Music and medical cannabis: Regaining control after years of pain and anxiety

Can you tell us about your journey with endometriosis and how it all started?

I've actually been on this journey since about 12 years old, when I first started getting my period. From my very first period, I experienced more than normal levels of pain, and I was bleeding throughout the month.

In an effort to control the bleeding and the pain, my doctor decided that I should go onto the contraceptive pill. But it didn't really help. My period pain just got worse and worse. There are only so many times you can say, "I've got pains" or "I've got cramps". 

It got to the point where my teachers just didn't believe what I was telling them, even though the pain was so bad that I wasn't able to participate in sports or even go out with my friends. You know, normal kids' stuff.

But it all really kicked off when I was about 19 or 20. The pain intensified, and at this point, I started looking for answers again.

I was seeing a bowel specialist because the doctors thought I had Crohn's disease, but it wasn't. Then they thought it might be IBS, then it was inflammatory bowel disease, then it was ulcerative colitis. Just a long list of potential diagnoses, but nothing was ever confirmed. 

They were just throwing all these different medications at me, but it got to the point where I thought "I can't take this any more." I knew that it wasn't an issue with my bowel, but the doctors kept insisting that it was.

Finally, when I was twenty-nine, I had to demand a referral to a gynaecologist. This was in 2011. The first gynaecologist I saw diagnosed me with stage two endometriosis. Then, in 2012, they did a laparoscopy, and then they quickly realised that was it stage four. It was everywhere.

And, how effective did you find the care that you received from your healthcare providers?

In my experience, there is a certain level of misogyny in the gynaecology sector. Of course, not all specialists, but definitely some. I felt like the doctor was questioning my motives and if I was even being truthful - "Is it all in your head?", "Are you sure you're in that much pain?",  "Are you sure you're not just trying to get stronger medication from us?" And you feel like you are completely judged for something that is out of your control.

A doctor once then told me that my endometriosis "was a punishment from God"  because women are "designed to have children, and when we don't have children, it's a punishment from God. God gets angry and he punishes us."

My jaw was literally on the floor as he was telling me I was being punished by God for something that was out of my control.

But, before (and after) being referred to this doctor, I was really put through the wringer.

What treatment options were you prescribed to help manage symptoms?

After the laparoscopy in 2012, I was given a GnRH inhibitor, which switched off my oestrogen production and put me into synthetic menopause. You can have up to three rounds of this, but each round decreases your bone mineral density, which can cause osteoporosis and other issues down the line.

The first round was okay. That lasted for three months. I went into menopause. I had all the menopause symptoms, which wasn't fun, but I could cope with it. I thought I was only going to have one round, but the gynaecologist (the same one who told me my endometriosis was a punishment from god) insisted that I have two. So, I had two rounds, and during the second round, I don't know what happened, but I was very, very close to taking my own life.

It was awful. If my friends hadn't turned up when they did, I wouldn't be having this conversation with you right now. 

I wanted out. I was done, but I'm not that kind of person normally. Normally, the glass is half full. I always try and think with a positive mind. But when I was on this medication, I couldn't see clearly. It was almost like I was trapped inside my own brain, and I was rattling the bars trying to get out and telling myself to stop. But I couldn't. I couldn't stop.

The doctors put the bad reaction down to the fact that the ingredients for this second round of medication were slightly different from the first. That's pretty much all the explanation I got.

This is when I thought, "I really need a second opinion". 

Seeking a second opinion

In 2013, I was referred to one of the best endometriosis specialists in the UK, who was amazing. He didn't judge. He knew I'd tried everything. He'd seen my medical records. He knew the journey I'd been on.

All up, he did three surgeries. The third surgery was only supposed to last about 40 minutes, but it ended up being a three-and-a-half-hour operation. He said it was the worst case that he'd ever seen. He actually now uses my case to teach other doctors, because it was that bad. I was covered in scar tissue. I had endometriosis on the bowel, the bladder, the colon, the uterus, the cervix, the fallopian tubes, the ovaries - it was everywhere.

In many endometriosis cases, a hysterectomy is often recommended as a final treatment option. However, for me, it wasn't an option. Sure, if you've got fibroids on your uterus, fine, get a hysterectomy, because then the pain will stop. But if you've got stage four endometriosis, and it is literally everywhere, taking out uterus fibroids isn't going to take that pain away. It's not going to cure that.

18 months ago I saw a new specialist. I was really happy because it was a woman, and I was thinking, finally, someone who would understand. But she was awful. She essentially demanded that I try the GnRH inhibitor again, and was saying that I'm keeping myself ill by not trying it.I was thinking to myself, "I almost died. I could have killed myself".

I was really looking forward to having a woman specialist, but this was, quite honestly, the worst experience I've ever had. She said I should get more surgery, even though the amazing specialist I had previously (who had done the three surgeries) had already said that I couldn't have any more surgery. Luckily, there was an endometriosis nurse in the room, and she said to the doctor, "Maybe you should have a look at Carla's medical records to see that the last specialist had already tried surgery."

I couldn't believe that she had not even looked at my records. It was insulting, and I felt like she wasn't taking me seriously as a patient. Her response was, "Well, I can't read everyone's notes".

