What now?

Wednesday 26 April 2017

 

So you’ve just found out that you’ve got endometriosis….now what? Over the past couple of weeks a few people have come to me for advice on what they should do post diagnosis and asked how they should manage their symptoms. I’ve been very honest with them in saying because everyone’s circumstances are so different, I don’t think there’s a blanket one size fits all approach. At the end of the day it comes down to the individual – deciding on how you want to approach things, what you’re willing to try, how much money you want/have to spend, and ultimately giving your body a bit of time to respond to the trial of various things. So although I’m unable to provide a miracle quick fix or a straightforward list, I thought it might be quite helpful to provide 10 guiding points that pose some questions that will help you move forward and/or get you thinking.

 

I’m not the type of person to say “you should do this or you shouldn’t do that” – because at the end of the day you need to do what is right for you, and one person’s pain management plan may be entirely different to another’s…and that is perfectly okay, no judgement. It’s taken me 7 years to get to a point where I’m comfortably managing most of my symptoms, and I’ve got to that point by working away at different aspects bit by bit.

 

I’ll point out that most of these things will require some work and commitment from you, as well as being open to trying new things. Some will appeal, and some you’ll know are not right for you at this point in time. I’d start with the things that are most concerning for you and go from there. Please remember that I am not a medical professional, just a sufferer who has found some answers after trying a million different things.

 

