It’s March, it’s Endometriosis Awareness Month and March 5, 2020 marks six months since my endometriosis excision surgery (LAPEX). I felt that this is the apt time to give you all an update of how it’s been, the challenges faced and the lessons learnt so far. Everything, from zero to six months.
Please remember: that every endometriosis patient is different and is affected by endometriosis in different areas of their body, which is why, to understand where I’m coming from, here’s a short (as short as possible) background to my story.
And because I’ve gotten into great detail about these six months, below is a clickable contents list to make it easier for you to navigate through these zero to six months. 🙂
Oops… sorry before I begin… here’s a much needed reality check…
The Truth About Endometriosis Excision Surgery
Endometriosis excision surgery requires you to take time to prepare for and to heal from.
It’s not a miracle surgery, where you snap your fingers and it’s all good, but it is a life changing surgery and probably the best possible chance you get to improving your quality of life.
Today, as I complete six months, I can honestly say that I’m still quite a while away from recovery but it was also the best decision for me. Everything has a process and there are no short-cuts to it. If one wishes to improve their life then that process needs to be endured.
What has made it easier are all the bits of information I share below.
Ooo one last thing (promise)… If you wish to know everything I have experienced, learnt and understood about endometriosis then check out this resource page (that’s after you’ve read this post of mine, so keeping reading!)
My Background
Age 11 – 12
I was 11 when my periods began and right from my first period, I had severe pains (dysmenorrhea) and heavy bleeding (menorrhagia). My GP insisted that my body was adjusting to this new phase of life and that I must be patient.
6 months on, nothing was changing and it really didn’t feel like it would.
By the time I was 12, I was referred to a gynaecologist who suspected PCOS and endometriosis.
Despite a diagnostic laparoscopy being the only way to confirm endometriosis, I was told to avoid surgery at such a young and luckily was continued to be taken seriously and be treated for these two conditions.
Age 18
Age 18, I had a laparoscopy that confirmed endometriosis – but it was the ablation procedure, which within a few months worsened my condition.
This graphic from Instagram – @endometriosisaustralia provides us with more detail about the difference between ablation and excision surgery for endometriosis:
Age 35
Age 18 to 35, my symptoms of pain, bleeding, fatigue, nausea, diarrhoea had progressed to a stage where I was left with no ‘normal’ days – I was suffering and losing the desire and ability to move.
During these years I was also diagnosed with Ehlers-Danlos syndrome, suspected adenomyosis (through a MRI), chronic fatigue, fibromyalgia and POTS.
Relevant Read:
Choosing An Endometriosis Excision Surgery Specialist
After 18 months of emailing various doctors in different cities around the world – such as Frankfurt, Copenhagen, Dubai, Portland, New York – I was drained by the maddening experience.
After getting initial responses from doctors and then them disappearing on me not willing to reply after either seeing my reports or seeing my questions – it was nothing less than mentally exhausting and hurtful.
As a patient in such pain, advocating for myself – it was tough.
I did have one responsive doctor in New York, but he was known to be one of the most expensive ones with a patented dye that illuminated the endometriosis during surgery.
But it was now a choice between quality of life (with a cost that would hit the bank balance pretty hard) or waiting on doctors who had me hanging for 18 months and I was only getting worse with each passing day.
Read Here For:
With the encouragement and backing of my family, we chose to give my quality of life the best chance possible. We went ahead with this knowledgeable yet expensive endometriosis excision specialist.
I was unsure of what the doctor would say about my case, but I insisted on a surgery date before flying out because I needed to plan everything.
The doctor’s office wasn’t too happy about me being pushy, but it was important for me to have a date even if it had to be changed later because I was travelling from Mumbai to New York – a 16 hour flight. I couldn’t just come and go as I pleased and thankfully his office understood.
My surgery date: September 5, 2019.
Me, my family and my reports were all off to New York City.
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Tip: If you suspect you that you have endometriosis, or you know you do, please always see an endometriosis specialist. Regular gynaecologists are not well versed enough with this disease and I’ve come across many such doctors in England and in India.
Relevant Read:
What the Surgeon Advised
The doctor carried out an endovaginal ultrasound, asked where all it hurt and went over my case history real quick because he was of the firm opinion that we could keep going over reports and discussing the obvious – the real thing was the surgery and what results would come from it, because endometriosis can’t really be seen in MRIs or ultrasounds, so we had to go in.
As we were suspecting bowel endometriosis, a colonoscopy was advised to rule out any issues inside the colon. This was done 10 days before my surgery date.
It was all good and we were set to go.
