A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.
Image credit: Endometriosis UK
I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.
1- Find and build your tribe. Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information and advice. You can start building your tribe through local support group or online support groups.
2- Specialist nurses can be a valuable asset in your journey. If you are being treated in a BSGE centre for endometriosis, there will be a specialist endometriosis nurse at the hospital whose role it is to support you and to advocate on your behalf. These nurses have a wealth of knowledge and experience about living well with endometriosis, and also have more time available than consultants to discuss your history, goals, and treatment options. If you are being treated at a BSGE centre, but aren’t offered an appointment with a specialist nurse raise this with your medical team.
3- You are the CEO of your body. When you have a debilitating disease like endometriosis it can be easy to feel that you lack control over your body. However, we can exercise a lot of control over many of the factors that influence pain; such as sleep, diet, exercise, and stress. Take ownership of your body one step at a time and you are likely to start feeling positive effects. The Pain Toolkit can be a really useful starting point for this. As can keeping a pain diary.
4- Exercise is your friend. It can be very gentle and take place at home. Start small and build up, but regular movement promotes general health and can help to reduce pain thanks to endorphins. Many women at the event shared their experiences and the consensus seemed to be around yoga, swimming, and pilates as particularly helpful.
5- Endometriosis is a highly individual disease. There are no quick fixes or easy answers. What works some for some people won’t work for you, and vice versa. Don’t get discouraged. Take time to get to know your own body, and think through what matters to you before deciding on a treatment strategy.
6- If you don’t ask, you don’t get. Whether it be a specialist endometriosis nurse or a referral to a pain management team, you’re often only likely to be offered services when you have directly asked for them. Do your research about what services are available, and make sure you advocate for yourself. Services are out there to be utilised.
7- Progress is being made to improve the patient journey…. During the Information Day the presenters discussed the new NICE guidelines for endometriosis which will soon come into force and will hopefully positively influence patient care. Other initiatives aimed at improving research funding for the disease were also raised. This is all really positive progress and shows that endometriosis awareness is continuing to grow. This can only have a positive impact on us as a patient community.
8- …But conversely, lots of the old myths still exist! Lots of the ladies present at the Information Day said they had been advised by their doctors to have a baby or hysterectomy as a cure for endometriosis. The debate about the benefits of excision vs ablation surgery was also discussed. The take home message- see the most experienced doctor you can and view all information provided with a critical eye. You are the CEO of your own body after all, don’t do anything you’re uncomfortable with.
9- Endometriosis is a life changing illness. Don’t let anybody undermine your experience or tell you otherwise. Yes it’s not cancer, and no it’s not likely to kill you, but it’s still a pretty big deal.
10- There is hope. There were lots of women with endometriosis at the Information Day who have been diagnosed with endometriosis for a very long time, and who had learned to thrive despite the awful experiences they had endured. Carol Pearson gave a particularly inspiring speech which reiterated that sometimes you don’t ended up living the life you would have planned for yourself, but that life can be one hell of adventure anyway. Oh, and she also reminded us to keep shouting loudly about endometriosis whenever you can. Change can and will happen for endometriosis, and we have such power to bring that about from within our community.
I hope this was useful. Sometimes it’s good just to reinforce the important tools that we know, as knowing and doing can be two separate things! I’d also love to hear your single top tip for living well with endometriosis!
I’m happy to report that I managed to complete the walk! It took approximately 9 hours, 48,000 steps, 4 quinoa energy bars, 1 bottle of Lucozade, and a Wagamama pit stop to make it to the finish line. We (myself, and my Hertfordshire teammates Rosie and Jessica) managed to fund-raise £1515.24 for the charity (including gift aid), which was completely amazing and so much more than we were expecting. Knowing that we had so much sponsorship really helped to spur us on during some of the more difficult parts of the walk- especially during the heavy rain!
Finished! Total champions- bring on the wine! Image credit: EndoLadyUK.
It was a fantastic but challenging day, and I feel it was a huge achievement considering that I (and many of the other women on the walk) live with regular and/or constant pain and fatigue. I knew it would be tough but figured it would probably pale in comparison to the physical and mental torture that endo has inflected upon myself and so many others. Upon reflection, the event has reinforced number of important lessons about living well with a chronic illness to me, which I have outlined below:
1.It’s totally OK to push yourself sometimes. Walking 23 miles/37 kilometers in one go is pretty extreme. I knew that participating in this challenge would cause a massive fatigue flareup over the following week, and would make my pain worse than usual, but to be honest I didn’t care. While I’ve gotten really good at looking after myself and protecting my body from endo symptoms, I REALLY miss being the old adventurous and athletic me sometimes. I was ready for an adventure and to push my limits for a change, so I went for it regardless if the inevitable dire consequences. The massive sense of achievement and boost for my self esteem was totally worth a difficult week of recovery. Life is for living to the fullest after all, chronic illness or not.
