Endometriosis & the fear of getting worse

Everything’s gotten a bit derailed in my life since I developed some new endometriosis symptoms. I’ve actually had them for a long time, but only recently attributed them to endometriosis in the last month or so. Now I start the process of trying to get those around me up to speed (including my doctors) with something I know to be true.

Does this sound familiar? This process has taken me right back to my first few weeks with a terrible pain that turned out to be endometriosis, I find myself having to find my feet all over again, and while this has taken me a couple of weeks (rather than the couple of years it took me last time) it was a sharp reminder of how wily a disease endometriosis is.

It feels a little bit like I am on the doors of my diagnosis all over again, it’s a little troubling when you feel like your getting better and someone taps you on the shoulder and suggests actually you might be getting a bit worse.

As endometriosis is a progressive disease (if it’s untreated) we all face the very real fear of this illness getting worse.

How can things get any worse?

After having surgery to excise or otherwise treat endometriosis, it’s entirely possible that what was there can grow back. This is for two reasons. Firstly your consultant may have removed everything that they could see, but there may have been more endometriosis “under the surface”. Think of endometriosis being like an iceberg, you can remove the top of the iceberg, but there may be a whole other piece of ice sitting “under the water”.

Secondarily, unless you have surgery and then start some sort of hormonal treatment to stem the growth of the endometriosis it’s always possible that you could have a set back.

So what happens now?

In my case, I had the best possible treatment, everything that could be removed was removed around four years ago, (and I was even put on consecutive pills and had a mirena) but my pain persists, and it’s getting a little bit worse. For example I’m getting some new symptoms relating to my breathing (chest pain, tightness, lower rib pain, and shoulder joint pain) which I think points to endometriosis on my diaphragm, but that’s another story for another day.

If your pain persists after surgery or continues to get worse leading to a decline in your quality of life, it’s really important to stay calm and not lose hope. If it feels like you’re starting over. You’re not. You (as I’ve come to realise) may have a setback of pain (and setbacks are very common with a difficult illness like this), but you also have the immense experience of living with this disease and how to react and approach this new issue with the knowledge you have of living with this illness day today. It may not seem like that when you’re in the worst moments of pain, but you already have the knowledge, you just need to know how to apply it.

You’ve already by now what your pain limit is, what is normal for you and you’ll have started to explore how to avoid more pain. I personally manage this through pain management and pacing, so the first step remains getting yourself as comfortable as you can day to day with your new pain, and working on preventative pain methods to lower the pain before (and alongside) your return to your doctor and consultant for a new treatment plan.

Pain (and especially new pain) is not something you should have to endure (even with a long term illness). Your goal has to be on getting some quality of life back. So your first port of call should always be your doctor, but as I mentioned above there’s plenty you can try to manage yourself in the meantime.

Our symptoms from one year may adjust based on a number of factors (how much pain management we do, our medication, how much we exercise, how long we’ve been in pain). I think with chronic pain, we can almost see pain as a constant, something that doesn’t fluctuate or evolve, when it often changes in the background (for better, or worse ever to subtly over time) without us really noticing.

Find out if you’re really getting worse

I really rate keeping a pain diary, I’ve made that point once, but it’s worth making again. Sometimes you might think you’re having a terrible month, but look back six months and realise you had an even worse month that you managed to get through. Perspective on your current pain can be really useful. And who better to give you perspective on your pain than you?

Doctors (surprisingly) aren’t always the best at appreciating when something new is wrong, so a pain diary becomes a really important way to develop evidence to make it harder for someone else to brush off something you’re troubled by. It’s really important to stay persistent and keep trying to convey what you’re going through, even if the doctor may not completely agree to start with. Chances are you had a hard time getting doctors to realise your endometriosis originally, if you can manage that, you can successfully communicate this new pain.

Surviving the setback

How much is this illness effecting your quality of life? How would you rate your pain on a day to day basis. If you can start to collect your own data (say using a pain diary) of how your illness is doing and progressing, then you can actually tell definitively if you’re getting worse, or if your pain is making things too subjective, making it feel like you’re struggling when you’re actually managing better than you think (perhaps with even more pain than you started with).

Pain has a habit of making us feel trapped and isolated, especially if we rarely get a let up from symptoms, when we’re struggling we tend to exaggerate without meaning too as well. So saying stuff like “my pain is 11 out of 10 every day” prevents anyone else from understanding the range of your pain, and what the pattens to your increase in pain levels are.

Fear for the future is very real, and very normal

Some of the things things you’ll have thought about when you received your endometriosis diagnosis was what it meant for your future. Will you be able to start a family? Can I still keep working? Will it this get any worse?

While these are all valid questions and genuine concerns it’s very important not to overwhelm yourself with the ideas of what you may or may not be able to do in the future. It’s easier and generally calmer to focus on the here and now, and do what you can to provide or ease your concerns for 10 or 20 years from now.

For example, I just about manage to work full time. I spend less than most people do on travelling/buying things so I can save more for my future and retirement. It means slightly less trinkets for me now, but I have greater peace of mind about if my circumstances change.

The old adage of “crossing that bring when you come to it” is a big part of how I cope. I break my concerns down into manageable steps. Using work as an example again, “let’s see how I get on with working full time for another three months before I make a decision about what to do with my career”. Sometimes having longer to dwell on something can mean your circumstances change and prevent you from making a rash decision.

Above all though, you’ve managed this far with endometriosis, so you can manage to jump this hurdle too, that’s the mantra be using with my new symptoms too.

5 responses to “Endometriosis & the fear of getting worse

  1. Annette

    Always love your posts! It feels as though I could be writing. I take such comfort knowing someone is facing the same issues and while accepting your position, you make the most of it. You’re very inspiring.

  2. Holly

    Hi my name is Holly I’m 20 years old and I have endometroisis. I had a laparoscopy last August but im still really poorly. I’m in constant pain n I need someone to talk to desperately. I discovered your post where it describes what th pain is like and I just cried as it was the first time I felt anyone ever understood what I’m going through so thank you so much for that. At the moment I’m being pressured to have the mirena coil but something in my heart says its not what I want. I’d like to get your opinion and anyone else that might give me some advise.
    Please reply
    Thank you Holly

    • Hi Holly, I can’t give you specific advise for your situation as I am not your doctor. I’d recommend speaking to them in the first instance. If you have misgivings about the Mirena I think it’s important you share them with them truthfully, and try to explore what about that treatment isn’t making you comfortable. If they’re a good doctor they will listen and either give you the reasons why it may be a good idea for you and crucially give you an alternative.

      I should say that I do have a mirena and it has helped me in the long term – but only after about 10 months of very bad pain that I was persuaded to manage through (by my consultant) because of the long term benefits. With hindsight it was a good treatment for my circumstances, but it was also extremely hard to endure more pain for that long, and it’s not something that everyone can do. So please speak to your doctor and consultant.

  3. Dawn

    Thank you! I feel as if you are telling my story.

  4. Lauren

    Thank you so much for this blog, and especially this post! I’ve had a hard time getting my loved ones to understand just how wild and varied the pain can be day to day. I had my first laparoscopy a couple days ago. I am definitely worried about it coming back, and I’m scared that I won’t have as much support if I need a second procedure. I’ve spent years trying to get an actual diagnosis, so I think I still have the mentality that everyone around me thinks I’m over reacting or that it’s just in my head/cramps/etc. It’s hard to depend on others when you’re not sure they believe you wholeheartedly. Luckily, I at least have a very understanding professor who is okay with me missing classes. Hopefully the surgery will end my pain or at least make it manageable. For me, good days are the days I’m able to get out of bed and walk at all.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.