I am an Endo Warrior.
I truly believe that conditions like Endometriosis need to talked about, by the people who are living with it every day. Like I am. I was diagnosed eleven years after first getting unexplained symptoms and reoccurring problems. The average time frame for diagnosis is seven years, it is just too long.
Today in this post I am going to be talking about the ways in which I manage my own Endo symptoms and how I help myself be at my most well.
I last had surgery in 2016 including a bowel resection and my organs cut away from extensive Stage 4 Endo, I had an Endometrium mass the size of a tennis ball attached to my bowel, bladder and left ovary, the majority this Endo which was removed by my specialist. I had IVF in 2017 and gave birth to my son, naturally in 2018. Since then I have been Breastfeeding my son which has helped with some of my symptoms. They began returning with pain nine months after I gave birth and have continued to worsen.
Every person with Endometriosis is different and can have different symptoms and varying degrees of problems and pains.
Once I had given birth to my son and found out he had multiple food allergies, I made the decision to cut these items from my diet in order to keep breastfeeding him. This included going completely dairy free, no fresh eggs and no nuts. I was able to have a minimal amount of Soya Milk and Coconut based alternatives.
About nine months after I had given birth my menstrual cycle returned, as did my pains. They got progressively worse as the months went on. Despite breastfeeding still, and I also began noticing other symptoms returning too.
I was bloated such a lot which added to my discomfort, so I made the decision to also cut out white bread and have a 50/50 type instead, to also reduce my general Gluten intake by half, and to eat more high fibre foods. I eat less pasta now and more rice instead. As someone who eats cereal every morning and attempts to get a minimum of five fruit and vegetables a day, I felt I lived a fairly healthy diet and lifestyle.
I have noticed a vast improvement in my symptoms since doing all this, I generally have a lot less abdominal flare ups which are often like IBS symptoms. I tested this theory several times this summer with the reintroduction of both dairy and gluten over a twenty four hour time frame, and I paid for it the day after with both severe pain and other digestive issues. This proved all I needed to know, that I was better off not consuming these items. I find I can have things such as a small amount of dairy, like chocolate chips in a cookie, and this small amount makes very little difference. But if I were to eat a chocolate bar, eat pasta with a cream sauce or a cheese pizza for example, I would be poorly the next day.
I must stress that I do eat lots of fruit and vegetables, I drink at least 2.5 litres of water a day, and I do not drink any coffee, tea or alcohol. I only drink flat fizzy drinks and I consume very little else except for additional water based liquids or occasional fruit juice or smoothies.
Every person is different of course, but you should consider keeping a food diary and perhaps cutting out a few things, one by one over at least seven days to see if you have any improvement. I shall talk more about a diary later on.
Let us now take a look at the Cycle Symptoms of Endometriosis.
Symptoms Associated with Endometriosis.
There are many varied symptoms that Endo sufferers have to deal with (most are listed in the image above). And the pain levels that people can have will vary too. Because we are all different it is impossible to know the severity of ones pain against another. Pain levels should never be compared nor dismissed, and if you have a doctor do this to you and not take you seriously then you should get a different opinion.
I made my own Health Diary Planner where I put in what I have eaten and what symptoms I have, what cycle day I’m on and I can also note my pain levels. It’s important to do all this so that a specialist can look at the correlations between your lifestyle and diet and your symptoms. Check out the diagram above and match any symptoms that you have, check against your cycle day and your diet. Look at what changes you can make easily and see if they help. Something as simple as drinking more water and cutting out some gluten could help with bloating (usually associated with hormone changes) for example. See what you could do to help yourself feel better.
Food Versus Health Diary
A long time ago when I was first diagnosed, my specialist advised that I keep track of my ups and downs. I decided to do this but one better, by learning about my Cycle, my Pains, my Food and my Digestive patterns and also my other Endo symptoms.
Sometimes things can correlate and they become frequent enough for you to begin to understand why they are happening. For example, I get Ovulation Pain, and by keeping track of my cycle on an app, it gives me a rough estimate of when this might happen. I then make sure I have pain killers on hand if it is bad, and I ensure I eat more cleanly and avoid anything that would increase my pain such as consuming too much gluten.
I can advise anyone on an Endometriosis journey to keep track of their body to help them to understand what it is telling them. Please feel free to save my Grid above and use it to track your own symptoms.
Ways I Manage My Pain
Pain is something that I often choose to cope with until it starts to affect my day or affect the way I am caring for my son. Because I am breastfeeding I am limited to the amounts and types of medication that I can currently take. Usually two 500mg Paracetamol plus Caffeine every four hours like clockwork on my bad days. I can take Ibuprofen too, but I find if I have a bad stomach this actually makes me feel more unwell so avoid it at the current time.
So I do rely on a few alternatives too. Hot Water Bottles are favourable especially at night time. I also have elasticated waist pyjamas because any additional pressure on my abdomen makes me feel worse.
The most important thing when in pain is to be comfortable and to keep hydrated. Especially if your pain levels are at their worst during your period. I usually struggle to put on tight clothing during certain times in my cycle and have a lot of items in my wardrobe for practicality.
Thank you for reading this blog post today, I hope that you have found my thoughts beneficial and if you have any further questions you can search Endometriosis on my blog, or on a search engine, or just ask me directly, if I can help you then I will certainly try.
Other Endometriosis Pieces On My Blog HERE
✩ Sabrina ✩