I attended the Endometriosis UK 2014 information day, and this is what I learned.

Endometriosis UK is the country’s leading endometriosis charity, and each year they host an information day to enlighten and encourage people affected by the disease- either personally or professionally. Last Saturday, the event took place at The Hospital Club in central London, and was attended by around 100 women with endometriosis, their family members/ partners, clinicians, specialist nurses, researchers, and charity volunteers.  I don’t intend to write up a detailed summary of what was covered during the event, but if you are interested you could check out this post on the excellent Endo Hope blog, or the event twitter hashtag which was #EUKInfo2014 . However, I thought it might be useful to highlight what I personally gained from the day, and why I think that attending events like this are empowering when suffering from a chronic disease.

Talking to and gathering with other women with endometriosis is inspiring, empowering, and comforting.

The day after receiving my laparoscopy when I received my diagnosis, I joined a local support group. I felt really overwhelmed and realised that I couldn’t carry on like I had been- alone and scared, and that I could really benefit from the wisdom and support of others in a similar situation. Some of these women from my group came along to the information day with me, and I found their company so helpful, as I found the day emotionally intense in some ways. It was so good to spend the day in an environment where people understand what you struggle with on a daily basis- I can’t quite describe it, but I almost feel physically lighter, like I can be my true self for a while. Many of the women who attended the information day had received their diagnosis a long time before me, and I think it is comforting to see them there, surviving and (in some cases) flourishing. It gave me some real hope for the future, that things perhaps won’t be as bad as I worry then will be in the middle of the night.

So many of the women there are totally kick-ass too! I really admire that. There were women who dedicate their time to volunteer for the charity to run support groups or work on the helplines, professionals who dedicate their lives to support women with endometriosis, and women who speak out publicly about their endometriosis on blogs or in the media. While I have been a weepy mess in the last few weeks since finding out about my endometriosis, I have never been the kind of person to sit back and do nothing when things get tough. As a feminist, I have been pretty vocal about a variety of women’s health issues over the years- so it’s almost ironic that of all the diseases to have I have one that seems to align itself so perfectly with my interest in this area. As soon as I can, I need to join these ladies in their mission to promote awareness of this disease and to advocate for higher quality care- because I am determined that endometriosis will not stop me from being kick-ass too.

Another vital piece of information I gained from these women is that, after receiving an endometriosis diagnosis, it is OK to feel (very) upset and sad. I know this one probably sounds obvious, but it honestly hadn’t really occurred to me.  Eight weeks in, I kept feeling frustrated with myself that I hadn’t just ‘got over it’ and bounced back, and because I keep crying all the time. I suppose the problem is that when you’re young, you don’t know how to be chronically sick- I’m lucky that the worse thing I’d ever had before this was tonsillitis. But waiting all the time to get better, and putting pressure on myself to do so, was really taking its toll on me by the time I rocked up to the information day. When I was tearful at the conference many people approached me to offer their support, which I was so touched by, and they all told me that same thing: That coming to terms with the condition takes time- often at least a year. This has been so much help, and over the past week I’ve really tried to give myself a break and take off the pressure. And do you know what, I think that is helping, as I have felt much more positive lately, and have taken some really proactive steps to help myself manage better in the future.

So, I just want to say a massive THANK YOU ladies, you’re my heros and I look forward to getting to know more of you over the coming years 🙂

I am not alone in having endometriosis on the diaphragm, and in thinking this condition presents a unique set of challenges.

Around 3 years ago  began experiencing a burning pain in my back and shoulders that would radiate up my neck and into my face, as well as into my right arm at times. Being a natural workaholic in a desk based job, I thought I had developed a severe case of RSI, and went through phases of having massages, and getting pain killers from my GP. However, my laparoscopy revealed endometriosis on the right of my diaphragm, which explains all these symptoms, and also the difficulty breathing I have sometimes experience. For me personally, having endometriosis on my diaphragm has been one of the most painful, frightening, and isolating aspects of having the disease.  There is little information about it online, and I haven’t met anyone else with it- even at my support group.

During the ‘pain management strategies’ talk by Dr Natasha Waters (a Consultant Gynaecologist at Western Sussex Hospital NHS Foundation Trust) at the information day, an audience member asked about how pain resulting from endometriosis on the diaphragm should be treated and managed. Dr Waters said the questioner is very unlucky to have this condition, and although surgery is the only way to fully treat this- she would not recommend it because it can be a complex and risky procedure. However, she also signaled that pain management should be no different than for other aspects of the disease, and can be tackled with painkillers.

