Living with endometriosis is something that 1 in 10 women will be doing. It is a condition that causes chronic pain and often results in surgery as a treatment.
Treatment may come with its own issues, such as temporary or surgical menopause and infertility. Before you get to that stage, there are other treatments that have helped others, such as what we discuss in this interview.
Interview – Living with Endo
Team member, Kim was recently interviewed about her experience with endometriosis. In the interview, she shares her story about living with endometriosis, her symptoms, how she struggled to deal with the diagnosis and home remedies which have helped her symptoms.
Please could you give me a bit of a background about you?
My name is Kim Otterson, I am 25 and an Accounts Manager at Our Remedy and Vape & Juice. I was diagnosed with endometriosis in 2017.
How did your initial diagnosis make you feel? Were you relieved that they had found the cause of your symptoms? Or was it only the beginning of your journey?
I was diagnosed after having a laparoscopy in 2017. After having the operation I was very relieved and felt like I had some closure as I had been battling with bad periods since I was about 13.
The hardest part was before my diagnosis was confirmed, as this was when I heard about endometriosis and thought that was what I had.
I did a lot of research and really struggled mentally coming to terms with the fact that I would be living with endometriosis.
However, I was doubtful about my options as they were contraceptives and the pill hadn’t worked very well for you. I also heard horror stories about the implant and the injection.
This then just left the Mirena coil which I didn’t know a lot about and they are not keen on offering this to someone that hasn’t had children.
Looking back now I probably had endometriosis for many years before being diagnosed. From a young age, I was diagnosed with PMT and tried many different medications like the contraceptive pills, hormone tablets, painkillers and antidepressants.
I was constantly at the doctors and they were forever changing the type of medication I was on to try to find something that worked.
Finally, I was starting to feel like I was getting somewhere after battling the symptoms, hormones and appointments for years. I am not sure that the endo journey ever really ends.
There are things that can be done to suppress the symptoms, but it is something that will always be there. Thankfully I have been very lucky as my symptoms are much more manageable. I do not have as many flare-ups as I used to, which makes living with endometriosis a little easier.
Each end sufferer can have different symptoms, what would you say your main (and most debilitating) symptoms of endometriosis are?
For me, my most debilitating symptoms were excessive bleeding, tiredness, bloating and pain in my abdomen and back. Before I had my laparoscopy and Mirena coil fitted I had excessive bleeding. My periods on average would last from 2 weeks to a month, it was very rare if a period lasted less than 2 weeks.
I was taking the contraceptive pill in my teens up to when I had the Mirena coil fitted to help lighten my periods. This worked for a while. I would still have severe cramps, bloating and long periods but the bleeding wasn’t as heavy.
When my period ended I would never know when it would start again. Sometimes it could be a month and sometimes it could be a couple of weeks after. This was very draining I was always tired between battling the bleeding and pains while juggling work life.
My family could always tell when I was on my period not just because of my mood swings the week before but because my skin was much paler. I am surprised they noticed because I am pretty pale already.
Since I have had the Mirena coil my periods last less than a week and aren’t as heavy as they were. I still suffer from pains and flare-ups but the symptoms are much more manageable.
Could you describe what happens when you had a flare-up of endometriosis? What sort of pain are you in?
I would often have time off college or work when that time of the month came around. Paracetamol and ibuprofen didn’t really work for me so I would often take codeine which helped but would also space me out. I couldn’t function well and would struggle to focus, either because of the medication or the pain.
Endo flare-ups are so unpredictable I could get up and go to work with no problems then out of nowhere would start getting pains and headaches. The pain can vary sometimes it’s like a dull aching and feels like there is something just constantly scratching at my womb, and other times it will be sharp stabbing pains.
It is very hard to know what is period pains and what is an endo flare-up as everyone is different and I don’t know how long I had endometriosis for before being diagnosed. Although the symptoms were getting worse they were also normal for me.
Did being in pain with endometriosis symptoms take its toll on you on a regular basis? How so?
Endometriosis doesn’t just take a toll physically but it takes a toll mentally, it is very isolating. Although I have lots of supportive family and friends it is hard to explain the symptoms and how it makes me feel.
I found it much easier talking to someone that has endometriosis as it wasn’t something I had to try and explain. They already understand due to experiencing the same thing.
It is so important to be open about the struggles that come with endometriosis. I would still tell my family and friends when I am having bad days or good days. I couldn’t let my feelings bottle up otherwise I would feel very depressed and that is not a good combination with the symptoms I was having.
The symptoms were regular ranging from 2 to 5 days a week but sometimes I could go a couple of weeks without having bad symptoms. It was very unpredictable. I tried different things to improve my health and wellbeing such as vitamins, CBD, essential oils and diet.
Dairy impacts my symptoms so now I only have milk in tea and use a coconut milk for coffee. Alcohol impacts my symptoms too. I will normally have a flare-up the day after I have been on a night out. If I have been doing a lot of heavy lifting or vigorous exercise this can also cause some pain.
Often I find with chronic and invisible conditions, outsiders don’t know how much pain you are in and can be quite dismissive of your symptoms? Have you ever found this with friends or family members?
I have always worried about what people think when it comes to endometriosis being an invisible condition especially as the most common way to explain it, is as a severe case of period pains.
