Since my first laparoscopy, I’ve learnt a lot.
It’s well-known that the diagnosis process of endometriosis is a long one, but it’s made me realise just how confusing it is too. The below relates to my experience, but of course, everyone’s will differ.
In a nutshell
I had my first laparoscopy in December 2016. Following the procedure, I was told some endometriosis had been found on one side and that the affected area had been ‘zapped’/burnt away. Clearly not the medical term 😉
However, since then, my symptoms have returned.
Endometriosis diagnosis – back to square one (sort of)
Feeling like I was returning to square one was disheartening. But during this time, I’d also started to learn more about endometriosis. It became even clearer just how misunderstood it is within the medical field with lots of conflicting information.
It was during this time I learnt that there are different techniques for removing endometriosis – as I understand it:
- Diathermy – where the surface of the affected area is burned away with a laser (this is the treatment I had received)
- Excision – where the affected area is removed by cutting it out
There appears to be ongoing research, but excision is thought to be the more effective of the two techniques because it removes the entire area, including the root, making it less likely to return. However, it’s more complicated so only certain consultants are able to perform it. On the other hand, because diathermy/lasering only removes the surface layer, endometriosis is more likely to return. Of course, this may vary depending on the location of the endometriosis.
The technique used is the decision of the consultant, based on their skillset and preferred method, so ultimately, who you see will make a big difference to the treatment received.
(The above is based on my understanding of reading around the subject and is not intended as medical advice.)
With the benefit of hindsight…
Isn’t hindsight a wonderful thing?! The care I received during my hospital stay for my laparoscopy was first-class, without a doubt. But the more I learnt about endometriosis, the more I realised I hadn’t been well informed. I was essentially told:
- Some endometriosis had been found
- It had been ‘zapped’ – guessing the increase in symptoms means it could’ve come back?!
- To continue taking the pill to suppress symptoms – but the pill only suppresses symptoms, it doesn’t stop the regrowth of endometriosis…
- If the pain reoccurs it’s ‘just’ chronic pelvic pain
There was no information about recovery other than ‘take codeine to manage the pain’ and ‘keep taking the pill’. I didn’t receive a discharge letter either – I was simply asked to pass a sealed envelope on to my GP (naturally, I later opened it to take a copy).
In hindsight, I wish I knew then what I know now – but hey, that’s the benefit of hindsight!
Accredited Endometriosis Centres
When I reached my tolerance limit with symptoms more recently, I knew there was no point in referring back to the same consultant again. At the Endometriosis UK information day, they talked about the BSGE website where you can find a list of Accredited Endometriosis Centres near you. I used this site as a reference but I also sought advice from an Endometriosis UK Facebook support group, asking for their recommendations – they know best! I took the details of the recommended consultant along to my next GP appointment and was referred shortly after.
Seeing an endometriosis specialist
Admittedly I went a bit O.T.T. in preparation for the consultation – an appointment like this felt like a golden opportunity. I wanted to explain myself in a concise way, as opposed to the classic where your mind goes blank as soon as you sit down! Having learnt from experience, I wrote down everything I could remember beforehand and created a timeline of my health history. The process actually really helped to clarify everything in my mind.
Laparoscopy number two
I was asked how I’d feel about a second laparoscopy early on in the appointment. I showed the specialist my discharge letter from my previous surgery and he said it told him absolutely nothing! This really threw me – how on earth can discharge notes communicate nothing?! There wasn’t any doubt in my mind that a second laparoscopy was the only way to go to find out exactly what’s going on and hopefully end this confusion.
The consultant explained to me the procedure he would use – unsurprisingly a different approach to the first consultant. He’d look from the top of the abdomen, all the way down to the pelvis and, if endometriosis is found, remove the entire area affected. Importantly, he’d take a biopsy too – again, this didn’t happen in my first laparoscopy.
I left the appointment feeling…you guessed it…confused(!) after hearing new information, but felt like I was in safe hands and on the right track.
The time in-between
I think it’s important to highlight the psychological impact during this time of confusion.
It’s as though you’re in a period of prolonged ‘limbo’ – feeling your way through and trying to get on with things the best you can. We know the road to diagnosis is often long, so you can be in this state of ‘limbo’ for months, if not years, resulting in:
- Feeling isolated
- Loss of confidence
- Increase in self-doubt
- Loss of sense of self
Be your own body’s detective!
…which brings me onto one of my biggest learning to-date. As I’ve probably said before – no-one knows you…like you! Keep investigating.
It’s great to see that awareness of hidden conditions like endometriosis is on the increase…hopefully, in time, this haze of confusion will be replaced by clear and quick diagnoses.
Can you relate to this haze of confusion? What was the diagnosis process like for you? Would be great to share experiences.