It’s my first endo-versary! I’ve learned so much this year.

It’s my endo-versary today- exactly one year since I received my endometriosis diagnosis following my laparoscopy at Addenbrooke’s hospital.  I have decided to celebrate the occasion with Mr B, dinner, and prosecco, because my diagnosis was so hard fought for. If you aren’t familiar with my story, you can read about it here or here.

Cheers- to me!

Cheers- to me!

Hitting the one year mark has prompted me to stop and reflect on my post-diagnosis journey so far. It’s been one hell of a roller-coaster ride, and I (rather naively perhaps) wasn’t prepared for what was in store for me. In the spirit of sharing, I have listed the five most important things I have learned this year that I thought might be helpful to other people newly diagnosed with endometriosis or a chronic illness.

A diagnosis is very much the beginning of the journey, not the final destination.

Sitting in my hospital bed after waking up from my surgery, my surgeon told me the news that I have severe endometriosis. I was absolutely elated because: a) it was proof I wasn’t crazy and imaging all my symptoms, b) I thought it meant that everyone would now take care of me, and c) I was excited about getting some treatment. I was SO VERY WRONG! Nothing actually turned out to be that simple, which has been frustrating and infuriating at times. Work, my doctors, and my friends didn’t seem to know what to do with me, and I certainly didn’t know what to do with myself. But now, one year on, I’m walking the road of progress very slowly each day, trying to figure out how to lead a good life despite chronic pain and fatigue. I’m confident that I will master it one day.

It’s OK to be VERY angry and sad.

I never knew I could cry so hard or so often as I have this year. These massive tears of anger and grief for what has happened and for what I’m scared my future will be. I’m surprised I haven’t dissolved my eyes. This sort of reaction goes against the spirit of how we are traditionally encouraged to cope with illness in our society- by staying positive, fighting hard, and keeping a stiff upper lip.

I did not do any of these things very well in public, although I did try, but in private I went through what turned out to be a pretty epic breakdown. I couldn’t reconcile or accept this life that I’m living with how I want my life to be- and this is still a work in progress. I also hated everyone in my life at times in a slightly hilarious teenage foot stamping way- for not understanding, for not being there.

But guess what? I’ve learned that is perfectly OK to feel like this. Politely ignore the people who tell you to ‘rise above, fight, and think positive’ when you need to and take the time you need to work though all of your emotions- the good and bad. Receiving a diagnosis of a chronic and complicated illness like endo is a huge shock to the system, more so than I ever anticipated.  You can’t predict how you will react and you don’t need to justify how you cope with it. Having some time to think things through, and grieve, and be angry may be what you need to move forward. If you can though, don’t let it rule your life. Maintaining your closest ties to family and friends is so important too and will help in the long term.

Connecting with other people with endometriosis and/or chronic health conditions is a lifesaver.

Discovering the spoonie community on Facebook and Twitter and joining a local support group has helped me retain some resemblance of sanity this year. They have been a safe haven from the well-meaning but STUPID comments you get from your healthy family and peers (‘Have you tried taking vitamins?’ ‘If they can cure cancer I’m sue they can cure what you have!’ and ‘You just need to think positive’ have been my personal favourites this year).

Meeting and chatting to other young people living with chronic pain and fatigue has taught me so much and made me realise that I’m not alone, and that I can go on to achieve things despite being ill.  I think I’ve also become a more understanding and sensitive friend this year too, which can only be a good thing and will enrich my life for years to come 🙂

Putting yourself first will not cause the world to end.

I’m one of those girls that wants to make every happy and cause no fuss or drama. There came a point this year when I realised some fuss  was very much needed if I am to keep going. I’ve stopped going to social events I feel too unwell to attend, disclosed my difficulties at work and requested some reasonable adjustments, and have stopped feeling the need to justify my actions, like how I can exercise when ill, to the naysayers. The world hasn’t stopped and people don’t hate me (well, I don’t think they do!).

Sure, some of the people I’d thought of as friends have now disappeared from my life- they can’t cope with how things of changed- but they are better off out of my life anyway if this is the case. The silver lining is that your true friends really step up into action if you talk to them about what you’ve been going through. That’s meant so much to me and has been a great lesson about what is important.

Life will never be the same again.

Having a chronic illness requires you to totally change the way you structure and live your life, because it’s not going to go away and no amount of ‘fighting’ will change that (sorry healthy people). I won’t ‘win’ this battle, but I’m determined not to be the looser either, and to do this I need to work with understanding and partnership with my illness.

I’m still getting to grips with this, I’ve learned it isn’t something that you can master over night. Sometimes I overdo things and exhaust myself. Other times, I miss deadlines because I’ve been resting a little too much. But I’m certainly getting there. I’m not sure what the future holds, and I’m completely terrified about it- Will I have children? What job will I be able to get and hold down after my PhD? Will I even be able to finish my PhD? But I trust that I can cope. I have come so far and achieved so much despite being ill. I am super girl and I will get through this.

I’d love to hear where you celebrate your endo-versary or another diagnosis date! If so, how do you do it? What’s the biggest life lesson you have learned since that day?

Love,
Claire
xxx

I blame my endometriosis!

Since being diagnosed with endometriosis I seem to blame the disease for every health problems I have ever experienced. This ranges from the obviously related stuff (e.g. stomach pains, fatigue, and heavy bleeding etc) to the more exotic complaints (e.g. every sniffle, joint pains, breathing difficulties, shoulder pain, migraines etc).

On a positive note, it is so encouraging to have a ‘label’ that enables me to make sense of all the weird things that have been going on inside my body. When I recently started getting severe sciatic pain in my leg for instance, I could look at my fiance and say ”damn endo”, take some ibuprofen, and then carry on with my life without worrying that I have leg cancer or something like pre-diagnosis me would have.

