What is it like to depend on medicine to treat endometriosis?

 

I have endometriosis.

 

I was diagnosed when I was 16. In the ten years since diagnosis, I have taken Loestrin 20 tablets. Over the years the doctors looking after me have tried three different medicines but to no avail. I have tried mild painkillers, lifestyle and dietary changes too. These were largely experimental medication changes. Together we made various attempts to make things better for me but this inconsistency in my medicines resulted in significant negative changes to my health.

 

I kept coming back to Loestrin 20.

 

And that’s fine because it works. It has been the only medicine that I have taken for endometriosis that has helped me to continue daily life.

 

You probably think I’m making a meal of this or overreacting but please believe me that this medicine helps me to stay well both mentally and physically. The thought of not being able to access it anymore would be terrifying.

 

And that’s what brings me to my story that happened in November 2019. The day everything changed and my life took a seismic hit below the waterline.

 

This was the day that I found out after attempting to collect my prescription from my local pharmacy that I can no longer receive my treatment for endometriosis.

 

At that time I had my last pill and that was it. I was devastated, anxious and uncertain about how the future would unfold. This situation was such a travesty because my health prospects were looking really good.

 

So, of course, I asked why?

 

Apparently, the medicine could not be sourced from anywhere because of ‘manufacturing’ issues or ‘undisclosed issues’ I was told by different places.

 

I sought help from my Doctor, from NHS 24 and other pharmacies. It is a birth control pill for the general population so I was told that my Doctor can simply put me on another pill and I can get on with life as normal. It didn’t seem to be considered a drastic change with challenging knock-on effects.

 

Well, this is the problem you see because Health Professionals often see these things in a binary way and don’t consider fully the impact on us patients.

 

It is quite frankly not the case that this was a minor problem with an easy fix for women with endometriosis. I was upset about the undermining of the severity of endometriosis and changes like this to treatment.

 

I was absolutely terrified tonight about what was going to happen to my health. If I was to be placed on a new pill to ‘test the waters’ for the subsequent for next 3-6 months I would once again be playing another game of risk with my physical and mental health.

 

The times in the past this was attempted my life was turned upside down. I was not ready for this again. I felt sick. Gobsmacked. And angry.

 

I wasn’t informed by my doctor who signed off on the prescription. I didn’t hear from anyone until I went to the pharmacy and searched online.

 

What was going on? Why were patients on this medication not informed?

 

No letters, emails or phone call.

 

I was very disappointed about this on behalf of all women with endometriosis, especially those like me who have been given no warning of these supply problems.

 

Even though these events happened some time ago I have some questions for pharmacists reading this blog that I really hope they can answer:

 

Can anyone shed light on this situation?

 

What’s the plan ahead for changes to medication supplies for chronic conditions like endometriosis?

 

How are medication shortages communicated with Doctors?

 

Who or what is to blame for these shortages of essential medication?

 

I hope this blog triggers at the very least a conversation about this issue and that we can begin to work towards a solution. Obviously, my medication is extremely important to me but I cannot imagine how frightening it must be if my example involved a life-saving medicine.

 

The author of this article wishes to remain anonymous. 

 

 

“My Dad died” – The story of the pharmacy encounter when no-one listened

 

I’ve just been to the chemist to collect last night’s (many) prescriptions. Whilst I was waiting, a young woman came in, very dishevelled, a little dazed, carrying a giant meds bag. The following piece describes the encounter and highlights what happened next.

 

‘My dad died’, the girl said to the assistant behind the pharmacy counter.

 

‘These are his medications’.

 

‘Are there sharps in there?’ the girl asked.

 

‘No. My dad died.’

 

‘What drugs are there?’

 

‘He had cancer. My dad died,’ the woman said.

 

Each answer began with ‘my dad died’. Not once did the assistant behind the counter acknowledge it, no matter how many times it was said. No matter how many times.

 

How many times would it need to have been said to acknowledge the girl’s distress?