This is slightly ridiculous, but I burst into tears during the discussion of this question, I think because I was surprised (and relieved) that this was being addressed. When the session ended, I went over to meet the questioner- as did three other women who also turned out to have the disease on their diaphragm. One had even suffered the serious complication of catamenial pneumothorax– where the lung collapses during menstruation, which I found really upsetting for her. We shared our stories and swapped contact details- and I hope we all stay in touch and support each other to get support and treatment with this. It was kind of interesting to me that we all agreed that if we could get rid of our endometriosis in one area this one would be it. I think this is an excellent example of how national gatherings like this are an excellent opportunity to network with others in a similar situation to yourself- and how empowering that can be. I feel in a much better informed position to approach my GP about this now.

Proactive management to your own care is pivotal.

Somewhere in the midst of the talks and discussions on pain management, fertility treatments, approaching your GP, and working with endometriosis, I had an epiphany. I have been waiting for somebody else (a doctor, researchers, my family, or just ANY BODY) to come and save me. After all, when you’re ill that’s what happens right? Some super doctor swoops in with a miracle cure to make you better again.  Or your mum fixes you. During the information day it sort of dawned on me that this isn’t going to happen- and that I need to start being better at proactively managing my care in every way, from managing my pain and fatigue, to self advocating for my care by seeking a referral to a specialist endometriosis center. For a relative newbie to this chronic sickness game, this is revolutionary and empowering stuff.

Dr Dimitrios Marvrelos (an Academic Clinical Lecturer at UCL) spoke at length at the information day, and was particularly clear that specialist centers are where it’s at for women with endometriosis, as a multidisciplinary and holistic approach is taken to providing care, by a team of well informed and well supported experts. I am now convinced that such a referral would be useful for me, particularly as I have some slightly specialist types of endometriosis, such as on my diaphragm, lungs and bowel. I would also encourage other women to discuss this with their GP.  I have also realised that the entire world of pain relief does not consist solely of ibuprofen. I am hoping that, armed with this information, I will be in a  much more positive place with my health this time next year- which is such an encouraging thought.

How to communicate about endometriosis to my employer.

This has been a big worry for me since receiving my diagnosis in August. Over the past few years I have been trying to hide how ill I have been from my boss and colleagues, and have worried that admitting I’m ill would look weak and unprofessional. I know that is ridiculous, but without a diagnosis I didn’t have the right words to say what I needed, and with it, I worried that they wouldn’t understand and just think I have period pain or something.

So in the afternoon session I deliberately went along to a session on ‘work and benefits’ looking for some tips on how I should procedure in dropping the E-Bomb to my boss. It was led by Carol Pearson, who is a trustee for the charity, and was set up as a forum where she asked broad questions and then encouraged people in the audience to share their thoughts and experiences.  When asked who had experienced difficulties at work as a direct result of their endometriosis, I would say that 80% of the women in the audience raised their hands- which is pretty sad and shocking, but again, I suddenly realised I am not alone in struggling with this.

Even though I can be very shy in a big group and find public speaking challenging, I decided to make the most of the opportunity and ask a question: ”Does anyone have any tips about telling your boss about your endometriosis- because I am so scared to do it.” Very unexpectedly, I burst into tears mid-question, which was slightly mortifying- I don’t think I’d really accepted how much this problem has been affecting me. Again, everyone was totally lovely and supportive about it, and offered some pretty great advice, which I have outlined below:

  • Frame the narrative in a way that is meaningful for your boss and which does not allow them to potentially dismiss it as a ‘women’s problem.’ For example, it was suggested that you could say something along the lines of ”I have an illness which causes internal bleeding, and this causes me a lot of pain and exhaustion. To manage this, I would recommend that we do the following things…”
  • Approach HR in your company to seek advice on how to tell your boss, and what reasonable adjustments you could expect.
  • Also, think about what you may find useful before approaching your employer, so you can work towards a way of embedding these.

I actually used these techniques at work and with my boss a few days after the information day, as I was fed up of this problem hanging over me, and I found that it worked really well. I’m so glad I attended the information day, as I don’t think I could have worked up the courage to address this situation, or have handled it so professionally, without the guidance I gained. Although I’d been dreading it for weeks, it actually went very well and both my bosses seemed very supportive. One actually approached me yesterday with some research he’d done about how to manage endometriosis- which I thought was quite thoughtful and sweet.

On a side note, Carol Pearson- who led the session, mentioned her TED Talk, which has led to an invitation to speak at a national NHS conference, which is a fantastic opportunity to raise awareness of this condition. As soon as I got home I looked it up and it is so fantastic- I really recommend that you give it a watch. I have also shared it with friends and family, and have been surprised by the positive feedback I have received.

Anyway, I hope this is useful. Where you there too? If so, what did you learn?

Love,

Claire

3 thoughts on “I attended the Endometriosis UK 2014 information day, and this is what I learned.

  1. Pingback: Endometriosis UK information day report 2014 | Endohope

  2. Hi Claire – thanks for writing your update. I really enjoyed reading it I’ve linked to it from my update too, hope you don’t mind.

    Also, I was the lady who asked about diaphragmatic endometriosis 🙂

    Like

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