The most important thing that I’ve learnt about endometriosis over the past five years is that it is a relentless disease.
For those of us who have it, this usually means a increased amount of pain to manage with, pain that seems to reinvent itself every year, finding new ways to baffle and upset you.
Strangely, this is also among the hardest aspects of endometriosis to explain to others. The idea that endometriosis symptoms don’t stay on a straight path. The despite the best efforts of our doctors and consultants the pain spreads and evolves, seemingly against logic.
This is proved by the varied ways in which it can present itself in so many different ways which vary from person to person.
Endometriosis (like life) finds a way (despite everyone’s best efforts).
Endometriosis can and does recur
A common treatment for endometriosis is to cut or burn away all of the endometriosis that can be seen, and put someone on enough hormonal treatments to reduce it’s growth.
However it’s entirely possible even with this gold standard of treatment that endometriosis can regrow. It may do so more slowly than if you were never treated. There are many reasons for this. It might be that there was a lot of endometriosis “under the surface” that your consultant wasn’t aware of. There may have been endometriosis in places that you consultant wasn’t expecting that could grow relatively unabated.
You could have other pain conditions like adenomyosis, where the womb lining grows into the muscle of the womb, and cannot be seen at all.
The result for many women this can mean a circle of surgery, hormonal treatment and pain that never really goes away. Pain that is only muted (after surgery) only to slowly rise in volume and strength over time. If this sounds familiar this is because is an extremely common experience for many of us.
It’s something I hear commonly from women all over the world.
However endometriosis seems to almost be treated like an acute illness (something with a beginning or end) rather than the manipulative, painfully common long term disease that is really is. I don’t feel that enough of us are getting long term clinical support in the same way people with any other long term illness receive. We’ve left in a cycle of surgery and hormones, and the things that are missing are the explanations of how it might come back and more conversations frankly, more support in that intervening period.
The care we receive is often superb, but I’d like to see more ongoing care, more support groups, more diagnosis and care manuals after surgery, more monthly clinics where someone can ask you “how are you?” and you can actually give a decent (honest) answer.
Wouldn’t all of that mean the world to some of you?
Endometriosis doesn’t present in the same way for everyone
This goes some way to explain the inconsistency we all seem to experience in care. If you had a broken leg for example, what to do there is pretty clear. Have an x-ray, confirm the break, put it in plaster, give you some walking aids, ask you to rest the leg, come back in several weeks.
Endometriosis isn’t as simple as that, you can only really appreciate the effect it has on someone by having keyhole surgery to look inside of them. Your doctors may have expected one thing from the symptoms you described, but the reality of what’s there might be more serious or more superficial than imagined.
Endometriosis ekes into so many different parts of our lives, our relationships, our emotive states, our bowels, our bladders, our respiratory systems, our energy levels, our own personal capacity for coping with pain.
It’s no wonder then that no one prescribed journey of care suits everyone, because when faced with problems of that kind everyone reacts differently, and people have different long term goals, and expectations of what chronic pain means.
This is what makes treating endometriosis so heartbreakingly difficult.
You can be in pain even when your periods have stopped
The logic goes, that if your periods are stopped (or your womb and ovaries are removed) that should be the end of the problem right?
If only it were that simple.
The problem is some people and some doctors still expect it to be that simple. You have surgery and tablets to manage the illness long term and most expect you to be able to bounce back to good health. In reality while this will certainly remove the issues for some women, many women go on to have ongoing problems with endometriosis, even when their womb and ovaries are removed, or their periods are stopped.
There are many reasons for this, but the possibilities are that again, endometriosis can exist outside of the areas that are removed, and may not therefore offer much relief to symptoms and deposits of endometriosis can amazingly create their own oestrogen supply.
Why something’s happened is certainly important, but half of the battle is getting others to acknowledge what you already know about the pain being back despite the best efforts of your care team.
Stages bear no resemblance to the symptoms you can have
The stages of endometriosis (1-4 with 4 being the most severe), can be a bit of a misnomer as stages can often bear no resemblance to the symptoms of you the patient. Someone with stage two endometriosis could be in as much pain as someone with stage four, even though someone with stage four might have more endometriosis in their system.
It’s another great example of how we all experience this disease differently and how it doesn’t always follow precise logic.
What you’re experiencing is possible and it’s real
In my experience you know what pain you’re going through and that your experience is real. So it’s just a case of getting everyone else up to speed.
How do you manage this? By being tenacious, by not giving up when a doctor or someone else says “I don’t think it’s that”. Just remember that if you gave up when someone told you that your endometriosis pain was not possible that you wouldn’t have a diagnosis now.
If you return repeatedly to a doctor with the same symptoms, it becomes harder for those symptoms to be ignored, and even if you don’t get a solution after the first appointment, or even after the tenth, it’s now in your notes, as a permanent record and reminder to each doctor or consultant that sees you that you’ve been speaking up about this for a long time, and you expect something to be done about it.
None of this is meant as a complain about doctors at all. They know an awful lot about an awful lot of things. However it’s this generalisation in knowledge, that can sometimes mean that certain doctors aren’t capable of knowing about endometriosis to appreciate when it is being wolf in sheeps clothing.
Endometriosis is a wily, life-destroying disease that plays havoc with your body, and hides and disguises itself to look like many other things, and any delay in finding out what it’s doing to you is costing you precious time and quality of life, it’s really important that you don’t let someone else “explain it all away”. Keep going, keep nagging, until you get the answers you want.