 

It’s easy to see how voices are missed when no one listens when it’s so obvious someone is desperate to be heard. I’ve been that woman with a meds bag, and it’s horrific. Every encounter is remembered. No matter who it’s with.

 

A consultant in a distant office or returning morphine to a pharmacy. You forget nothing. No one.

 

You can’t teach empathy (I truly believe this), but when someone begins each sentence with ‘my dad died’, they are asking for someone to listen.

 

The thing is when you take a history in psychiatry, you are almost an archaeologist of words. You sift through a narrative to find the fragile pieces you need. You try to make sense of the story.

 

This though, THIS, was a barn door. This was someone desperate to be heard. Anyone, ANYONE, who is dealing with patients, in whatever capacity, needs to be a listener. Because you never know when those fragile pieces will surface. And it might be your only chance to collect them.

 

You really need to ask yourself why someone is delivering their answer to you in this way?

 

Why are they choosing these particular words?

 

Listen to the beat of the narrative and ask yourself if something is wrong. If you are in a job where you meet patients you might be the only person who hears those words. What you decide to do with them can change the course of someone’s life.

 

Can you teach someone to listen? I’m not sure, but if you’re on the front line, dealing with patients, it’s the most valuable skill you’ll ever possess.

 

Joanna Cannon is a psychiatrist and a writer. She lives in Derbyshire and has a successful blog. This blog originated from a conversation on Twitter initiated by Joanna. 

 

 

The long hard road through prescription opioid withdrawal

 

I decided I wanted to come off the opioids altogether. No matter how hard that would be, and I firmly believed that if I did not, they would kill me.

 

This was when it was suggested I go into Newton Abbot Community Hospital for rapid step down of my opioids. I had begun to realise that just maybe my life could improve if I came off the medication.

 

I began to understand there was also a chance my pain might lessen. I did not totally believe this initially, but by now I felt I had nothing to lose. It was explained to me that I would be the first patient locally to go into a community hospital for this.

 

The day before I went into the hospital my pedometer read 40 steps, which would have been from my bed to my armchair, armchair to toilet and back to bed. This had become the norm. I went into the hospital full of fear and excitement all at the same time.

 

Fear of how bad my pain would become and excitement about how my life might begin to improve.

 

The pain Consultant told me he would half my dose of opioids overnight and that the next day my pain would not be worse. I didn’t believe this but was shocked to find it was true.

 

The withdrawal was extremely difficult despite taking Clonidine to counteract the worst of it, but I noticed the benefits almost immediately. Most noticeably the fact that my pain did not get worse and instead, slightly improved.  It continued to improve during the step-down process and beyond.

 

The Consultant suggested I pace the ward to help cope with withdrawal as this would help fire the endorphins, my body’s natural painkiller; it of course worked.  So I put my earphones in while the rest of the ward slept and paced and paced and paced; so much so that when he came to see me the next day my pedometer read over 2000 steps and he had to advise me to slow down a little; I had gone from 40 to 2000 overnight.

 

I also began to sleep better almost immediately apart from when restless legs kicked in which for me was a nasty part of the withdrawal.  My sense of taste and smell went a bit haywire whilst in hospital but gradually started to restore to normal, and I mean normal BEFORE opioids. My food tasted better after a while and I could smell things that previously I couldn’t, and the saddest thing is I didn’t know until I came off the opioids just how badly I had been affected by them.

 

When I got home from hospital at the end of the week the withdrawal continued but by now I was totally buoyed by the massive improvements I was already seeing, the fog was lifting and I was beginning to ‘feel’ again for the first time in years and that made the awful withdrawal symptoms bearable, it may sound dramatic but I felt like I was on my way back, to me!!

 

My mood continued to be up and down over the next few weeks, restless legs were the worst thing to deal with because it would always send me on another marathon just as I was dozing off to sleep.

