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Robyn's Webinar Write ups

Mr Oliver O’Donovan

Lead for Endometriosis @ St MIchaels, Bristol.

oliverodonovan.com

Thursday 23rd July 2020 @ 1900



So, this was a free online webinar hosted by Spire Bristol with one of their lead Endometriosis specialists. It was quite basic in its explanations about Endo but did have some really interesting facts and information about why they do certain treatments and so on.

He used a lot of resources from the Endometriosis UK website throughout.

He initially spoke about some of the main questions he gets asked in his clinic, the most common one being “What can we do about Endo?”.

To be able to answer this question, we need to better understand where Endo comes from and what stage it is at.

Ive written about this before so will try keep this brief but Endometriosis is believed to be a bit of a mix of different diseases/issues in the body. They also believe it may be retrograde menses whereby the lining of our womb that we shed during a period, doesn’t exit the body properly and therefore finds itself within our pelvic cavity and thus leads to the problems we face.

There is also research looking at whether Endo is a genetic disease - there have been miscarried foetuses as young as 16 weeks that have been found to have Endometriosis deposits in their uteruses. New born babies have also been identified as having endometriosis lesions and deposits so that would fit the narrative that it was a genetic condition.

Other ideas are that it may just be new growth of endometrial tissue, an immune response in the body, an environmental issue OR all of the above combined.

We are still very unsure of why Endo manifests the way it does.

Obviously, its important to identify whether pain that we are experiencing is normal or whether it is Endometriosis. This is made tricky as everyone experiences and feels pain differently however, other symptoms such as pain in rectum/blood in stools, blood in urine - especially around the time of your period -deep pain post sexual intercourse/orgasm, infertility and poor quality of life can be other things to look out for.

Why do the doctors have to examine?

Dr O’Donovan acknowledged that examinations, both internally and externally can be deeply uncomfortable for a lot of us but reassured us that it provides them with a lot of information.

Abdominal examinations can help identify any abnormal lumps and where the pain is located whilst an internal examination provides them with a good view of the cervix - endometriosis deposits have been identified on peoples cervixes. They are also able to feel abnormalities through an internal examination.

What can my GP do to help?

Ultrasound scans (USS) in the first instance.

Sonographers - those who carry out the USS - who may not regularly scan for Endo may only be able to identify large endometriosis deposits and not the smaller spots.

Mr O’Donovan stated that not being able to see Endo on an USS is very much a myth.

With specialist training, sonographers are able to identify endometriosis on an USS with up to 95% accuracy - these types of sonographers are often based in BSGE accredited centres (more on that later).

MRI - This scan is not better or any worse than an USS, it just photographs the body differently and allows us to see organs from a different perspective.

Finally, Surgery. Mr O’Donovan stated that they are trying to move away from Surgery as a first port of call.

They are also trying to move away from the staging “mild/moderate/severe” as it doesn’t fit with the lived experience of Endo and instead aim to identify Endo as either superficial or deep infiltrating.

Superficial and deep Endo are treated slightly differently and Mr O’Donovan explained it really well.

If you have superficial endometriosis, so little spots that don’t infiltrate other organs or tissue, operating on and cutting this type of endometriosis out, tends to lead to more short term relief. If the endometriosis is deep then cutting it out tends to lead to longer term relief.

So its important to have an idea of the type of Endometriosis through the use of the specialised USS, MRI and examinations/pain diaries before proceeding with surgeries.

Surgery for Endo focuses on these main things:

  • Cutting the Endometriosis away and not burning/cauterising is far more affective.

  • Freeing of adhesions

  • Hysterectomy may help in SOME cases - very much an individual thing.

  • Removal of ovaries due to damage or scarring.

  • Possibility for removing parts of affected bowel, stents to ureters or re-implant them if they are severely affected.

Mr O’Donovan also spoke about functional bowel disorders and their prevalence in people with Endo.

Functional bowel disorders include constipation, diarrhoea, mucus in stools, bloating and the inclusion of trigger foods such as pasta, alcohol, dairy etc.

He states that the vast majority of people with endometriosis will have one or more of these functional bowel disorders running alongside their endometriosis with each condition making the other worse.

Treatment options for these issues include laxatives, dietician input an a faecal test called Calprotectin if required.

What is an Endo centre?

BSGE - British Society for Gynaecological Endoscopy.

There are certain specifications and standards that BGSE centres meet before they can be BGSE accredited. This includes access to Endometriosis specialist surgeon and nurse as well as a urologist, colorectal surgeon, radiologist and pain team.

If you want to find a BGSE centre near you, you can visit their website.

Fertility

Endometriosis occurs in 40 - 50% of women with fertility issues.

He reassuringly said that most women with endometriosis don’t struggle to fall pregnant and that we must explore all possible causes of infertility before approaching surgery.

If mild/moderate or superficial endometriosis is apparent, cutting It out may improve a women chances of falling pregnant.

If someone’s Endo is severe and/or deep infiltrating, IVF is their best chance of falling pregnant. If Endo is the only reason a woman is failing to fall pregnant then IVF is often very successful.

For more Information:

NICE Guidelines - these are our National Institute of Clinical Excellence guidelines for Endometriosis, published in 2017.

He also states that the Endometriosis UK website holds a lot of information should we need it.

Finally, we moved onto the questions at the end.

This webinar was being viewed by a few medical professionals but also some lay people who suffer with endometriosis so the questions were quite mixed.

