexemic+Acid.aspx

4. Non Steroidal Anti Inflammatories (NSAIDs) - these are painkillers that include Ibuprofen, Diclofenac and Mefenamic Acid. Yet again, they do NOT treat Endo, they merely mask pain. Once again, there may be unwanted side-effects - in this case, risk of damage to the lining of the stomach and gut if use is protracted. As a rule, it is recommended that NDAIDs only be used short-term, to reduce their risks. There are cases in which they ought NOT to be used at all. These MAY apply to women with undiagnosed Endometrisis - they include cases where the function of the kidneys may be impaired (Endo on/near the Ureters may impair kidney function), or cases where the function of the bowel may be impaired (Endo can impair bowel function). Furthermore, NSAIDs are supposed to be used only with great caution in women who may with to become pregnant, because they can IMPAIR FEMALE FERTILITY. It is odd that this point is not mentioned to women who may have Endo, as one of their concerns is often impairment of fertility! For more information about risks and side-effects see cks.nice.org.uk/nsaids-prescribing-issues#!scenario or drugs.com/cdi/mefenamic-aci...

Given the problems that may be associated with the above treatments, I find it worrisome that they are often prescribed to women BEFORE their possible symptoms of Endometriosis have even been fully investigated, and BEFORE they have a confirmed diagnosis. Not only does this fobbing-off with the above treatments delay diagnosis, but it also exposes women to the risk of side-effects or other unwanted complications from these treatments, which may be unnecessary given that these treatments are simply masking symptoms and DO NOT represent a pro-active attempt to accurately diagnose and treat Endometriosis.

I should like, instead, to see women offered quick and effective diagnosis and treatment - plus no obstacles to referral to BSGE specialist centres. Furthermore, I should like to see appropriate questions, and dialogue, be raised concerning the use of the above, potentially inappropriate, treatments for women who may have Endometriosis that is not yet diagnosed. The FIRST line of attack when a woman is suspected of having Endo should be a diagnostic lap - this is the DEFINITIVE way of making a correct diagnosis.

If you agree, and think this petition may help, then PLEASE SIGN IT. Thanking you in advance, E. x

P.S. If you have any questions, feel free to comment.

[JeanOsborne]

Signed

[Scooteeder in reply to JeanOsborne]

Thank you very much for your help, Jean.

[Katharineh]

Signed.

[Scooteeder in reply to Katharineh]

Thank you, too, Katharineh.

[KSvedenmacher]

Well done on the petition and well articulated! I agree so much with your argument, it is so frustrating that in this day and age women still get robbed off instead of treated properly.

[Scooteeder in reply to KSvedenmacher]

Again, thank you. I'm sincerely hoping that the petition will effectively communicate the message that women should no longer have to put up with delays in diagnosis, or inappropriate and ineffective treatment. Endo is something to be taken seriously - plus diagnosed and treated accordingly.

[24endo]

Signed aswell xx

[Scooteeder in reply to 24endo]

"24endo" - a heartfelt personal thanks to you too. I'm trying to make it my policy to respond personally to everyone who comments here. This petition is very important to me - timely and appropriate diagnosis and treatment of Endo should be the only standard of care that women receive.

[24endo]

I wrote a post a little while bck saying this needed going just don't have the strength to myself so thank you for doing it for us all xx

[Scooteeder in reply to 24endo]

Not a problem - I just hope that the petition has some sort of a positive effect, and leads to better, faster diagnosis and treatment. So, the more signatures it gets, the better. If anyone has family and friends who they think might like to sign it, please feel free to ask them to.

Thanks again

[attummi1973]

signed it too ,thank you for such a well written petition, ive sent the link to family to sign too!

[Scooteeder in reply to attummi1973]

Thanks ever so much for signing "attummi1973", and thanks too for asking family to sign. The more signatures, the better. I just hope that it gets enough to help make a difference in respect of diagnosis and treatment of Endo.

I'm trying hard to stick to my agreement that I would thank anyone who commented in person. Sorry if it takes me a while to do - working and social life commitments mean I cannot always respond instantly. However, I'll do so as soon as I can get round to it!

Once more - thanks.