 

I didn’t have the ward to pace now so I would put in my earphones and dance around the living room which would give me the same effect as pacing; this then progressed to going out to walk with my wheeled walking frame along Teignmouth seafront and anywhere long and flat.

 

I had daily then weekly contact with my CNS after leaving the hospital by telephone and in-clinic which was extremely important in those early days. I then began to access the Pain Management Seminars and met some amazing pain physiotherapists who taught me more coping strategies like Tai Chi, pacing, goal setting etc.

 

Karen and I have walked almost every day since I left the hospital and over time, we have both improved our fitness, wellbeing, and mental health. I call walking my pain relief and therapy now, we go out whatever the weather and take snacks and our cameras and I believe mindfulness plays a huge part in our walking.

 

In May 2019 we were invited to my brother’s wedding in Oswestry which was a Glamping weekend with a walk up a mountain, Gyrn Moelfre, planned for the morning of the wedding!

 

My brother gave me several opportunities to bow out of doing the walk (he and his friends were a serious walking group) after all I was his witness and I needed to be back for the wedding at 4 pm sharp.

 

Karen and I were both determined we wanted to do it, the pace was much faster than we were used to but we did it, we had extra support from two wonderful guys that hung back with us and we finished an hour after everyone else with an hour to spare before the wedding and I can’t tell you the enormous sense of achievement we felt and it is something I will never forget.

 

Two years previously I would never have believed it would ever be possible.

 

I have gradually been able to discontinue many of the medications I was taking whilst on opioids, I was taking Duloxetine 120 mg a day and it has been really difficult to reduce until I got fantastic advice from a pharmacist and now I’m down to 70mg a day. I feel confident that I will be drug-free within the next 6 months.

 

Now I am focussing my life around doing anything and everything I can to help other people come out of the opioid fog. I have been working with the CNS and Consultant that helped me, to produce information leaflets and videos for the inpatient and outpatient step down protocol. I have also become an NHS Volunteer for the Pain Service which was a newly created role. I recently became Chairperson of Involve Giving Something Back Committee which is a Patient Consultancy group seeking to improve the experiences and management of people living with chronic pain. Involves vision is to involve patients with experience of the Torbay & South Devon NHS Foundation Trust’s Pain Management Service in developing and delivering the service.

 

I was appointed as a lay member of the British Pain Society’s Patient Liaison Committee and I am also one of two lay members on the NICE Safe Prescribing Guideline for Opioids, Gabapentinoids & Z Drugs.

 

My wife and I decided we wanted to set up a walking group for people like I was when I was on the opioids, inactive, in pain and isolated. We have discovered that going out for a daily walk and connecting with nature can totally change your perspective, reduce your stress and most importantly reduce your pain.

 

We have been walking daily ever since I came out of the hospital three years ago. We trained as walk leaders last year and through Ramblers Walking for Health scheme, we set up a Grade 1 walk in a local country park. Our local pain service refers people to it. Our walking group is specifically for people living with pain, long term health conditions and/or disabilities.

 

I still live with daily pain; I still have fibromyalgia and arthritis, but I control my pain through walking IT doesn’t control me anymore. I have so far lost 8.5 stone in weight and continue to lose weight.

 

I would love to think I could return to work eventually although I couldn’t return to be a care assistant. It would be great to work in the field of pain in some way, making sure I give time for my therapy… walking!

 

Coming off opioid medication has to be the hardest thing I have ever had to do and by far the scariest but it has also been the best thing I have ever done and every day I have lived opioid-free since then has more than been worth going through the withdrawal, I would urge anyone that is concerned that their opioids may not be working for them to seek help from your GP, pain specialist or pharmacist today.

 

Louise Trewern is a patient advocate who has devoted much of her spare time to explaining her lived experience being on and coming off high dose opioids. She is also a passionate walker for pain relief.

 

A film was made of my experience by the team at Live Well With Pain Website. You can access it by clicking here.

