One Year on from Endometriosis Excision Surgery – Was it Worth it?

I had endometriosis excision surgery one year ago. How has this year of recovery been for me? Do I still experience pain and symptoms related to endometriosis? Did the surgery work? How are my periods now? What would I have done differently? I decided to interview myself with some obvious and not-so-obvious questions.

September 5, 2019 – New York, New York. 8:10am. Operating room no. 7.

I was wheeled in, legs and arms got strapped and the anaesthetic was injected. I was knocked out in the hope my life would have changed when I woke up.

Over three hours later I was awake in the recovery area feeling nauseated as hell!

The surgeon came by briefly to let me know that they found endometriosis in various areas which has been excised and how there was a small rupture that occurred in the bladder which was repaired.

The nurse then told me I’ll need to use a foley catheter for five days because of this rupture. If I thought the nausea and post surgery pain was the worst thing ever then this catheter decided to beat that by a million miles if not more.

But that was all right after surgery, which I have spoken about in my post here:

• Six Months On: Endometriosis Laparoscopic Excision Surgery – Am I Better?

So you can read the details there.

But this post is about a few important questions one year on from endometriosis excision surgery. Questions I would want to know if I hadn’t had the surgery and was looking to do it.

This is like me interviewing me! 😀

Let’s begin…

How do you feel exactly one year after endometriosis excision surgery?

I am so glad I’ve reached this one year mark! It’s September 5, 2020 today and my entire year has gone into recovering from this surgery.

I know I haven’t recovered entirely yet because I still experience milder versions of post-surgery pain. This isn’t endo pain, it’s the bruised feeling you get post surgery and some movements are still troublesome but I’m okay with that because I have gotten better.

Plus, I do have Ehlers-Danlos syndrome which means I will heal slower than those who don’t have EDS.

I know that I need to continue to be patient with my body.

But when it comes to endometriosis pain – I am definitely better. Ummm… I say this with my fingers crossed in the hope that I don’t jinx myself but, yes I do actually have more pain free days now!

Before surgery, I was in pain every single day, and now it’s usually one or two days before my periods and 2 to 3 days into my period and that for me is a huge huge win!

 

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You were just speaking about how your periods are now – can you elaborate further because your first few periods post surgery were extremely painful. Did you do something different to help yourself post-surgery with your periods?

So yep, taking what I was saying a bit further. Right after surgery, my periods were horrendously painful.

I was put on a pill, a progesterone based pill that I was to take for 90 days straight and then take a break for a week for my periods and then another 90 days back on the pill. My year was supposed to go on with minimal periods to help me recover from surgery.

But that did not happen!

For example in the first 90 days of the year – January 1 to March 31, I had periods for 72 days!

This pill wasn’t working for me even after my doctor advised me to increase the pill dosage to stop it… hmppff!! I was really annoyed, and extremely exhausted. The pain was bad and there was no respite from the period.

I decided to stop listening to the doctor and start listening to my instincts and what my body was trying to tell me!

(I am NOT saying that you should not listen to your doctor. I’m just saying I stopped. We’re all responsible for our own decisions so please don’t go by what I say here).

Okay so I decided to listen to myself.

I decided not to resume the pill at the end of my period in March 2020.

I decided that I would give my body the opportunity it needs – the opportunity to figure out its cycle on its own.

And it worked.

Since April 2020, I’ve only had periods during those seven days that I should. My cycle has been regular and as I mentioned earlier, the premenstrual cramping starts a couple of days before my period and the pain continues two to three days into the period at the highest intensity before it subsides with no pain in the last two days.

But I will say this, the highest intensity is still at the same level as before I had surgery, but the change is, earlier my pain was 30 days a month and now I’m down to five! Five days of hugging my hot water bag instead of 30 is massive! 😀 (again, I hope I’m not jinxing myself)

Also another huge change is the amount I bleed. Usually I’d have heavy bleeding for five to six days completely draining me out of all my strength. But now it’s just two to three days.

So to answer the question, yes I did do something to help me and that’s to stop the pill I was advised.

Also, in the last three months I have resumed gentle stretching and I continue to use organic menstrual hygiene products.

Relevant Read:

• Eco-Friendly Menstrual Products

Is there a particular form of stretching you follow? And do you still maintain the endometriosis friendly diet?