The surgeon’s office gave me a list of do’s and don’ts to prepare me for surgery and what to expect after it.
Since I was mentally and physically preparing for this surgery for 18 months now, I was already pretty set and in a good space for this.
Here’s all that I did in the build-up to this surgery…
How Did The Endometriosis Surgery Go?
I come with one major complication – I have Ehlers-Danlos syndrome (EDS). A connective tissue disorder which brings with it the risk of internal bleeding and slow healing.
I knew that risk when I went into surgery.
On the day of surgery, I was asked many times if I was sure. I don’t even know how many consent forms I signed, but it was part of the process to confirm everything.
But I was mentally and physically prepared for whatever was to come because I wasn’t living a great life with the pains I endured every day which were increased further because of my incurable hypermobile-EDS, so I really wanted to tackle this.
Over two hours later, I was out of surgery, waking up in the recovery area feeling expectedly groggy, sore and attached to a foley catheter.
A foley catheter is a tube inserted into the bladder. The outer end of the tube is attached to a urine bag in which you’re to pee. Many times, I wouldn’t know I was peeing, yet weirdly, I was.
During surgery a small area of my bladder got ruptured, so they repaired that, but it also meant, that I had to have this catheter in me for five days.
Apparently, all endometriosis excision patients after surgery are attached to a catheter which is usually removed the same day – something I wasn’t informed of beforehand so I just wasn’t prepared for it (maybe they missed a consent form 😛 ).
And, I certainly wasn’t prepared to be attached to it for five days. And trust me, it is one of the most PAINFUL things. I bow down to all those who deal with it for much longer.
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My surgeon came to me to tell me that everything went well and believed he found multiple diseased areas, but to wait for pathology to know more.
He informed me that I also had a hernia on which he believed there was some endometriosis too.
But frankly, I was too groggy to process this information or even verbalise the millions of questions running through my mind.
Procedures Carried Out During the Endometriosis Excision Surgery
During my laparoscopic endometriosis excision surgery, excision was carried out in multiple areas such as the anterior-lateral rectum, cul-de-sac, pelvic sidewall, uretal sacral plate, ovarian fossa… the list is a little exhaustive, but this is just to give you a few examples of what I went through.
There were 13 areas that were either excised, scraped and / or restored.
But excision wasn’t the only procedure that was done.
I also had the following two procedures:
Curettage of Uterus Cavity
– In this procedure, the uterus area is gently scooped and scraped out so that it can be cleaned up and tested.
Diagnostic Hysteroscopy
– During this procedure, the endometrial cavity is looked into, just to see what the situation is looking like.
Here’s what Healthline say about this:
“A hysteroscopy is a procedure in which your doctor inserts a small-diameter device into your uterus. This device has a light and a small camera on the end to allow the doctor to see inside your uterus.”
How Many Incisions? Was There Gas Pain?
This being a laparoscopic surgery, I had four incisions. 1. belly button, 2. above pubic bone, 3. 5-6 inches to the right of my belly button and 4. 5-6 inches to the left of my belly button.
The size of the incisions ranged from 0.5 to 1 inch. Dissolving stitches were used and surgical tape had been applied on all four areas.
Quite naturally, my stomach was bloated but I didn’t go through the dreaded gas pain that goes into the shoulder. I had experienced this during my first laparoscopy as an 18 year old.
I think the reason for this was my regular consumption of salt and ajwain – if you wish to know more about this, please see point number 7 here: Endometriosis and Adenomyosis Natural Pain Relief – in fact, even point 6 will help with bowel movements without having to strain.
Relevant Read:
I would even advise you to read my post on My Guide: What To Expect After Endometriosis Excision Surgery – it explains everything I learnt to do on days post-surgery.
Another thing that I wasn’t expecting was a loss of around 90% sensation in one of my upper thighs. I was told that this would pass with time. It has reduced from 90% to 50%, so we’re getting there 🙂 But why did this happen?
It seems to be quite common when nerve endings are troubled during a surgical procedure.
Update: It took a year, but I regained 100% sensation.
First Appointment Post Surgery
Five days after surgery, I went for the removal of my catheter and the cleaning of the incision areas.
I was screaming when I reached the doctor’s office – the catheter had drained me to no end, plus I hadn’t slept for those five days because the catheter pain and surgery pain made it almost impossible to move.
The pathology reports weren’t ready by then, for which I needed to wait a further week or so.
But despite the maddening pain – I had the BIGGEST smile on my face – the catheter was out! Yayyy!
What Was I Prescribed?
I was put on a low estrogen pill.
I was to take this for 90 days in a row and then stop for a week for a menstrual cycle and then restart again for a further 90 days.
