I’m currently featuring on ‘The Endo Twins’ website.

Last week, I had the awesome experience of being interviewed by Fela of The Endo Twins site about all things endometriosis, adenomyosis, and living well despite chronic illness. This encounter stemmed from our shared experience of living with endometriosis on the diaphragm. You can check the interview out here.

interview-pic
If you have, or suspect that you have diaphragmatic/thoracic endometriosis- please feel free to get in touch through my ‘contact’ page. Also, do check out ‘The Endo Twins’ site as it’s such an interesting read. Thanks again to Fela for featuring me!

With love,
Claire
xxx

Five ‘chronic life’ lessons I learned from walking 23 miles/ 37 kilometers.

Last weekend I walked 23 miles across London, as part of the ‘Mad Pants X London Challenge’, to raise awareness of endometriosis and funds for Endometriosis UK.

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!

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Starting Line. Was so lucky to do this walk with such lovely people. Image credit: Endometriosis UK.

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It rained- a lot! But it didn’t dampen our spirits as much as our tutus. Image credit: Endometriosis UK

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Posing in beautiful London- almost there! Image credit: Endometriosis UK

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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.

Love as always,
Claire
xxx

My blog is nominated for a WEGO Health activism award.

I’ve been nominated for a WEGO Health award, in the blogging category. This was a lovely surprise! I think it’s great that there is an effort to recognise the amazing work that bloggers do to raise awareness of the many chronic and often invisible health conditions out in the world, including endometriosis.

wego-badge

Please take a moment to check out my profile page and to ‘endorse me’ if you like my posts and the work that I do with regards to endometriosis and adenomyosis. It would mean a lot- it’s so great when endosisters can support each other in their efforts!

Thanks, and much love,
Claire
xxx

I am doing the Pink Pants X London Challenge to raise funds for Endometriosis UK.

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.

Just Giving
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!

Love,
Claire
xxx

What is recovery anyway?

It’s been a year now since my excision surgery, where endometriosis was removed from my ovaries, utererosacaral ligaments, bowel, bladder, pouch of douglas, peritoneum, and diaphragm. Lot’s of people have been asking for an update about how I’m doing, and I realise it has been a while since I wrote about my own condition, so I thought I’d write this post to update you all and to share some of my thoughts managing the surgical ‘recovery’ process.

recovery

The road to recovery is a long one. There will be obstacles.

I give so many different responses to the question ”So how are you now?”, depending on who is asking- I’ve realised that not everybody needs or even deserves to hear the truth. The honest answer to this question is this: I’m doing OK. Not fantastic, not terrible.

To clarify, I am certainly MUCH better than I was before my surgery, the difference is remarkable. I now no longer have period pain, which is a huge shock and something I never believed was possible for me, having spent 15 years in agony with every single period. As Mr B and I are trying to conceive, I am off the hormones and painkillers , and am managing well, which would not have been possible a year ago. I am actually enjoying being totally drug free, and am still using holistic and dietary techniques to promote my health, along with exercise, which I am really enjoying. This disease has basically turned my into a hippy. Or Gwyneth Paltrow. I’m OK with that.

On the downside, I’ve still been experiencing chronic fatigue since my surgery, which is with me every day and ranges from mild to debilitating. I do have adenomyosis and some other health problems which are likely playing a part in this though, so I don’t see this as any kind of failing from the surgical process. Slightly alarmingly, I have also been experiencing what I think are random diaphragm and endometrioma related pain flare ups again over the last couple of months, but I am just going to track these for a while before I start to panic or take any action.  Another gloomy point, no baby in sight yet, and I haven’t even had any near misses, and that has been getting me down a little bit too sometimes. I know it’s relatively early days in the process though- so I am staying as optimistic as I can. (Funny story though- I went to London Zoo with Mr B recently, and I cried when I saw a stork. New level of crazy right there!)