 

 

I think my prescription opioids could have killed me

 

I have lived with persistent pain almost all of my life starting with ‘growing pains’ as a child, which sadly, did not leave me as I got older. This series of blogs describes my journey from dependence on opioids to control my pain to an opioid-free life.

 

My name is Louise Trewern and I am 52 years old. I have 4 grown-up children and am married to a wonderful woman called Karen who for many years was my full-time carer.

 

I have fibromyalgia which wasn’t diagnosed until my mid-thirties and arthritis in my knees and feet. I was sickly as a child and suffered from repeated chest infections that would have me missing school. Whilst there, I was unable to participate in sports. A the time I was told I had bronchitis, a diagnosis later disputed when as an adult I had chest x-rays which threw doubt on this.

 

The pain was my constant unwelcome companion as I entered my working life.

 

It was extremely difficult to cope with, especially as I always felt that my colleagues doubted the legitimacy of my pain experience; this meant I got quite depressed over time. I lived with the myriad of symptoms associated with fibromyalgia, chronic fatigue, widespread pain, various infections, stiffness, poor sleep, depression, irritable bowel etc.

 

Gradually my pain worsened. I developed a bad back that would “lock-up” overnight and this would mean that I could not get out of bed quickly enough to look after my children.

 

I was eventually referred to the pain service and given opioid medication which initially was marvellous. Suddenly, I was able to continue looking after my family and working part-time.

 

Over the following years, the dose of opioids needed increasing to retain efficacy and although I did not realise it, I was beginning to experience the awful side effects of long term opioid use, skin infections, noise sensitivity, gut problems, more frequent colds, which for me would last longer than my friends and family and completely knock me off my feet. I believed the side effects were my fibromyalgia worsening.

 

Many of the side effects required treating with yet another prescription medication.

 

I was hospitalised several times with unexplained severe pain, often in my chest, which was quite scary. Eventually, I had to give up work, I was unable to cope at all due to the awful fatigue coupled with debilitating pain.

 

Gradually my hospital file got thicker and thicker with all the specialities I was visiting for ‘this test and that’ which almost always were returned with inconclusive or negative results. This also had a detrimental effect on my mental health. The anxiety when the doctor says ‘you might have ‘X’ condition we will send you for a test’, then weeks or often months later, receiving the negative results.

 

I became so bad that I would hardly leave the house and hated taking telephone calls even from my family. I could not tolerate any noise in the house, and it would even hurt when the cat walked across my lap. I was unable to make any plans because I never knew how I would be from one day to the next.

 

Babysitting my grandchildren became out of the question unless Karen was with me. I didn’t trust myself not to fall asleep and my self-confidence was at zero. I didn’t feel capable of looking after them.

 

My weight had increased to 25 stone despite my best efforts to lose weight which I now realise was never going to happen because I was not active, I wasn’t sleeping, and I was on a cocktail of medications.

 

The point came when my opioids needed increasing again.

 

I was referred to the Pain Service where I met a wonderful CNS. She began to talk to me about the possibility of reducing my opioids and over several appointments taught me some strategies to cope with my flare-ups of pain. During this time, I suffered my first emergency admission to hospital for opioid-induced impaction.

 

I ended up in theatre for surgical intervention. A few months later I suffered a second and this was the final straw. The theatre staff told me this was a common occurrence for them with people on opioids. This horrified me, especially as I was taking Macrogol sachets twice a day to prevent this.

 

I decided I wanted to come off the opioids altogether, no matter how hard that would be, and I firmly believed that if I did not, they would kill me.

 

Louise Trewern is a patient advocate who has devoted much of her spare time to explaining her lived experience being on and coming off high dose opioids. She is also a passionate walker for pain relief.

 

A film was made of my experience by the team at Live Well With Pain Website. You can access it by clicking here.

