I was diagnosis with endometriosis in February 2023. Ever since, I have researched to try and better understand the condition and to learn what I can do to reduce the symptoms as much as possible. Today, I like to share a little more of my story with you.
Wednesday 18 October 2023
MY ENDOMETROSIS JOURNEY AND DEALING WITH NHS
What Endometriosis is?
Before we get into my experience, thought it might be good to share what my understanding of endometriosis is. Endometriosis is a condition where tissue similar to the lining of the womb grows outside the womb e.g on the bladder, bowel or even the lungs. This tissue is affected by your menstrual cycle and results in pain for the person affected. This pain can be debilitating. Much worse than period pain and can also be mid-cycle. If the condition progresses, it can: limit someones life by reducing what they can do and when, negatively impact their metal health and cause embarrassing situations where you feel obliged to explain to friends, family or a workplace manager what is disrupting your life. You can find out more information from the NHS.
My Journey with Endometriosis
I started experiencing uncomfortable period pain pretty much since I my first period. I remember experiencing very heavy bleeding and painful cycle immediately . I had to always double up on painkillers (paracetamols & ibuprofen) and wear the thickest pads just to get through the day. Alongside this, I also struggled with low iron. This has left me feeling very fatigued, with painful leg cramping and nausea. I was referred to a gynaecologist when I was 12 years old due to experiencing pain in my pelvis every month. As many readers will know, a gynaecologist is senior doctor that specialises conditions that affect female reproductive organs. The gynaecologist said I had dysmenorrhea, that this is normal and to take pain killers to manage the pain.
This carried right through my teens and twenties. This was me. I learnt to cope. To book time off work I expected the pain to be worse. To be strong.
In 2022 I had had enough. I finally decided to contact the GP. Again. I was sick of having to take time off work virtually every month during my period and also week after my period. Dealing with my manager had become very stressful. He didn't understand or sympathise with me. I'm sure you can imagine this caused me a lot anxiety. This is on top of the pain I was still going through every month.
My GP arranged for me have an internal ultra sound to get more information about what was happening inside me. This revealed that I had an endometrial cyst and two fibroids. I was also prescribed mefenamic acid as a stronger painkiller and advised to take the contraceptive pill. feel that I should explain at this stage that I personally do not want to use the contraceptive pill. While I respect every woman may make a different choice, my understanding is that it is not something that should be taken for a prolonged period of time. This would be the case if I used it to try to manage my condition. I was also referred to a gynaecologist to decide on the next steps.
When I met with the gynaecologist I did not feel he - why are they always men?! - was helpful at all. He just told me same thing I had heard and tried to try persuade me to take contraceptive pill to reduce the size of cysts and fibroids. I explained why I did not want to use the contraceptive pill and the gynaecologist seemed frustrated with me. I did not feel heard or understood. I asked for surgical intervention and was told that my fibroids/cyst were too small for the NHS to operate. He booked me a further ultra sound for six months time to see if there was any changes. And that was it. I felt abandoned.
Following this my symptoms progressed. My relationship with my manager at work deteriorated. He started to use language that left me worried I might lose my job. Eventually, I had to join a union to ensure I was not being treated unfairly. My union rep was one of the first people who actually seemed to understand what I was going through. He helped me secure an agreement where I could work from home to help me manage my symptoms. Eventually, I move roles before my situation with my manager got worse.
After sometime of taking the mefenamic acid I noticed my heart rate increase when I was taking them. It turns out that is one of the possible side affect. I contacted my GP to request an alternative painkiller. I spoke to a different doctor this time and she actually seemed to care and showed me understanding. She prescribed an alternative painkiller - codeine phosphate, and helped to speed the process for me to see another gynaecologist. I eventually a second gynaecologist. They went through all the options they have for me and finally started the ball rolling for me to get laparoscopy - keyhole surgery where they will removed the endometrial tissue and fibroids. A laparoscopy is the only way to accurately diagnose endometriosis for certain but said she believes the cyst is endometriosis.
I am currently on the waiting list to have my surgery to hopefully have the endometrial tissue removed along with the fibroids. They cannot say for certain what it will be possible to removed until they begin the surgery and see what is actually happening inside. I believe that the ultra sound is not 100% accurate. Im patiently waiting but feeling very tired of this up and down journey. I have dealing with this for the past 18 years now. I want my life back. I am hoping and praying I can finally put an end to debilitating pain.
Overall, my experience with endometriosis has been horrible. I am constantly tired, nauseous and 2 weeks of the month are just agony. I have followed so many individuals suffering with this condition on social media. So many women are going through this terrible condition. We are all in the same situation and every story is full of suffering, a long wait to diagnose, being told to take the pill. It is not taken as seriously as it should be. It's very hard condition to deal with as employers aren't accepting of it and it can lead to bullying and discrimination. The waiting list just feels like never ending process and it's frustrating because it's expensive to go private. It is around £7-10,000. Which is more than most people can afford.
If you are struggling with endometriosis and don't know what to do next or just want to speak with someone that understands then don't hesitate to get in touch with me on instagram.
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