I didn’t hear the question but his response was that Progesterone can help slow the spread of the disease but is not ideal if wanting or trying to get pregnant.

Can Endometriosis be found elsewhere in the body?

YES!! He has seen endometriosis tissue in peoples wrists and their toes as well as their brain, lung and liver!

What do we do if our GP isn’t listening?

Find a new one! And Stand your ground!

How quickly can it return post surgery?

Entirely variable! Some people get so relief from surgery whilst others live for years without reoccurrence. They are still unsure why this is.

Are there Endometriosis awareness programs for GP’s? BRILLIANT QUESTION!?

Apparently, there is a lot of work being done by doctors like himself on a governmental and national level to try and increase GP’s and doctors understanding of the condition. The aim is to better inform and educate those trying to help us.

Does rectal pain = Endometriosis?

Not always - there are a lot of causes for rectal pain so would need to thoroughly investigate.

Is it possible to treat endometriosis without taking drugs?

Yes - lifestyle/diet changes can help but won’t stop it entirely.

Surgery can be considered to be a treatment that does not involve taking drugs?

Does menopause make Endo go away?

Most peoples Endo gets better post menopause because the drop in oestrogen means the end doesn’t have any to feed from. If someone has adhesions and scarring, then that will be what continues to cause pain in post menopausal women.

Can Endo look like PCOS on an USS?

NO - PCOS has a very distinctive structure on an USS.

Access to acupuncture/holistic therapies?

GP may have access but this varies wildly.

Pain team may have access to these therapies but a Gynae Consultant won’t.

Is Fatigue a symptom?

100% YES!! It is unusual for it to be the only symptoms but dealing with constant pain will and can be very draining.


Pelvic Pain Management

Friday 24th July 2020 @ 1300

Manchester

Dr Edi - Osagie

As with the webinar from yesterday, this webinar began with a basic explanation of Endometriosis and the debate about whether it's genetic, immunological or hormonal?

Dr Edi - Osagie suggested that it could be a systemic inflammatory condition rather than a gynaecological one specifically.

There are different types that are often managed slightly differently.

  • Peritoneal - superficial endometriosis

  • Ovarian - cystic endometriosis

  • Deep infiltrating Endometriosis - nodular

  • Uterine - Adenomyosis

  • Extra genital - on the outer genitals with scope for local excision

In order to differentiate between the above, a specialist must be involved especially as untreated ovarian issues can lead to torsion (twisting of the ovaries that results in loss of blood flow and death of ovaries/ovaries bursting), inflammation and pain. This in turn can lead to adhesions and blocking of the fallopian tubes.

Dr Edi - Osagie reiterated that Endometriosis can affect any organ.

Pulmonary Endometriosis



What you can see is pulmonary endometriosis so endo that has been found in the lungs. The left image shows the endometriosis prior to having GnRH medications (Prostap/zoladex etc) and the image on the right is post GnRH. Interestingly, the patient was one of Dr Edi - Osagies and she went on to successfully have children before having her ovaries removed in a follow up surgery.

Prior to the GnRH medication, treatment for pulmonary endometriosis was extensive thoracic surgery with multiple complications.

Dr Edi - Osagie linked a really interesting study by Hadfield et al from 1996 discussing the lengthy processes people have to go through to be diagnosed with Endometriosis. As so many of us know, all these years later, not much has changed.

He also discussed how, despite researchers best efforts, we are still yet to identify what we call a ‘biomarker’ for Endometriosis. An example of a biomarker is the breast cancer gene - we can test people for such a gene/biomarker to determine if they are more susceptible or likely to get breast cancer in the future.

We are yet to find one for Endometriosis which is why it is not routinely used in the diagnostic process.

There is also no evidence to suggest that Endometriosis increases your risk of cancer.

A good history alongside specialist Ultrasound scans, MRI and Endometriosis specialist surgery are the best ways to diagnose currently.

History - severity? Is it cyclical? Location of pain? Quality of Life?

Exam - Abdominal, internal - are they tender? Fibroids? Ovarian Cysts?

Lab Tests - White cell count and CRP look at possible infection for cause of pain?

Urine test to rule out urine and kidney infections

CA - 125 - biomarker for possible cancer. Done as precaution.

Ultrasound Scan - Is there a mass? Depp infiltrating Endometriosis?

When to refer? When severe and function limiting - missing school/work.

Dr Edi - Osagie stated that, unfortunately, for many people with Endometriosis, they often have other co - morbidities (other conditions that can impact their life) which in turn makes managing our conditions much more complex. A holistic approach is key - medical, surgical and complimentary.

As there is no cure for Endometriosis, the main aim of Endometriosis treatment is to relieve pain, improve fertility and improve quality of life.

Why might surgery fail??

  • Case selection not appropriate

  • Severity and surgery performed may not

  • Skill level of surgeon - specialist or general gynaecologist

  • Adjuvant Therapy - Prostap/Zoladex used prior to surgery to ‘turn off’ endo may help?

  • Genetic/Biological reason - poor healing etc

New Drugs currently in early stages of treatment:

Dienogest (Visanne) - good for people who can’t tolerate combined pill or are sensitive to oestrogen.

Dr Edi - Osagie advice to people with Endometriosis:

  • Patients to take control of their symptoms - writing a pain diary is really useful for both patient and Consultant.

  • Dietary changes - identify triggering foods etc

  • Seek out Specialist support.

I hope everyone has found this helpful.

If youve got any questions, send them our way - we can do our best to answer them.


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