Please Make Vital Changes To Treatment Of Endometriosis - Urgently.

Around 1.5 million women in the UK live with Endometriosis (statistics courtesy of Endometriosis UK Charity). I am one of them! It took me over NINE YEARS of to-ing and fro-ing%2C misdiagnosis%2C unnecessary and unwanted tests and treatment%2C dismissive and insensitive comments... PLUS pain and other escalating%2C and unpleasant%2C symptoms BEFORE I even received an accurate diagnosis. This I have in common with many women who experience Endometriosis. At present%2C it still takes more than FIVE YEARS for a woman to receive the correct diagnosis of Endometriosis (stats. from Endometriosis UK 2015 survey). WHY%3F

Endometriosis is NOT a pleasant%2C NOR a trivial%2C disease. It is progressive in nature%2C and if left untreated - or if incorrectly treated - can do significant damage. Symptoms associated with Endometriosis can include severe pain%2C heavy and irregular periods%2C fatigue%2C bowel problems%2C bladder problems%2C bloating... at worst%2C even infertility. The longer the disease is permitted to progress%2C the worse the likely prognosis. Endometriosis is "graded" stages 1 to 4%2C with 1 being the least severe%3B 4 is the most severe%2C and covers extensive growths of Endometriosis which have often penetrated deep into the tissues and organs of the body that they afflict. Deep Infiltrating Endometriosis (which grows as nodules 5mm or more deep within the body's tissues) automatically classes as stage 4%2C and this type of Endometriosis can do significant damage%2C because it is particularly difficult to remove. Where Endometriosis is severe%2C or difficult to access%2C it can take a highly skilled%2C and dedicated%2C surgical team to remove it. This can only be done at a BSGE approved Endometriosis Specialist Centre. Centres such as these were established explicitly to deal with the problem of Endometriosis.

Given that MY Endometriosis took over 9 years to diagnose%2C by the time it was discovered%2C I had stage 4 Endometriosis%2C with Deep Infiltrating Endometriosis of the Utero-Sacral Ligaments. I also had severe lower back and pelvic pain%2C related bowel problems%2C heavy and irregular periods%2C anaemia%2C fatigue... I ended up requiring FOUR surgeries to treat my Endometriosis. The delay in accurately diagnosing and treating me cost me time off work%2C negatively impacted my social life%2C affected my fertility%2C and strained family and friend relationships. WHY%3F

It is my belief that Endometriosis is NOT appropriately handled by the UK medical professions. All too often%2C General Practitioners know far too little about the illness%2C resulting in delayed diagnosis and treatment for Endometriosis patients. Endometriosis is too frequently confused by GPs for other%2C more common%2C disorders due to a similarity of some symptoms - examples include "period pain"%2C Irritable Bowel%2C Appendicitis%2C "upset stomach". Furthermore%2C many GPs appear to dismiss symptoms of Endometriosis in women as being "all in the head"%2C "nothing but stress"%2C "malingering"%2C "hypochondria" or "mental illness". This reminds me scarily of prejudicial Victorian beliefs in "Hysteria"! Even when referral is made to a Gynaecologist%2C too few are qualified and knowledgeable enough to appropriately diagnose and treat Endometriosis. Instead%2C many women (including myself) are fobbed-of for years with the following unsuitable treatments%3A
1. The Contraceptive Pill - this does NOT cure Endometriosis%2C it merely masks symptoms. Meanwhile%2C the Endometriosis may still silently be growing. Plus%2C a woman on the Pill must endure all the side-effects of the Pill%2C such as water-retention%2C bloating%2C mood swings%2C acne... See www.medicalnewstoday.com%2Farticles.290196.php for a full list of side-effects.
2. The Mirena Coil - another hormonal device that does little more than mask symptoms of Endometriosis%2C and which comes with side-effects not unlike the Pill. Additionally%2C this device can be painful to fit%2C and there is a risk of slippage which may lead to perforation of the uterus ( a risk women are rarely told of). See www.mirena-us.com%2Fsafety-considerations for a full list of side-effects and risks.
3. Tranexemic Acid - ostensibly to prevent heavy periods. However%2C this medication can be risky if used in women who hope to become pregnant (one of the mains concerns of women with Endometriosis is fertility). It is also NOT to be used in women with unexplained irregular periods (which can be a symptom of Endometriosis). For a full critique of risks and side-effects see drugs.webmd.boots.com%2Fdrugs%2Fdrug-472-Tranexemic%2BAcid.aspx
4. Non-Steroidal Anti Inflammatories (NSAIDs) - including Mefenamic Acid%2C Ibuprofen%2C Diclofenac... these drugs can pose risks for use in women with Endometriosis that are rarely considered. They include the fact that such drugs can impair fertility ( a concern for women whose fertility may already be at risk due to Endometriosis). Also%2C they can cause problems when used in people who have stomach or bowel inflammation (which can be a symptom of Endometriosis)%2C or kidney problems (which can result if Endometriosis grows on%2Fnear the ureters). For a full insight into risks and side-effects see cks.nice.org.uk%2Fnsaids-prescribing-issues%23!scenario and https%3A%2F%2Fwww.drugs.com%2Fcdi%2Fmefenamic-acid.html

Many of the above treatments are given to women BEFORE they have even been accurately diagnosed with Endometriosis. This is NOT appropriate. Firstly%2C because it delays the diagnosis of Endometriosis. Secondly%2C because the risks and contra-indications of many of these treatments may actually rule out%2C or call into question%2C their use in cases where Endometriosis may be suspected. Yet women are not warned of this fact. I therefore call upon the Department of Health%2C and NICE%2C to commence an important review of Endometriosis diagnosis and treatment%2C with a view to eradicating the current common practice of delaying accurate diagnosis by fobbing women off with the above treatments. Definitive diagnosis of Endometriosis can only be done via surgical Laparoscopy. THIS should be the "gold standard" of treatment. I therefore request that new guidelines for diagnosis and treatment of Endometriosis be implemented%2C in which any woman suspected of having Endometriosis be considered for Laparoscopic surgery as a FIRST line of diagnosis and treatment. Also%2C for any woman whose Endometriosis diagnosis is confirmed to be able to have immediate referral to a BSGE specialist centre for continued treatment. Finally%2C I ask that ALL medical professionals who are likely to come into contact with sufferers of Endometriosis receive training that teaches them to LISTEN and RESPOND APPROPRIATELY and EMPATHICALLY to patients and patients' families plus friends%3B to RECOGNIZE SYMPTOMS of Endometriosis and always to CONSIDER IT as a differential diagnosis%3B to make TIMELY and APPROPRIATE SPECIALIST REFERRALS.

NO MORE DELAYS%2C DEFERRALS%2C FOBBING-OFF%2C MISDIAGNOSIS PLEASE!