I was recently approached by a Journalist called Stela Todorovic who wanted to write a piece about endometriosis. I look forward to the piece, but I thought in the meantime you all might benefit from the answers I gave about what my diagnosis was like and the experience of being treated in the UK.
How old were you when you were diagnosed with Endometriosis and how long did it take for you to be diagnosed?
I was 23 when I was diagnosed by laparoscopy. I had been experiencing extremely painful abdominal pain (daily) for about a year, and I’d seen somewhere in the region of six different doctors in that year to try to get to the bottom of what it was. I didn’t realise it at the time, but looking back now I had extremely troublesome periods since about the age of 16 that I simply put up with. I had asked for help with my period pain for every year right up until the endometriosis pain started, but to no avail.
In my opinion there were two real opportunities for help to be offered earlier. Firstly during the sex education classes I received during high school, when the topic of periods came up and what they were was covered when I was around 14. Secondly when I first asked for help with what turned out to be endometriosis pain in 2009 and was simply provided with painkillers. The pain from endometriosis is frightening when you don’t understand what it is, it is an unreal amount of pain to experience. I was worried I had something that would kill me. If someone had said much earlier, “it could be this” and “these are the steps we’ll take to rule out other things”, I could have relaxed much earlier.
Do you remember the first thought that you had in this moment? Were you relieved to finally know what was going on with your body?
Relief doesn’t really cover the feeling of a diagnosis. It’s more complicated than that. Any relief that comes with a name for your illness is extremely short lived. You start to read the quite depressing information about the reality of what endometriosis means online and it all becomes frightening again. My consultant came to speak to me after I came around from my first operation and explained how I had a smattering of endometriosis all over the place and that I had a stage two case, and how the pain wasn’t in my head. I just had to tell him that I knew that, and that he’d simply caught up with what I already knew.
A diagnosis is a word, and a single word doesn’t prepare you for the months and years to come. Most of the people I know with endometriosis just had the word “endometriosis” to cling onto. Maybe it arrived in their lives in a letter, or spoken aloud by their doctor. I don’t think many people – including myself – got a robust explanation of what that word meant in its totality. The impact it would have on my quality of life and how it bleeds into everything you do. I think that’s the aspect that endometriosis patients find hardest, that you have this word to explain the backpack of symptoms and difficulties you have, but few people find themselves in a position where someone has said; here’s what you should do now, and what will come next, and how you can help yourself.
How do you find you are supported by the health community? Have you sought out any help from a therapist in coming to terms with your condition? In Australia, gynaecologists recommend this as the next step after diagnosis of the later stages of endo.
This in my opinion is where the online endometriosis community comes in. Our national health service (NHS) is remarkable, and despite what I’ve said I do feel extremely lucky to have free universal healthcare and the protection that affords. However, it wouldn’t have managed the last few years without the information I’ve been able to research myself (including pain management and exercise) and the people I’ve spoken to who also have endometriosis. The women I’ve met both online and in person that manage and work as best they can.
Most of the women I know with endometriosis do not have access to pain clinics, they haven’t been offered counselling, few are in receipt of any state care. We don’t want to be a burden on our health service, we just want to know what help is out there so we can get on with our lives and be productive.
I don’t think any country has cracked endometriosis care sufficiently. We’ve got “whole patient care” here done really well in specialist endometriosis centres, but you have to be lucky enough to live near one. (I do not). We also have an extremely capable charity called Endometriosis UK which works hard to improve things for endometriosis patients and offer them support. There is always room for improvement (it’s a bit too much of a postcode lottery at the moment). So I will continue to campaign and lobby at a local and national level for improvement in care for endometriosis. The points I continuously raise is that improvement of endometriosis care improves the care of any patient with an incurable long term illness. They all have many of the same issues involved whatever the persistent pain may be.
The bottom line is you can live and work with endometriosis. It is possible, but it is hard. You just need to know where to start and get some ideas for what to try. I’m a big advocate for pain management and self care of endometriosis.
What was your experience with the laparoscopy?
I’ve had two of them now, I’m about to have a third. I think the nature of keyhole surgery makes it seem quite flippant and easy. The reality is you’ve had quite complex internal surgery and it takes a lot longer than you realise to recover your energy and get your strength back. Here, you’re normally discharged from hospital within 24 hours. I’d really like to see more time given to patients to give them time to recover from surgery and its aftermath. You really don’t appreciate how much you use your stomach muscles until you have stitches there. It’s uncomfortable and unpleasant to do anything for at least a week.
The worse thing to be quite honest is the unknown element with each surgery. It’ll usually go well and you’ll see some improvement in your symptoms, but you just don’t know what your consultant will see until they’ve opened you up. You worry for weeks on the waiting list (up to three months in my area) worrying about what they’ll find, how bad it’ll be, how much regrowth there will be and where if anywhere it will have spread to. This pain can haunt you every day and you can’t see it, or soothe it. You just don’t know what you’re dealing with until you wake up.
You can find out more about me and the endometriosis treatments I am using on my about page.