My Top Tips for Pre and Post Surgery for Endometriosis Sufferers

In the continued spirit of Endometriosis awareness month and following on from Part one of this blog series, ‘Path to diagnosis’; I wanted to give some of my top tips that I have learnt throughout my personal experience from my 2 diagnostic surgeries.

I initially had this list at the bottom of my first blog, but the more I got writing the more I wanted to share with you to help make your experience a little easier. Hopefully I have shared something that you may not have known, or just give you a little giggle.

 

Endometriosis Pre Surgery Tips

Book your surgery as soon as you are able.

In the year before my surgery, while I waited for my health insurance to kick in, I convinced myself that living blissfully unaware of whether I did or didn’t have Endometriosis was a smart option and that I shouldn’t rush to have my surgery. I decided this would prevent unnecessary stress because if I was given upsetting news about possible fertility issues as a result of the disease, I wasn’t in a position to immediately start trying for a family so I might as well not know.

Immediately after my diagnosis, I realised how floored this thought process was (for me). My advice now would be, if you have suspected endo and have been recommended surgery, get it as soon as you’re able. The validation and relief I felt post surgery about finally having answers to years worth of symptoms, combined with the ability to develop a specific treatment plan because you know exactly what you are dealing with; is far more beneficial than the bubble I was trying to keep living in pre-surgery. I won’t say my anxiety didn’t skyrocket once I received my official diagnosis, because I am dealing with a more severe case of the disease than I expected, but now I have also been given options to help increase my chances of having a family one day and can deal with them in a time sensitive manner.

 

Check if your Gynecologist is an excision Specialist.

If you have suspected Endo, book with an excision specialist or someone highly experienced in diagnosing and treating Endometriosis! Every surgery you have increases the scar tissue in your body, so you want them to do the best job they can the first time around! If you are unsure there are some great FB groups for Endo sufferers in Australia that have up to date lists of the excision specialists in every state.

 

Build yourself a team of experts, advocates and supporters.

Start building yourself a team of allied health professionals to make your journey easier. My personal one currently includes: a good GP and Gyno (Grace Private), a specialist women’s health physio (Female Physio Co), a psychologist and a naturopath (I see Evie at Face Fit and she is very knowledgeable and supportive when it comes to women’s health, hormones and fertility).

If you can, keep your close friends and family in the loop! It’s good to have people to lean on on the hard days. Second to this, if you can, keep your employer or direct manager in the loop too! A supportive and understanding workplace goes a long way on your bad days.

 

Look into what additional financial support may be available.

It is expensive to have a chronic illness, if you can, private health can help, but weigh up if it works for you. I also make use of government funded mental health care plans to deal with the mental aspect of the condition; as well as a special enhanced primary care plan you can access after diagnosis to help with the cost of some of the allied health appointments.
If you have no means to cover the cost of surgery and can’t wait for the public health waitlist. Chat to your GP to see if they think you might be eligible to apply for early access to your super to fund your surgery.

 

Show yourself a little bit of self love.

Whatever that looks like for you. Get yourself a cute new pair of PJ’s or loungewear for the hospital (my Face Fit team gave me a new pair of Peter Alexander PJ’s and a sleeping mask before I went in and it made me so happy). Get your hair done before you go in so when you are at home recovering you feel a little bit better. Give yourself a mini facial the night before surgery so you go in feeling good. Or even just pre-cook some of your fave meals and have them waiting for you in the fridge for when you get home. (My mum is a sweetie and made her Lasagne (my fave) and my Granma made me some chicken soup and fresh bread and it made all the difference having home cooked meals in the fridge when I wasn’t really able to cook for myself.

 

Lastly, avoid eating brussel sprouts the night before surgery…

The night before my second laparoscopy, I proudly sent out a pic of my healthy dinner to the Face Fit team. It consisted of salmon, potatoes and brussel sprouts with bacon (one of my faves). Nurse Brooke replied, ‘omg I can’t believe you’re eating brussel sprouts the night before your surgery’, knowing she had been a hospital nurse and probably knew something I didn’t I was like, ‘oh no, what’s wrong with brussel sprouts!?’. To which she just sent back a puff of wind emoji.

