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. 

 

 

Published by

PIP editor

A pharmacist led training provider.