At this point, I knew it was time to look for other treatment methods.

So, how did you first hear about medical cannabis?

I remember seeing the story of Alfie Dingley - the little boy with epilepsy. I  saw that his mum was fighting for him to have legal access to cannabis oil and that the police had confiscated it from them. That’s what first put medical cannabis on my radar. But at that point, I still thought it was only for kids with epilepsy, not for my condition.

Then, a few months ago, a friend asked me if I had tried cannabis oil to help with my pain. Again, I had no idea that it was a legal treatment option for endometriosis, but they assured me it was.

So, I went online and started to do some research. I first thought it was only CBD that was available to me, but it's not the same without the THC, it's just not the same at all. I kept reading that for medical cannabis options to be effective for endometriosis, it had to be a full spectrum product that contains THC.

Then I came across an article talking about the best medical cannabis companies in the UK, and Releaf was at the top of that list. I took a look at the website and was really impressed, so I started the process of becoming a patient, and here we are today.

And since starting medical cannabis, what differences have you noticed day-to-day? 

I can't tell you how bad the pain can be. Some days, I just wish I didn't wake up. It's tough when you're in pain every day, it affects every aspect of your life. You don't want to go out.

Before all of this, I was a working musician. But I couldn’t do that any more - stand for long periods of time on stage. And stress also seems to make my pain worse.

It's not been long since I lost my mum, and my dad is actually battling the same disease that killed my mum. Every time the phone rings, I am worried it’s going to be bad news, and that brings heavy stress. But since I have started on medical cannabis, things have been a little easier.

But, from the first time I took the medical cannabis, it felt like I could finally take a deep breath and breathe out. I'm not saying the anxiety completely goes away. It doesn't. But it definitely decreases it to a point where I can think a little bit more clearly.

In terms of pain, bedtime is when it becomes almost unbearable. I can't sleep. I can't get comfy. I'm constantly moving. My legs are throbbing. I was prescribed Tramadol before starting with medical cannabis, and even though it kills the pain, I was constantly waking up. I would wake up every two to three hours, and most mornings I was totally exhausted. But with medical cannabis, I can have some before going to bed, and it does help me fall asleep faster and stay asleep throughout the night.

Have you experienced any side effects since starting treatment? 

While it has been mostly positive, there have been a few bumps in the road.

I was originally only interested in getting prescribed medical cannabis oil, as I had heard that was really good for inflammation. But unfortunately, it didn't really agree with me. It caused me to have quite an upset tummy - and because of my endometriosis pain, I don't need any more pain in that area.

I have a really sensitive tummy, no matter whether it's medical cannabis oil or it's a new medication from the doctor. My body just seems to have an aversion to taking medication. The doctor advised that I wait a month, and then very slowly and carefully start to re-introduce the cannabis oil, so we will see how that goes in a few weeks.

But it has been the opposite with the medical cannabis flower. I haven't had any side effects at all.

Before getting my prescription, I did get to the point where I resorted to buying cannabis from someone in the street because I was so done with the pain. I didn't like that, It made me feel like a criminal, and you never know what you're getting when you buy it off the street.

I really like how much information there is on my prescribed flower option - it seems much "cleaner," if that makes sense.

It's not just the medication, though.

The staff is amazing, too. Every time I have had a phone call or sent an email, everything is sorted by the next day. They're really helpful. The doctors are great. You're not judged in any way. They're just really nice. They put you at ease, which, when you start a new type of treatment, especially something as new as medical cannabis, you can feel really anxious about it. 

But with Releaf, it's not like that at all. From the staff who answer the phone and emails to the dispensary staff and the doctors, everyone is just nice and approachable.

And lastly, what are your hopes for the future in terms of how your treatment might enable you to live a fuller life?

I am looking forward to trying the oil again, alongside the flower that I have been prescribed. The flower works well for the pain and does make me less anxious, but I am hoping that the oil can make a marked difference in my anxiety levels.

Just knowing that I have the oil and flower ready and waiting for me when I do experience the pain helps with the added anxiety, and I also feel like I am fighting against the pain a lot less than before. When I am in pain, it can get to a point where it is hard for me to focus on anything else, but when I take the flower, it lets me have a bit of a reprieve.

So that's what I'm hoping for. I'm hoping that as it goes along, my anxiety and pain will continue to improve. But even if it doesn't get any better and stays at the level it's at now, I will actually be happy - because the pain level I was at before I started with medical cannabis was, I couldn't carry on like that. 

It has definitely been helping, I am so much better than I was three months ago (before starting treatment with Releaf). And I am really hopeful that in another three months' time, I'll be feeling even better!

I would love to get back to playing live music, but I am not at that point just yet. 

I used to gig with a few different bands, playing a bunch of different styles. From my solo gigs to singing backup with other ensembles, it was a massive part of my life. It's only in this past year that I have had to pull back from it a bit. It got to a point where, after every gig, I would be in so much pain. I felt like I had to constantly push myself and my health out of the way to get through the gigs.

So, hopefully, with the changes I have made not just with medical cannabis but also with my diet and lifestyle, I'll be back to where I was before my diagnosis. That's my ultimate goal - to get back to living a fuller life and not feeling held back by my condition.