  1. Food. Have you ever experimented with your diet before? Removing gluten, dairy, processed sugars and foods that cause inflammation can be helpful (tomatoes, capsicums etc.). You don’t need to go cold turkey here, there’s nothing worse than feeling like you have all of the restrictions in the world and can only eat lettuce…but start by removing one thing at time - go a week without gluten and see if you feel any better. By doing a form of an elimination diet you’ll start to work out what your body likes and what it doesn’t. Some people find relief in removing alcohol, soy and red meat – I do. I found food to play a huge part in the management of my symptoms and explored this option further - doing muscle kinesiology testing and advanced blood tests through a naturopath to work out my intolerances.
  2. Hormones/contraception. Are you going on the pill or getting a Mirena? Or would you prefer to try and manage your cycle naturally? It’s important to have a plan in place so that you feel comfortable with your periods when/if they come. Discuss possibilities with your doctor/specialist and don’t feel pressured to go on anything. Sometimes it’s nice to give your body a break – that doesn’t mean that medication doesn’t have its place. For me, a Mirena caused me more pain than it was worth, and I didn’t like the oily skin and weight gain that came from being on the pill…so I went on the depot injection for five years. After a realisation that I’d been pumping my body with hormones for far too long, I made the decision to stop getting it in 2015. I was starting to think about getting my body ready to conceive and wanted to see what would happen. It’s taken a good couple of years for my hormones to balance out, and my PCOS means they’ll always be a bit out of whack.
  3. Your gut. Do you get gassy and bloated after eating or experience problems going to the toilet? Maybe one day you’re constipated and the next you’ve got diarrhoea? Perhaps your bowel gets messed up from the pain medication you’re taking and you’re left seeking laxatives to provide some relief. You have a couple of options here – start by playing with your diet and see if this helps, it might be worth looking at a FODMAP plan. If that doesn’t provide any relief and you’ve been having trouble for a while I’d investigate the possibilities of leaky gut syndrome and/or parasites…this is what happened to me. I had a series of colonics to flush out my system and followed a detox diet of soups, juices and plain mashed foods for a few weeks to let my gut lining heal itself. This was all done with guidance and support from health professionals. I’m now a huge believer in natural detoxes on a regular basis and often do 3 day juice cleanses.
  4. Pain management. Have you thought about what you’re going to do if you get really bad endo pains? I have a hot water bottle in my draw at work and take slow releasing magnesium tablets every day as a preventative. When the pain gets really bad, if I’m at home I take a hot bath and force myself to go for a bit of a walk – even if it involves leaning on my husband to stand up. My gynaecologist told me that you need stretch out the nerves when this happens – curling up in a ball just makes it worse. Perhaps you have a selection of drugs on hand – tramadol, codeine, OxyContin, ibuprofen…that’s an option too, and it’s worth having a little survival kit in your hand bag. I used to rely on these drugs, but once I realised the damage they were causing on my gut moved away from them and now only take them as an absolute last resort.
  5. Anxiety and stress. Are you scared to go out and socialise in case you have an episode of pain? Feeling self-conscious or constantly worried about your situation and trying to stay on top of it mentally and physically? It is 100 per cent normal to be feeling these things. I highly recommend talking to a counsellor or life coach. After my surgery, I thought I was coping (in denial clearly) and ended up suffering from what they called ‘post-operative depression.’ I’ll admit that my mum and husband pushed me to speak to someone…but since doing it, I have taken the time to see a professional when I feel like things are getting too much. There is no shame in talking things through with a third party! It’s also nice feeling like you’re not dumping your sh*t on your friends and family all of the time.
  6. Fatigue. If you’re anything like me you may feel like you have no energy. This is normal and you have to get used to listening to your body – if you just can’t fathom the thought of doing something and need to stay in bed, stay in bed. You might like to explore the possibility of adrenal fatigue, which is any decrease in the ability of the adrenal glands to carry out their normal functions. Most commonly associated with intense or prolonged stress…something that my naturopath found I was suffering from. This isn’t something you should read about on Google and self-diagnosis – seek medical advice if you think you have the symptoms.
  7. Sex. Does it hurt? Have you lost the desire/drive to have it? This is not normal and it doesn’t have to be this way! A few things could be going on – 1. You might have scar tissue from your surgery sitting in a place which is pressed against during intercourse, 2. You associate that area with pain, so your brain, without you even realising automatically sends messages to your body and you tense up in defence and protection mode…which leads to pain. Both of these things were happening for me – so I saw physiotherapist who specialises in women’s health.
  8. Exercise. Is it painful? Do you pee a little when you skip or jump? Have you been told not to go to yoga or CrossFit? People are always going to have differing opinions in this space. I used to get immense pain from running – but after pushing and persevering I overcame it. I still find now that excessive core work causes discomfort, and sometimes I pinch nerves around my scar tissue that triggers pain. I agree with the professionals when they say don’t do Pilates…but find yoga (especially yin) to be amazing. Movement is all about common sense, if it doesn’t feel right…don’t do it. If it’s motivating you to keep active and release some stress – I’m all for it.
  9. Fertility. Are you worried that your recent diagnosis is going to affect your chances to have children? I know it’s easier said than done, but try not to worry. Plenty of women are able to conceive naturally – and some even find pregnancy cures their endometriosis. If conceiving naturally is not an option, there are other ways to get help – both holistic and medical (depending on how you want to approach it). If you’re really worried I recommend talking to your gynaecologist about freezing eggs and/or starting the fertility process. As there can be a bit of a wait to get seen, it can provide peace of mind knowing you’ve got the ball rolling. A positive note here is that because you have a known medical condition you get additional points on the system that makes you eligible for publicly funded IVF.
  10. Friends and family. Are you having trouble explaining things to your loved ones and getting them to understand how you feel? Use the spoon theory. With this theory most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions. When you are healthy you expect to have a never-ending supply of “spoons.” But when you have an autoimmune condition such as endometriosis you need to know exactly how many “spoons” you are starting each day with and allocate them accordingly. A shower might take 1 spoon, work might take 6, cooking dinner 1 more and going out with friends 2. Before you know it you’re out of spoons. Spoons are well recognised in my household, I can tell my husband that I have no spoons left and he knows exactly what I mean. This theory was created by Christine Miserandion.

 After my first operation I was basically just sent on my way…I wish someone had been able to give me some guidance and suggest these possible integrative treatments. Although thinking back, I probably wasn’t ready to hear them. Either way I hope that these help as a starting point and get you thinking about all of the different things you can do (when you’re ready) to make your life a little bit easier and less painful.  


My biggest piece of advice…don’t get caught up on losing weight. After surgery you can feel like a big fat whale - my first thought was that I needed to get back into shape after weeks in bed. But this wasn’t the right mindset, I needed to focus on restoring my health and let the weight loss come as an added bonus. If your mind and body are in a terrible state – you’re never going to lose weight.

 

Watch this space, more helpful hints and informative blog posts coming soon x.