The next morning I got to the hospital early because I was first on the list, however, my surgery got pushed back a few times. When your surgeon is a gyno and also delivers babies, you quickly realise that babies don’t wait for anyone! I think Dr Fleming delivered 2-3 babies before she ended up getting to my surgery. (At the time I thought to myself, man, I’m proud when I go home at the end of the day and have made a killer spreadsheet. This lady has delivered 3 new humans into the world and it’s not even lunch time, what an incredible job!)
Anyway, as I lay in the little pre-op room and chatted to the nurses over the course of a couple of hours, I couldn’t help but let what Brooke had said get to me. In fact it’s all I could think about. I was SO worried that when they put me under and I relaxed and went to sleep, all these friendly faces that were currently chatting to me and keeping me calm, would be hysterically laughing as I loudly and uncontrollably farted for a couple of hours straight. Trust me when I say, in the moments right before surgery, IT’S ALL I COULD THINK ABOUT. Did it happen? Didn’t it? Fortunately we will never know, but I’d be lying if I didn’t say it still crossed my mind sometimes when I have to go to follow up appointments… Wondering if there is a little note on my file saying: Ashleigh (gassy). So my advice stands, don’t eat brussel sprouts the night before your surgery.

 

Endometriosis Post Surgery Tips

Have a heat pack on standby

First and foremost (because you will feel this the minute you wake up), have a heat pack on standby for the shoulder pain you will experience post surgery. During surgery you will generally be pumped with gas to expand your abdominal region and allow better visibility for your surgeon. With nowhere to escape the gas generally rises in your body and the pressure builds in your shoulder, causing pain. I found some relief by putting a heat pack on my shoulder area and laying either flat or slightly reclined (sitting and standing can be alot). I was advised that getting up and going for small walks would help ease the pain and bloating you experience quicker. However, walking around can be exhausting and painful in the initial stages of your recovery so do what feels right for your body. There are also tablets that may assist with this that you can usually get from your local pharmacy.

 

Get yourself some loose clothes for post surgery

(better yet just don’t wear pants for as long as possible after :p), this is to help with both bloating and avoiding rubbing on your surgical entry points). For me personally, things with zips like my high waisted jeans and denim skirts were the worst, because the zip would rub uncomfortably on the incision site on my belly button. When I had to wear pants, I lived in soft and comfortable active wear.

 

Period undies can be great post surgery!

(Size up for comfort).

 

Have your allied health appts already booked following surgery.

My biggest recommendation is a psychologist! My anxiety regarding infertility and future consequences of my diagnosis reached an all time high in the month following my 2nd surgery. I was triggered by the smallest things, to the point that I could hardly watch TV. I unfortunately didn’t have a psychologist booked and by the time I decided to book, then waited to get in, months had passed.

On that note, don’t start watching The Handmaids Tale to pass time whilst recovering (what was I thinking!). If you haven’t watched it, it’s basically a show where they segregate society into people who can have children and people who can’t. I give it a 2/10 for when you are awaiting your follow-up appointment with the gyno to gauge how your own fertility is looking. (For everyone else, I give it about a 8/10 and defs got hooked once my anxiety was back under control).

 

Have a women’s health physio booked.

Post surgery your muscles can tense up and a women’s health physio is able to work with you to help release these muscles (NOTE: THIS DOES REQUIRE AN INTERNAL EXAM, some people don’t realise this and can get a bit of a shock). I waited about 6 weeks to see a physio and booked because I was feeling nervous about returning to exercise after having 2 surgeries so close together. I then went 1-2 times per month and focused on pelvic floor down training (learning to be aware of and relax your pelvic floor); and 1 on 1 reformer pilates to focus on and learn how to get back into exercise while keeping my pelvic floor relaxed. (I have probably done a terrible job of explaining why this is important, so for a far more detailed and easy to understand explanation, go see the team at Female Physio Co, their education, passion for women’s health and patient care is next level).

 

Remember that you are not alone on your journey.

There is so much support out there if you know where to find it.

 

Take it day by day

Like all chronic illnesses, you will have good days and bad days and some days it’s okay to just cry a little and spend the day in bed.

 

Hopefully you find these tips helpful if you have an upcoming surgery booked! Look out for the next instalment of this blog to learn more about how I came to the decision to Freeze my Eggs and what I am doing to prepare my body pre Egg retrieval.

 

Ashleigh, Face Fit Clinic Manager & Dermal Therapist.

Ashleigh, our clinic manager joined the Face Fit team in 2020, coming from an extensive background in dental / managing dental practices.  Ashleigh also has an Associate Degree in Dermal Therapy.

If you need support on your own journey with Endo, don’t hesitate to give us a call.

Read part one of Ashleigh’s Endometriosis Journey.