However, it occurred to me a little while ago that some of my symptoms may not be endometriosis related, but I am making no effort to investigate them as I just presume that they are. It’s like I never learn from life lessons; one reason that my endometriosis took ages to diagnose was told that I had IBS, so I attributed almost every twinge, pain or ache I experienced to that without ever questioning it.

I have this vision of having a heart attack or something when I am older, and when people try to call me an ambulance being like ”oh no, don’t worry, stop making a fuss, it’s just my endometriosis. Make me a hot water bottle and I will be OK.” :-D.

Final Grave

In the back of my mind, I sometimes worry that if I developed something serious that all my crazy endometriosis symptoms would drown out the warning signs. For now, I am just going to carry on blocking these thoughts out until my specialist hospital appointment in March. I can reassess from there I think.

So, I’m interested to know about the range of symptoms/ experiences that you attribute to your endometriosis, without being certain that it is the actual cause. Also, have you ever been ignored or misdiagnosed by doctors who attributed your concerns to your endometriosis without adequate investigation?

Love, as always,
Claire
xxx

The birth of mighty Endo Lady: Why ignorance is not bliss when it comes to endometriosis.

Let me tell you about my life in the two years preceding my diagnosis of endometriosis. Overall it was a pretty terrifying time, because I was feeling SO ILL on a daily basis with an array of debilitating symptoms such as diarrhea, sickness, abdominal and chest pain, headaches, and extreme fatigue. I also gained two stones in weight as I felt too unwell to do much more than lie on the sofa when I wasn’t at work. Despite regular trips to see a range of specialists at my local hospital over the previous four years, I was no closer to finding out what was wrong with me than I had been at my first appointment. This time was also incredibly isolating, as without a clear ‘label’ for my symptoms I found them hard to address, and almost impossible to talk about with others. People are very dismissive (perhaps understandably) if you have to use the ”something is very wrong with me , but doctors don’t know what” explanation for your ongoing illnesses. I just gave up completely in the end, and hid how I was feeling from everyone around me. But looking back, I now realise how much the endometriosis was beating me, rendering me incapable of the smallest tasks and wrecking havoc on my personal and professional life. It’s a minor miracle that I kept going at all if I’m honest.

EndoGirl

My new alter-ego ”Endo Lady”

But getting a formal diagnosis has changed all of that, and I’ve been amazed at how it has spurred me on to start taking control of my health again as well as my life in general. Knowing what your dealing with just makes things so much more manageable. It’s been like I have this kick ass alter ego who isn’t scared to get things done. I like to call her ‘Endo Lady’ and she is not to be messed with 🙂  I’m not saying that I have regained control fully yet- I’m still a long way off,and that scared and sick girl is still around most days at the moment. But I have been taking some positive steps forwards instead of the usual strides backwards. Let me give you some examples of some of the things I’ve been doing in attempt to start feeling better:

  • Exercise: I’ve been doing circuit training five days a week. Can you believe that? I’m still not sure I can. I would honestly never have thought it possible, but with the help of an incredible and supportive instructor who helps me to know my limits, it has been. And I’ve stuck to it- even when I’m exhausted, or hurting, or emotional (which is most of the time). Of everything I have tried so far, I think this has been the best thing, and it is helping me to feel stronger and more powerful everyday!
  • Acupuncture: I’m still fairly skeptical about this, particularly as the evidence in its favor is mixed and it’s freakin’ expensive. However, I decided to give it a fair go, thinking that if nothing else it can be valuable ‘me time’. So once a week, I transform into a human pin cushion. I will report back in a few months with how I think it’s going.
  • Counseling: There is SO MUCH ANGER inside of me: About my delayed diagnosis, about people constantly dismissing my pain over the years, about the impact of endometriosis on my career an friendships, and about the future. I know it’s there and I’m dealing with it, so that one day I won’t be angry anymore. I want my mental health back. This is mission self esteem.
  • Research: If there is a piece of scientific research published on endometriosis in the last 10 years I have probably read it. Endo Lady is very aware that you have to know your enemy if you are to successfully defeat it.
  • Seeking support at work: I faced my fears, and potential career suicide, by telling some senior people at work about my endometriosis and how unwell I have been. Contrary to my expectations the world did not end.
  • Advocating for my own (better) healthcare: I’ve been super disappointed with the aftercare I have had post surgery for my endometriosis, mainly because there hasn’t been any. Basically, I was given my diagnosis and then just told to go home and deal with it. That was it- no support, no advice, no medication-nothing! Pre-diagnosis I would have just left things as they are, feeling too ill and frustrated to fight my corner. However, post-diagnosis I know I can’t sit back and accept shoddy care any more, and have actually managed to advocate for myself to both my hospital and GP in a way I didn’t think I was capable of.

I know these are small steps really that every woman with endometriosis takes on her journey to recovery (or at least manageability). But it is such an improvement to me just lying on the sofa crying all the time. And this is what makes me so annoyed about how long it takes for women to be diagnosed with endometriosis- all that suffering and damage to my life just seems so pointless and avoidable. Even though receiving a diagnosis is terrifying and devastating, it can also be massively liberating. I am so much healthier (mentally and physically) than I was just a few months ago. Ignorance was certainly not bliss for me, nor is it for the millions of other women in the UK and worldwide who suffer with this disease. While my consultants said they were trying to ‘protect me’ from the risks of surgery, and that’s why they had argued against me having a laparoscopy for so long,  I am left wondering if they really had my best interests at heart on this one. I’m not sure you should ever try and shield people from the truth, whatever the risks may be.

I’d be interested to hear about how you cope with endometriosis, and what works for you. Your comments and suggestions are most welcome.

Love,

Claire