Fed up :( : Rant needed..... I have been... - Endometriosis UK

Endometriosis UK

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Fed up :(


Rant needed..... I have been told by gynaecologist they suspect endometriosis however as I am having bowel problems they have referred me to a different hospital gynaecologist as they specialise in it, so far this year I have had a colposcopy which was clear, small abnormal cells on cervix but nothing that needed treatment, had a clear hystoscooy with biopsies that are clear and just had a colonoscopy which the doctor told me afterwards was ok but ordered a ct scan which I have had and am awaiting results of (appointment Monday)

Question is why would they ask for ct if colonoscopy is clear? Also could I have all the above tests clear and still have endo?

Feel like I'm going mad, constant abdominal pain and bloating, really heavy painful periods, rectal bleeding, pain after and during sex, fatigue and generally feeling crap!

I also have pcos diagnosed in 2015 xx

Need some words of wisdom please xx

3 Replies

Hugs. It's hard trying to get diagnosed. Xxx

Find out who the referral is to and check it is a BSGE endo centre.

If so and you have bowel involvement the your gynae be reassured has done totally the right thing and acted in line with the nhs treatment spec . It means the surgeon who diagnoses you will be the one who treats you.

Bowel endo must be treated in BSGE endo centres as it requires specialist advanced laparoscopy skills and a multidisciplinary team involving colorectal surgeons.

You can read the reasons why in the NHS treatment specification


 Laparoscopic surgery for severe or recto-vaginal endometriosis is considered to be a specialised service due to its complexity and high risk of morbidity. The British Society for Gynaecological Endoscopy has established criteria (see reference in section 6) for centres carrying out such work and accredits departments that reach its standards. The criteria include:

o working in a multi-disciplinary team with a named colorectal surgeon and nurse specialist

o holding a dedicated endometriosis clinic

o operating on a minimum number of patients per year

o submitting operative and quality of life outcome data to a national database

 These criteria are designed to ensure quality care to women with complex

surgical needs to minimise the risk of surgical complication and maximise the opportunity to deliver the best outcomes. Effective experienced care such as this will reduce the cost to the taxpayer by reducing the current experience of multiple less adequate procedures, long-term medication, multiple hospital investigations and recurrent admissions.

 Referral

Patients with known severe disease, which has not been adequately treated or has recurred, are likely to be referred by primary care clinicians. Gynaecologists in secondary care who identify severe endometriosis or rectovaginal disease at laparoscopy or open surgery will refer patients from secondary care to an Endometriosis centre. Laparoscopic images of suitable quality and format will be included with the referral wherever they are available as this will prevent the need for repeat laparoscopic pelvic survey after referral.

As Starry has already said in detail: if endo on bowel is suspected then you need to be seen by a Specialist Endo (BSGE) Centre. Really, a laparaoscopy is needed to fully diagnose Endo, but a lot of general gynaes are not skilled enough to find, recognise all the types of Endo, and remove it properly, so a lap with a general gynae should be exploratory, only, in the first instance. If the Endo is mild it may be removed, but if it is extensive, or in difficult areas, then it has to be referred to a BSGE Unit.

Thank you both :) it is a BSGE centre so that's good to know! My appointment is 1st august so hopefully get things moving there, I am just so fed up of being told that contraception will make it go away and being told to wait a few more months etc etc, I have had that many ultrasounds etc this year and just felt like was getting nowhere but hopefully now I have been referred things will get moving xx

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