Thankfully I have not had any issues where people have been dismissive. Not only have my family and friends have been supportive, but my work has been too. When I have needed time off for hospital and doctors appointments or operations this has never been an issue. There have been many appointments over the years.
I am sure there are many cases where people are quite dismissive I think this is due to there not being much awareness for the condition. It has only been the last year or two that people have begun to raise awareness and openly discuss endometriosis.
Five years ago I couldn’t even tell you what endometriosis was. It wasn’t until my friend was diagnosed that I found out. She was telling me about her struggles and told me she thought I had it too because she knew I suffered from bad periods.
I went to the doctors and told them I thought I had it. Then I had an ultrasound where they found some fluid, not long after I was being booked in for a laparoscopy.
Since period pain, in general, can often be dismissed as trivial, do you find explaining that it’s not just ‘normal period pain that you can take paracetamol for’ hard?
It is very hard to explain endometriosis pains. The easiest way to explain it to someone that doesn’t know what endometriosis is, as severe period pains. Period pain is often dismissed as trivial therefore it is a very underwhelming way to explain it.
I think people are becoming more understanding and sympathetic regarding period pains. It is something that is more openly spoken about then it used to be.
I work in a male environment and have been very open about my situation, they have also been very compassionate about it. This could be down to times changing and people being more open to these discussions or purely down to the personalities of the people I work with. I know there will be cases where employers will not be as understanding.
Have you ever found you’ve suffered in silence when living with endometriosis?
I’ve always had great support from my family and I think this helped me not to suffer in silence. Someone would often come to appointments with me because I would find it quite hard to talk about without getting emotional because it made me feel miserable and totally drained.
My hormones were all over the show and I was tired of the constant battle with my body. I would always forget to ask the doctor questions or forget what the doctor told me because I would get myself in a state.
Some people will find things hard to talk about but I think it is crucial that you do talk about it because you will need support and people to carry you through the bad days when you are living with endometriosis.
What other aspects of your life would you say your endometriosis affected, ie: family life, careers, relationships etc?
Endometriosis definitely affected many aspects of my life, including socially and my relationships. Obviously it is not very nice for your partner and family to see you upset and in pain.
Although you can gain some strength through people’s support they will still feel helpless as they have to watch you suffer and there isn’t anything they can do about it. I am sure there were times people were fed up of hearing about it as well because who wants to be around a Negative Nellie all the time.
My partner has been very supportive throughout my experience. When I had bad days he would look after me. Whether that was giving me a hug if I needed it or leaving me to be on my own, preparing my hot water bottles and bringing me tea.
After having a laparoscopy I would recommend having someone at home to help I was quite surprised at how difficult picking something up from the floor could be and how tired you can get from just walking around the house.
My social life definitely took a dive because I wouldn’t feel up to going out. I just wanted to stay home or I couldn’t go out because I felt sick and wavy because of the painkillers I was taking.
It is very easy to isolate yourself from people. Other than taking time off for operations and appointments or the odd day off my career remained intact.
What advice would you give to someone who has just been diagnosed with endometriosis?
To anyone that has been diagnosed with Endometriosis, I would say that feeling of hopelessness and sadness will pass. There is a light at the end of the tunnel.
It is important to talk about how you are feeling and accept people’s help when they offer it. This will help you get through difficult times. There will be long periods of time between waiting for appointments during this time. I would recommend researching the condition to make living with endometriosis as easy and pain free as possible.
You might also, try changing your diet and figuring out what causes a flare-up.
Even though my symptoms have reduced since having treatment there I am always trying new things to manage my symptoms to get by living with endometriosis.
As I have got older, the less I like taking medication and will explore every other route before taking painkillers. I use hot water bottles and heat pads, cooling pads for headaches, vitamins to help reduce tiredness and CBD to relieve pain and reduce mood swings.
When did you start using OurRemedy and what effect did you find that it had?
Rachel has also struggled with the issues that come with being female. This seemed to be a common issue within the small group of women we work with on the Our Remedy team.
Rachel thought what better way is there to empower women than to create another product by women that covers important aspects that we are all passionate about; cruelty-free products, relieving period and endo symptoms, reducing plastic waste and recycling. This is when Our Remedy was created this is a CBD product aimed at women to help with periods.
I had used CBD e-liquid but only when I was at home as I found it could make me light-headed. Our Remedy, I have found that using CBD consistently in the form of drops doesn’t make me feel light-headed and works much better than using it as and when.
Using Our Remedy every day helps to keep my pains at bay. With the help of Our Remedy and having a Mirena coil now it is very rare for me to have a flare-up. My mood swings are nowhere near as bad as they were before I started using Our Remedy. It does take a week or two before you start noticing the effects of CBD. However, the wait is definitely worth it in the long run. Although it may not work the same for everyone.
With my symptoms being reduced I have found my mental state is much better and my social life has been restored. I am also over the moon to find a herbal remedy that works for me.
The essential oils used in Our Remedy not only taste good but they also have their own benefits that go hand in hand with CBD. Clary sage helps to calm my nerves and reduce my stress levels: Peppermint is good for your digestive system.
Do you have a story about living with endometriosis and what has helped you? Share it with us on [email protected]