Endo Warriors: Anonymous

Wednesday 14 June 2017

Today we’re meeting a lovely lady who would like to remain anonymous. This endo warrior initially sent me an email saying my blog was like reading her life, and that I should keep up the great work. I asked her if she’d be keen to share her endo story and experience as a physio.


Tell us a little bit about yourself...

I enjoy sports and being active, this seems to take up most of my spare time. I live with my hubby and our dog Fred. I am a physio and have a great wee rural clinic. This last summer I have been doing Half Ironman’s and did my first "swim/run" race and loved it!


Tell us about your endo symptoms and diagnosis...

My symptoms started at university but I didn't know what it was. At university I had lots of bloating and bowel issues. It really effected my running and sports. I had to strategically run just after I had been to the toilet or it wasn't a great outcome. Then when training for Coast to Coast and on race day I got this really strange abdominal pain with radiating groin pain. I had no power and couldn't ride. I was over an hour and a half slower than my training rides and came in with the back bunch, which isn't me. My periods themselves weren't painful though, this would happen at the end of my period so didn't link the two. On other days I was fine, racing and training well and then when I had these days...BOOM I was toast! Riding was the worst, running wasn't great and kayaking/swimming were fine. Because I didn't realise the pattern I had some AWFUL races, which really tested character hehe. Then it got worse and on these bad days I would start getting abdominal pain and heat around my abdomen. That night I would sweat out 2-3 kilos and would barely be able to do anything for a day or so and then be completely fine. The GP wasn't sure what it was but sent me to a gynaecologist who was amazing and picked up straight away that it was endo. Then I read about the gluten and endo link and stopped gluten and that settled my bowel and bloating issues.

I have had two surgeries for it and luckily after the second I got a Mirena as well, that combo and lifestyle changes has worked really well for me and I was asymptomatic for 5 years. The recovery from the surgeries was huge for me. I was an emotional wreck! It took me a while to get back into exercise afterwards but when I finally did it’s been the best long term management thing for me. That and the GF diet and I try and eat lots of fruit and vegetables, I don't do well if I haven't been eating well.


What made you want to be a physio?

I have always been fascinated in the human body and always loved sports so the then physiotherapy seemed like the perfect fit. I have absolutely loved this as a career. I really enjoy working with people and the variety of conditions and great people I get to meet in this clinic makes it a really enjoyable job.


What do you recommend women do after endo surgery to build strength?

I had big issues with abdominal swelling/bloating when I tried to do things too early after surgery. It really affected my core strength too. I think the key is to be patient and build up slowly. Be walking for at least an hour before you even start running and then start running as intervals run/walk.

Having any abdominal surgery means you lose core strength so making sure you build that up again so you don't get other injuries down the track.


Are there any forms of exercise women with endo shouldn't be doing?

Nothing I can think of. I know for me when I was in that inflammatory stage of my cycle or I wasn't controlling it well, high intensity interval training used to give me abdominal pain. I presume this is because so much blood is being directed to the inflammation and the high intensity work took it away causing pain?? I also think that's why riding was so bad for me because the core isn't being used on the bike and the blood flow was in my legs and that lack of flow to an area that was inflamed caused pain too. I have absolutely nothing scientific to back that up, that's just how I reasoned it out.

So my only recommendation would be to possibly alternate the type of exercise you do and keep it full body and at a lower intensity if you get abdominal/pelvic pains at certain times of your cycle.


What would you recommend someone who is having trouble controlling their pelvic floors do?

There's nothing in the body that can't be strengthened, it’s just about finding what your current level of strength is and building up from there. If for example you only have grade 1 pelvic floor strength and you wanted to do box jumps into a deep squat that require say grade 3-4 strength - you are going to have problems. It won't help your confidence and as it will overload the pelvic floor so much, it will set you back. So then walking and box step ups are better exercises and when that can be done with control then the exercises can be built up. Also, be patient, strength gains can take 6-12 weeks to move through a grade.

There is lots of research saying if there is inflammation in an area it negatively affects muscle control so you may find at points in your cycle you are grade 5 and others you are grade 1 so being mindful of this and adapting your exercise to suit where you are at.


Endo and pregnancy

This isn't a field of expertise for me, I just wanted to share my experience. So my surgeon told me to not wait too long to have kids because we will most likely have problems. That's obviously a hard thing to hear and at the time I wasn't ready for children. We waited until we were ready. I was in a real funk with trying, initially being told it would be a hard road and we will have problems just gave the whole thing a really negative slant, then I had a miscarriage, I wasn't in a great space with it.

Then I was talking to my coach who's a pretty cool person who said to me, “I believe every bubba wants a mum who chases her dreams and shows what it means to be fit and healthy so one day you'll make the perfect mumma.” That made me cry, a lot, and was the best thing for me to hear. So last summer I had the BEST time, I did some amazing races and just concentrated on being fit and healthy and happy. I did things I loved and had the best time doing them!

And now I am 14 weeks pregnant :D :D. When I have meetings with the midwife she always tells me how healthy I am and how bubba has the best wee environment in there. It’s so nice to hear after being told for so long that I'm not right for having kids. My heart goes out to those trying and having a hard time, this way of thinking really helped me and I hope it can for you too.


Any last words?

Endo is a tough beast to manage. I am so thankful that I have found what works for me and I hope you can too! Our bodies need movement and activity to be healthy so keep doing as much of that as you can, if not helping your endo it does wonders for our headspace.