Initially there wasn’t a particular form of stretching I was following. It was just regular, gentle stretches and pain was a good indicator that certain areas are not yet ready even for a stretch.

As pain reduced I added more stretches to more areas.

Unfortunately with Covid-19 happening and me losing access to my physiotherapist for manual therapy, taping and aqua therapy – I was sort of on my own.

I now do some basic yoga stretches, walking, a bit of what I learnt from pilates, a bit of resistance bands for upper body strength and the pelvic floor therapy that I did in preparation for my surgery.

I have gained weight post surgery because of the lack of movement, but I’m okay with that as long I’m on track to heal, because then I can eventually build on my endurance, lose the excess weight and build muscle strength, but I am quite far from that, which is where diet helps.

And yes, I have continued on with my endometriosis and EDS friendly diet.

The diet link is here:

• My Diet for Endometriosis & Ehlers-Danlos Syndrome

I also did a video on it, and that’s here:

The right diet is an absolute essential. Yes you do keep tweaking it, but the 6 principles explained in the post and video link above remain the same.

The bottom line is, my diet really helps me to maintain my energy levels despite going through chronic fatigue, EDS and fibromyalgia flares.

What is the best thing you’ve done for yourself before or after surgery?

The best thing I did was to research and prepare well for my surgery and that too from two years before my surgery even happened.

Preparing right meant I was mentally and physically in the right space going into surgery which gave me better chances at recovery.

I speak of ALL my surgery preparations here:

• My Guide: How To Prepare For Endometriosis Laparoscopic Excision Surgery

And post surgery, the best thing I did was stick to my diet, and listen to my body. I also rested a lot.

If I was told to not bend down for six weeks – I did not bend for three months because my body was in too much pain. That six weeks rule is for those who are just dealing with endometriosis. I also have EDS and like I said, I am a slow healer – I needed to listen to my body and didn’t push my body through pain.

What would you have done differently in this one year?

I’m not sure if there is anything I would have done differently or could have done differently because none of us knew that Covid-19 was going to hit us the way it did.

Not being able to see my physiotherapist has made it more challenging for me, but that’s out of my control.

Other than needing access to physio – I can’t think of anything else.

I am very content with my pre and post surgery plans.

I’ve written about post-surgery plans here:

• My Guide: What To Expect After Endometriosis Excision Surgery

You always speak about quality of life. Has your quality of life improved after having your endometriosis excision surgery?

O’ for sure it has! I think it’s the biggest gift I’ve been given.

Having endometriosis excision surgery isn’t easy on the body because it’s a multi-organ issue and neither is it easy on the pocket.

And many I know do not have the privilege I did to be able to get this surgery done.

It’s a surgery that’s brought back some life in my years.

It’s a surgery that has compelled me to share my journey through this blog.

It’s a surgery that has helped me feel more like myself. I still have my challenges with all the other conditions I have but I always felt that if there was one pain I could eliminate or have less of in my life – then I would always choose the pain from endometriosis.

I am very thankful that it has reduced.

Relevant Read:

• Can Endometriosis Kill You?

Last question… well second last – do you have any fears and anxieties related to endometriosis?

Yes I do. Endometriosis is known to come back. The percentage of how much comes back varies on how well your surgery went, and the way you take care of yourself for the rest of your life… and some unknown factors of why endo even happens all play a role.

I do fear it coming back, which is why I say that I hope I haven’t jinxed myself – because it’s a very scary, life destroying condition. I really wouldn’t want to feel that intensity and regularity of pain ever again.

Hopefully I won’t.

Okay now, last question. Is there any advice you would like to give someone who is suffering from endometriosis and is looking to understand more about their options, including surgical ones?

Please always see an endometriosis excision specialist surgeon and NOT a regular gynaecologist.

Always prepare well for surgery, understand your do’s and don’ts, work on your diet, listen to your body and very importantly, question your doctor.

Do NOT fear asking questions even if it makes you sound repetitive because you want clarity on your body and that’s your basic right.

Relevant Read:

• Ultimate Guide: How to Prepare for a Doctor’s Appointment for Endometriosis
• 7+ Things I Learnt From Endometriosis

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That’s it – it was kinda weird asking myself questions but the idea was to be helpful through a Q & A format.

If you feel I have missed out on any question, then please write your question in the comments section below and I’ll answer it for sure.

Thank you for reading.

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I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.

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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.