2.But equally, you have to know your limits and work within them. These days it is fatigue more than pain that is a problem for me, which clearly poses a challenge when doing a long walk. Rather than letting this *minor detail* put me off I knew that I had to work within the limits of my body rather than ignoring them by putting a number of strategies into place. These included doing lots of training walks to gradually increase my stamina, and making sure that we had no plans scheduled for the next day etc. While we all know the importance of being proactive and pacing for navigating chronic life successfully, it felt good to have such a powerful reminder of how effective such strategies can be for helping you to reach specific goals, rather than simply being something that holds you back from participating in life.
3.The support and kindness of others can lift you up to achieve great things. The cruelty of life with chronic illness(es), especially ones like endometriosis and adenomyosis which are so variable in their pathology and symptoms, is that it can make you feel totally alone. With this walk, I was honestly surprised how much my friends, family, endo-sisters, and even strangers got behind us, because I honestly felt like most people in my life don’t understand or care what I go through on a daily basis. I was amazing the effect that people’s encouragement had on me, as I have grown used to primarily being my own cheerleader these days. It has also reminded me of the importance of getting behind my fellow endo-sisters/ spoonies in their endeavors, rather than just focusing on my own troubles. Together, we can overcome our illnesses and achieve great things.
4.It’s OK to say no. I had wanted to do the walk for the two years prior to actually signing up, but I was much sicker then as I hadn’t had my surgery and knew I’d never have managed it. I’m certainly not suggesting that my completing the walk was a simple case of mind-over-matter, I knew I had to wait until the timing was right. When you’re chronically ill, you have to put your health first much of the time in order to survive, and I knew that could mean pulling out of the race either shortly beforehand or during the day itself. And that would have been OK. Pre-chronic life I’d never have considered quitting anything even if it meant death, but the rules have changed now. It’s totally OK to say no, our health is more important than charity, the expectations of others, and even our own pride.
5.Live life as you see fit, not as others see fit for you. When I told most of my friends and family that I’d signed up to the walk, they almost universally thought it was a bad idea. My husband, who is forever supportive of every decision I make, was immediately dead set against it and told me outright that I was making a huge mistake, was endangering my health, and was unlikely to reach the finish line. Ouch! (Proved him very wrong though and am trying SO HARD not to rub it in his face!) I totally understood their reasoning of course- 23 miles is a long way to walk for people in good health, never mind for those who are chronically ill. I have to admit that I appreciated their concerns and shared some of their doubts about my walking abilities too. But I also knew that I know my body and abilities the best, and there was a voice inside my head telling me that I could, and would, succeed. If I’d have listened to everyone else I would have dropped out, or never signed up to begin with, and would therefore have missed out on a wonderful day and making a huge accomplishment. My point is, set your own goals for life depending on what you know your abilities to be, and don’t be swayed by people telling you that you can’t do things because you’re sick. Yeah, there are some things that are now out of your grasp, but lots of things aren’t. Now get out there and do them!
Thank you to everyone who supported us on our epic walk; through publicizing our fundraising page, sponsoring us, and in your kind works of support. I’d love to hear your thoughts about this, or if you’ve learned anything from doing extreme challenges for charity sponsorship yourself.
Through a possibly misguided combination of enthusiasm and insanity, on the 1st October I (along with two lovely friends my my local support group) will be walking 23 miles/ 37 kilometers across London for the Pink Pants X London Challenge to raise awareness of endometriosis and some funds for Endometriosis UK.
I’m slightly worried about how epic this challenge will be. As my husband put it: ”So, thee girls with chronic fatigue are going to walk 23 miles? OK then!” But I am determined to do it, and nothing stops me when I have made up my mind about something.
Endometriosis UK are an incredible charity, and they have given so much life changing support to me and other women with the disease. Between us, without the information and support that Endometriosis UK have provided me with since my diagnosis, I am not totally sure I’d still be here today. Their work inspired me to become one of their volunteer advocates, so I can help other women facing the many challenges that this disease can bring.
If you like this blog or have used Endometriosis UK services yourself I’m really hoping you might be able to donate to our fundraising page, to help us to meet our target! I would really appreciate anything you might be able to spare for this great cause. You can donate if you’re outside of the UK too.
Thanks for your support! If you want to follow us on Twitter the 1st October you can do so by using the hashtag #GoTeamHerts. If any of you have tips for walking such a long distance, I would love to hear them!