 

 

 

Time to highlight the unspoken misery of HRT shortages

Emma Hartley

 

Emma Hartley is a freelance journalist from London. She wrote a story recently on the topic of hormone replacement therapy (HRT) shortages. The article examined the on-going HRT shortages and sought to find answers. This problem has had a significant impact on people suffering symptoms of the menopause.

 

Emma has delved into all aspects of the supply of HRT in the UK and beyond. She has covered issues related to the drug tariff, Brexit and has even considered the involvement of China in the stuttering supply of these vital medicines.

 

We were lucky to catch up with her and delve into the topic on the podcast.

 

 

If you prefer to never miss an episode you can subscribe on your preferred podcast platform. Just click on the links below to get going.

 

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What is it like to have Ehlers-Danlos Syndrome?

Robin Hosking

 

 

People who present with numerous symptoms with no apparent connection can be difficult to diagnose and therefore treat, especially within the typical GP appointment time. In some cases, these patients may be presenting with Ehlers-Danlos Syndrome also known as Joint Hypermobility Syndrome. It is thought to be an under-diagnosed condition due to poor recognition amongst the medical profession at large.

 

Ehlers-Danlos Syndrome is a hereditary connective tissue disorder which affects collagen which is abundant in the human body. Common signs and symptoms include hypermobile joints, stretchy skin, easy bruising, gastrointestinal problems, problems with the autonomic system and a history of pain, poor sleep, dislocations/subluxations (partial dislocations) and frequent visits to the GP/A&E. Many patients with the condition present with psychiatric co-morbidities such as anxiety and depression.

 

There are several types of Ehlers-Danlos Syndrome, some of which can be fatal such as the vascular type where dissection of vessels, arterial aneurysms and ruptures may occur spontaneously. In many cases of Ehlers-Danlos Syndrome, healing may be poor following surgery and may leave abnormal scarring. Patients require special suturing and dressing wounds requires special attention due to many patients having fragile, thin skin. Patients with Ehlers-Danlos Syndrome may find the use of local anaesthetics ineffective in minor procedures and dental work.

 

If you have any reason to suspect your patient has any of the symptoms, you should refer your patient to the GP who can refer them to rheumatology. The rheumatologist may then suggest a referral to one of the Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome clinics. University College London Hospitals (UCH) runs a Hypermobility Clinic under the leadership of specialist rheumatologist Dr Hana Kazkaz.

 

If the patient is found to have Ehlers-Danlos Syndrome, a plan will be drawn up, and UCH may make internal referrals to the pain management unit at NHNN, Queen’s Square. Patients with gastrointestinal problems may benefit a referral to Dr  Natalia Zarante-Lopez, consultant GI at UCH. Furthermore, if any neurological problems are observed, such as those pertaining to the autonomic system, it may be worth looking at referring your patient to the National Hospital for Neurology and Neurosurgery (NHNN) in Queen’s Square, in particular, Dr Gordon Ingle. The Hypermobility Clinic may recommend that the GP refers to some of these services via letter. The Royal National Orthopaedic Hospital also provides diagnosis and treatment for Ehlers-Danlos Syndrome.

 

Current treatment for Ehlers-Danlos Syndrome in adults has no NICE guidelines, though guidelines are in place for paediatrics. Treatments typically include specialist pain management which includes a psychological and physiotherapy approach along with learning more about the condition. Local physiotherapy services may be unsuccessful at treating patients due to inexperience and poor knowledge of the condition. Physiotherapy services at UCH may be more successful on the basis they have more experience and may seek advice from the Hypermobility Clinic. Physiotherapy may be useful to stabilise and strengthen weak joints to prevent further deterioration of the musculoskeletal system.

 

Good communication between patient and GP is paramount with Ehlers-Danlos Syndrome. Patients are often suffering from multi-systemic problems in the clinic, and some patients may be sensitive to typical pharmacological treatments. The GP should be understanding and listen whilst taking into account the number of symptoms and severity.

 

Robin Hosking is EDS UK men’s coordinator and an expert patient. Follow Robin @MrRobinHosking