The idea was to allow me longer periods of healing rather than experiencing severe cramping from menstruation.
This was all great in theory – I’ll explain what happened a little further ahead.
So, before my next appointment, I wrote a list of questions. I made sure I was as prepared as possible.
Second Appointment Post Surgery
During my next appointment, my doctor carried out an endo-vaginal ultrasound just to make sure that everything was looking okay.
Most importantly, my pathology report was in.
I was explained this in detail, especially the areas where endometriosis was found and a video showing this (yes my surgery was filmed).
I had a list of questions, which were answered and I was encouraged to eventually get onto pelvic floor therapy to help strengthen my muscles, but this was not to be done in the first six weeks at the very least or until my pain hadn’t subsided – which could take longer than six weeks and for me, it did.
I was clearly told that it would be three months before I should expect to feel better and I was also warned to take it slower than other patients as I am a slow healer.
And I did exactly that – I listened to that warning and was extra careful.
First Period After Excision Surgery
I was already on my period on surgery day – I went through my periods for seven days after surgery but it wasn’t too troublesome because during surgery my uterus had been cleaned up during the uterus curettage procedure (as explained above).
It was three weeks after surgery that I encountered my first genuine period.
And without exaggerating, it was the worst ever. So all those people who say their first period post surgery is hell – believe them, because it is.
One would assume that because I’m on the pill for 90 days straight, I wouldn’t have a period – that was the theory right?
Ugh!! If only it was like that.
So there are two factors here:
1. The pill was started mid-cycle which isn’t a great time to do so. Usually when you’re getting into taking the pill, it’s started on the first day of the period.
Because it was started mid-cycle, the body needed time to adjust.
2. I was still in recovery mode and the body was going through it’s own confusion and turmoil of having been disturbed quite intensely so for me to expect the body to behave and for it to be receptive to medicines so soon, was too much to expect.
6 Weeks On & Third Appointment Post Excision Surgery
6 weeks on from excision surgery, you are now, in theory allowed to bend – but, it’s crazy to believe this to be gospel truth.
Instead, use this as just a guide.
Every case is different and your body will tell you that it’s unhappy with certain movements – if your body is telling you that, then it would be sensible for you to listen to it.
Because I was explained of the slowness of my healing, I made sure that I did not bend for 10 weeks. I had help with family around me so I knew I could take my time on this.
When I was in the doctor’s waiting room two weeks after surgery waiting for my turn, there was another one of his patients telling me how she started moving boxes three weeks post surgery – this was her second surgery. She went on to explain that she always wondered why her first surgery didn’t go as planned…
…I couldn’t resist throwing in my theory and asked her whether she followed the rule of ‘6 weeks no bending’ after her first surgery.
She said… well she laughed and said “O’ how is it even possible to follow such a rule?!”
I said, “when you know the destruction endo does to your life, the pain it brings, the quality of life if deteriorates and then of course the money, time and effort spent even on this surgery, why would you not then give yourself the best chance at recovery? Just getting the surgery done isn’t the treatment, the recovery time and the habits you have are just as important.”
She said… “yes you’re right. I should be more careful.”
Frankly, I find many mess up their recoveries or create new issues by being lax with their post-surgery plan.
So six weeks on from surgery, I was still in pain, still exhausted from the previous 14-day period and then another period began. Just as painful.
I also went for my final doctor’s appointment before heading back to Mumbai.
The doctor did a new endo-vaginal ultrasound to check up on me and also explained that I needed at least six months before my body started to feel better – the goal post had changed, from three months to six months.
I clearly wasn’t healing as expected – this was despite me following a plan before and after surgery – a plan which incorporated rest, eating well and giving myself time, but this was a chance I took considering my Ehlers-Danlos syndrome.
It also made me wonder – what would my state be had I not followed a plan?!
Taking Assistance
Two months after surgery, me, my family and my reports took another flight, but this was to go back home, to Mumbai. 🙂
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I took wheelchair assistance, which also meant that I didn’t need to lift a finger with my luggage whether it was in New York or Mumbai.
It was an extremely sensible decision and also an important lesson learnt that there are many facilities available to us which we feel shy to use (I do for sure), but if you put your health first, especially after surgery then you need to get rid of such inhibitions and do what’s best for you.
3 Months On From Excision Surgery
Three months on from my excision surgery, I’d had two periods.
The first lasted 14 days and the second lasted 19 days. Both painful as hell, both graced me with heavy bleeding too.
I was struggling with the exhaustion from those, but my surgery pain had started to reduce. Certain movements did cause more pain than others and it made me realise that I still needed to be careful – reminding myself that my goal post had been moved and I was only half way there from feeling better.