Exciting news update- I’m now trained as a volunteer advocate for Endometriosis UK! 🙂 This means that I will be helping women with endometriosis in England to address some of the difficulties they are experiencing as a consequence of living with the disease. Advocacy support could relate to anything from accessing healthcare services and employment disputes to exploring coping mechanisms for the development of better mental health. You can find out more about the Endometriosis UK Advocacy Support here.
I’m feeling really grateful for this opportunity, and will give as much as I can to the role to help women with endometriosis lead as pain free and fulfilling lives as possible. We all know that having endometriosis (or any chronic illness for that matter) can be so soul-destroying and isolating at times, and can impact on every aspect of life. From reading this blog you may know that my own story with endometriosis has deeply affected my mental health, working life, body image, and friendships- and I know that my story is probably your story too.
Six months post surgery: Feeling good and ready to kick endo-butt!
Now I am feeling much better physically post-surgery (I haven’t take a single pain killer in 5 months- I used to take 8 a day for 4 years!), I felt it was time to step up my fight against this disease with some positive action. Mighty Endo-Lady lives on! I’m a big fan of charity volunteering anyway and also currently volunteer for Age UK as a befriender. I know how much I could have benefited from an advocacy service in the past, and hope the women who are lucky enough to use it find it informative and useful.
I’m always keen to hear about your experiences of programs and projects in your own communities which work to support women with endometriosis- either as a service user or volunteer. If we keep working toegther we can make a difference to people’s lives and create greater awareness of this awful condition.
This weekend marked the end of Endometriosis Awareness Month, and the occasion was marked by the the Worldwide Endo March 2015. The aim of this march was to have a million people from all over the world walk through their local big cities to raise awareness for this awful disease. We ladies with endometriosis suffer far too silently far too often, so I was very excited about being able to get our voices out into the world as loudly as possible.
I really enjoyed attending the British march, which took place in London from Embankment to Trafalgar Square. I was there with some of the lovely people from my local support group (which is run by Endometriosis UK), and it was so lovely to catchup with them and have some friendly faces around for support. One friend had been much more organised than me and had spare posters and leaflets for us to use, which was a nice touch. Even the predictably cold and grey English weather couldn’t dampen our spirits. On the walk, lots of passers by seemed interested, so we had lots of opportunities to talk about endometriosis with people and raise awareness! 🙂 It felt so good to be taking some positive action rather than focusing on the negative aspects of life with endometriosis.
It was actually quite an emotional day (although I managed not to cry- I’m getting better at that!), and I’m still feeling physically and mentally drained. When I got home I reflected on how much it meant for me to be there. The ways things are at the moment for women with endometriosis just isn’t good enough because:
it’s NOT OK to live a life in constant pain and exhaustion.
it’s NOT OK to wait 7.5 years (on average) to get a diagnosis.
it’s NOT OK that we have limited treatment options and no cure.
it’s NOT OK to experience infertility.
it’s NOT OK how little awareness there is in the medical community and general public.
Speaking to other women on the day, I was again reminded how my own (slightly terrible and traumatic) story mirrors that of many other women’s when it comes to endometriosis. That just can’t be allowed to continue- it’s utter madness. I was slightly disappointed that more people didn’t attend our event, considering an estimated 1.5 million women have endometriosis in the UK, but I do appreciate that many are too unwell, live far away, or just aren’t activism inclined. Still, I do think the endometriosis movement is gaining some momentum globally, so I hope we can all keep up our efforts and improve things one step at a time. Just because awareness month has ended I certainly won’t give up on trying to make a difference on this issue.
I’d love to hear if you attended an Endo March! If you did, how did it go?Do send any thoughts, inspiration stories, or hilarious incidents my way! Are you feeling pretty badass right now- because I am! 🙂
For two hours yesterday morning I took part in a bucket collection at Angel tube station in London to raise money for Endometriosis UK, alongside a fellow member of the Hertfordshire support group. Since being diagnosed in the summer the charity has helped me in so many ways; from publishing accurate information about the disease to help me make sense of what has been happening to my body, to providing the local support group I attend, which has been such a vital emotional support during this challenging time. Signing up was also an excellent excuse to go into London and do some Christmas shopping- everyone wins!
Despite the icy gusts of wind that made their way through the station every couple of minutes, I had a really good time- I would definitely recommend signing up to similar events for anyone interested in supporting the charity. I was amazed at how many people shared their personal stories (or those of their loved ones) about endometriosis with me, and asked me to share mine with them. It was really interesting and touching. A couple of people also asked me about what endometriosis is, so I had the opportunity to do some awareness raising too which was really satisfying. I suggested to these people research the condition for themselves, and then tell two other people about it. It would be so good if even one person did this.
Working hard! Source: Endometriosis UK.
If you weren’t able to come and see us yesterday, you can still donate to Endometriosis UK here– it is the season of giving and good will after all! 😀
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?