06 September 2017

Raising awareness of Endometriosis Rachel Brown, member of the NICE guideline committee

Rachel Brown tells us how the new NICE guideline should lead to a better quality of life for women who suffer with endometriosis.

Photo of Rachel Brown.

As a GP, I see a lot of women who are experiencing painful periods. Sometimes they are nothing to worry about, but in other cases it can be a symptom of a serious problem.

Endometriosis is a common condition where womb tissue grows outside of the womb. It can be found in other parts of the body such as the ovaries or fallopian tubes.

An estimated 1.5 million women in the UK suffer with endometriosis.

The cause of endometriosis is unknown and there is no definite cure. Symptoms can vary dramatically. Some women will experience terrible period pain and below average fertility, others will never notice an issue.

On average it takes 7.5 years for a woman to be diagnosed with endometriosis. This is partly down to the range of symptoms, but is also due to many GPs having a limited knowledge and experience of the disease.

There has also been a lack of good, clear, evidence based guidance, which has led to huge variation in care.

The new NICE guideline gives clear advice about how a woman with suspected endometriosis should be cared for. It details how to make a diagnosis and offer treatment in a timely manner. It also recognises the need to treat women in the right location for them.

For example, some women with mild symptoms are best cared for by their GP. But women with severe experiences will require prompt referral to specialist services. They may also need to be directed towards patient support groups.

I am confident that the new NICE guideline will raise awareness amongst patients and healthcare professionals. And that this will help us to shorten the time it takes to achieve a diagnosis.

The guideline will also enable prompt and appropriate referral and treatment, which should lead to a better quality of life for women who suffer with endometriosis.

1 comment

  • Thank you for putting this together . I had a full hysterectomy in 2005 - endo was the issue - after an ovarian cyst at 18 and many years of very very very bad monthly cycles , 3 children and life - it never got better. During a post grad it became an issue again as a mature student. It took a loccum refer me to a gynae, as my GP was not aware or in tune with what my issues were . I am now 13 years on from the full hysterectomy, and have been having the same left side pains and bowel / bladder, kidney pains on and off for about 7 years . I had no idea it could recur until I started to look it up this past autumn. At the time, there was no advise for management, other than go on an oestrogen patch ( and I have always been oestrogen dominant and have an A - blood group - both I have found to possibly be linked to endo ). I took HRT for one horrible month - then managed homoeopathically. ( with swings of depression and serious anxiety )

    I have been with my current surgery for 8 years - and I am up against a wall- again. I think the endo might be a problem again.

    My GP does not believe it can recur; he will not check or even discuss it - even though I have taken journal articles in showing him it IS possible.

    I have asked to be referred to a specialist clinic close to my home but across a border . I am told the funding from Trusts is an issue - and have today, been declined a referral even to a gynae to see if it has indeed come back.

    I went to see my 'new' GP about bowel and bladder pain in May 2017 - he told me I likely had diverticulitis and gave me pain killers. Which made everything far worse - needs to say - I did not take them.

    He would not discuss hormone treatment of progesterone, told me I was not menstruating, and did not need it . He talks over me . He has now also checked for Crohns disease, as my cortisol was up ( once more - guessing instead of listening to me or reading my history) .

    He will not listen to me, nor read my medical history . I have purchased my medical records - they came to me in a pile - not chronologically ordered, and with incorrect details of meetings, that I do not seem to be able to add to, to correct. This is adding a lot of stress and makes the condition worsen.

    I have been seeing a naturopath since Sept 2017 - thank goodness. And the supplements seem to be helping adjust my systems and helping energy levels. I am still trying to work with the surgery - but it is just a lesson in frustration.

    I have been trying to get a referral , or have him at least check to see if the endo is back - it is sadly not going to happen with this surgery.

    He has even told me the lab 'rejects' requests for hormone testing , as I am too old for these tests ( what? ), and do not hit the 'criteria' . ( I thought progesterone would help me but I wanted to know my oestrogen / progesterone ratio ) . Well, the naturopath has started to sort out my sorry mess - natural progesterone cream is helping me cope - and detoxing my gut is helping enormously - histamine is still an issue, but I am dealing with this with endo /histamine diets ( he actually prescribed an anti histamine as a sleeping aid - another 'bandaid' rather than looking at the cause of the problems )

    Tai chi is helping 'stress' ( he is causing ) and flexibility. I am a proactive person who likes preventative care.

    I think I felt compelled to write to you as I would be interested in any studies as a participant - I am now 57 - and overall healthy .

    I will be taking this NIC guideline into my surgery tomorrow , for one last hope at help. I do not feel I should have to turn to private care ( I cannot really afford it on top of a naturopath ) - but I would be interested in helping other women avoid the most horrible ignorant treatment I have experienced in the NHS.

    I certainly have no confidence in my GP, he is arrogant and unhelpful; certainly not someone I want to see when unwell, and in crisis - and that is quite sad.

    Please feel free to get in touch - my experience is not unusual, and I finally feel there is support in the system for me to get the help I need with your NIC diagnosis and guidelines recommendations. I am very hopeful it will open the door for more conversation and perhaps a scan to see if my endo is the cause of the issues I am experiencing.

    Thank you for being involved with this guide.

    Many thanks A

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