So I thought.
6 Months On From Excision Surgery
Months three to six, that’s approximately 90 days had me experience periods for a total of 76 days.
These 76 days were broken up into four different occasions of menstruation
During occasion number three when I had crossed 20 days of periods, I got in touch with my doctor in New York who said over email – “looks like your body is still adjusting”.
Hormonal blood tests were ordered, which turned out to be predictably normal.
I say ‘predictably’, because I’m on the pill, which is a medicine with hormones – it’s logically meant to keep it all in check.
But, to help stop my periods, I was asked to increase the milligram dosage of my pill.
Quite clearly this milligram wasn’t enough to control things.
I did just that and in a week’s time, the bleeding had stopped.
But (there’s always a but) – despite continuing this higher dosage of the pill, the fourth occasion of periods in three months had begun.
It was exhausting me more than ever. It was making everything feel worse – my Ehlers-Danlos, the fibromyalgia and the fatigue.
During these 90 days, I was also diagnosed with Mast Cell Activation Syndrome (MCAS) – I was going through severe breathing problems and allergic reactions.
I later got to know that it is believed that MCAS can cause endometriosis and exacerbate its symptoms. So I was now also on medication for MCAS, which has been brilliant for me – it’s got me back to breathing and at least now, I’m not sneezing every second, which was adding to my healing woes by shaking up my abdomen each time.
Update – September 2020, here’s a new post on how I am one year post surgery:
One Year on from Endometriosis Excision Surgery – Was it Worth it?
What I Have Learnt & Re-Learnt From My Endometriosis Excision Surgery
Today, as I mark 6 months and I read over this 6 months journey – a highly edited one. I am still in a lot of pain because my body hasn’t yet adjusted to all that has happened inside me during surgery.
But, I’ve realised and learnt the following…
1. Endometriosis is a complex condition and if you have other medical conditions aggravating or maybe even causing it, then you could be in for a longer recovery.
2. The decision to see an endometriosis excision specialist was the most crucial one. There was just no other way to do it.
3. Take whatever the doctor says as just a guide. For example, if he says don’t bend for six weeks, then don’t bend for six weeks and then listen to your body and see if it’s still asking for more time.
4. Every patient is different – every endo-warrior has endometriosis in different places and have different additional conditions. Therefore, everyone heals at their own pace.
Don’t get into the trap of seeing other people’s recovery and comparing it with your own.
I did that and it’s not a nice feeling so I stopped myself realising the mental mess I would put myself in.
5. Preparing in advance and having a post surgery plan was a very sensible thing to do. It got me into good eating and exercising habits and it made it easier to continue (at least the eating habits) post surgery.
6. I made sure I didn’t push myself to exercising or getting into strengthening my body without the supervision of a physiotherapist. I had to be extra mindful because of EDS and that caution has helped.
7. Carrying very little hand-luggage and taking airport assistance was very sensible. I didn’t have to strain one bit and that made sure I went through my journey without adding to my pains.
8. Very importantly – explaining what I was feeling, what I could and could not do to my family and friends made life easier for me. They were kept in the loop on how best they could help me and in-turn, I got the right help. And I cannot be grateful enough for this.
9. It was important to not feel guilty when family had to help me out. I didn’t realise such a feeling would even creep in but it did. But in all those sleepless nights after surgery, I had to talk myself out of that feeling and instead enjoy being taken care of because every little bit, including my mindset would help my healing.
I hope everything explained here helps someone… but I will also add, that all of us have our own journey but there are two things we owe ourselves as endometriosis sufferers… 1. prepare well for surgery 2. have a post-surgery plan.
Just having a plan can help create a path for us towards healing.
Good luck on your journey and if you wish to add anything then please feel free to in the comments section below.
If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.
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.
Keeping you in my positive thoughts and prayers for healing and to be pain-free!
Thank you so much Holly – big hug
After a hip labrum tear repair surgery, I lost all sensation in my pelvic area. I was told that the position you are in during surgery and the way they have to hold you in place can cause things like this. (This lasted for several weeks.) Sure wish surgery was the answer to our woes, but man, sometimes it seems to make things worse.
Hi, sending well wishes your way, and thank you for the article , as it is an overlook for me, as I am also endo warrior. Sending hugs your way, you are a strong women , and a great motive for all endo warriors. Thank you!
Thank you for dropping in a comment. It is very encouraging, especially when I was losing motivation to keep at writing my experiences. I’m glad it’s making a difference. I wish you all the best in your journey of health.