So, as ever when living with chronic illnesses, there are pros and cons, to my current situation, but I am looking on the bright side about how much progress I have made. Thinking about how far I have come since my surgery a year ago, I started to understand that recovery from a major laparoscopy for endometriosis and the journey back to health is a long one- much greater than the couple of weeks they advise you to take off work. In my view this journey can be helped or hindered by two key factors, which I’ve outlined in greater detail below.

Managing my own expectations:

chronic illness forever
As we all know, there is no cure for endometriosis. While surgery, hormones, or dietary approaches can be useful on their own or in combination, they will not solve the problem completely.

When I see other people sharing their stories online, and through my own advocacy work, I have noticed that many put all their hopes onto a particular approach ‘fixing’ them, in the sense of making them feel exactly like they did before they got really sick.

This makes me worry that they are setting themselves up for disappointment and failure. I am not immune from this myself, for at least a year after being diagnosed I was desperate to work out how I could get back to being my previous healthy self and carry on as though nothing had happened. Eventually I realised this isn’t feasible, my body has changed and I have changed too much. So I gradually started to alter my mindset to focus on how I can become the best and most healthy version of my my new, chronically ill, self.

I’ve found this new approach so liberating and helpful- and it certainly isn’t defeatist if that’s how you’re reading it. It meant that I went into my surgery with positive hopes that it would lessen my symptoms and improve my quality of life, while also being realistic about what it could really achieve in both the short and long term: So when my recovery was hard, and I’ve had flares up, and my endometrioma came back,  and my diaphragm hurts, it was disappointed for sure, but I wasn’t crushed like I used to be.

This new approach to my thinking has also encouraged me to keep striving for health through diet and exercise etc, rather than feeling demotivated and giving up on myself because things will never be as they once were.

Managing the expectations of others:

get well soon
As well as managing your own expectations about what a treatment or approach can feasibly achieve, I have also realised it is just as important, if not more so, to actively manage the expectations of the people around you. No matter how good I have felt about my progress, it has sometimes only taken a small comment from other people to bring me down and lower my confidence. Examples I have experienced have included:

Family member: It’s disappointing you’re still experiencing some these problems isn’t it?!
Friend: How come you’re still feeling bad- do you need another surgery?
Boss: What do you mean you still have fatigue? I thought you had surgery to sort these things out!

Even though I have told people that endometriosis is a chronic and incurable condition, the fact is most people are much more familiar with acute illnesses that get better with treatment, and they will fall back on these experiences to make sense of what you’ve been going through. I mean, people have surgery to fix them right?!

I think if and when I have another laparoscopy, I will work to reinforce realistic expectations of my friends, family, and colleagues during and after the procedure, to improve their understanding and  to limit these comments. Well informed people makes much better cheer-leaders. When people expect that you’re going to be well, or improved, or cured, it is really very difficult to confide in them that your not, and this can increase feelings of loneliness and isolation. It feels like you’re somehow disappointing them or simply not trying hard enough to get better.

Goal setting to aid recovery:

goals
There were a few months after my surgery when I felt frustrated with my progress (well, my perceived lack of) and felt like I was just drifting aimlessly through life without any vision for myself or support. This was really weird for me as I’ve also been a planner and had a strong sense of where I wanted to be. My self confidence was in tatters, as was with fitness and progress on my PhD.

What has really helped to turn this around has been having specific and realistic goals to work towards with regards to my recovery and general health. Over the past year these goals have included: Working on getting leaner, improving my stamina, working to reduce the inflammation in my body, getting pregnant, and finishing my PhD.

The joy of goals is they can be adapted over time depending on your needs and vision for yourself, and they help to develop your sense of purpose and self worth. Without them, the journey to recovery can feel like a never ending road to nowhere.

I would recommend making some short term goals immediately after surgery for the following weeks, and then introducing long terms ones gradually in the months afterwards. The key to success with such an approach is making sure the goals you set are realistic, and that you can identify the steps you are going to take in order to achieve them.

So what exactly recovery is, and to what extent it is possible, I still don’t really know. It’s certainly more than physical healing from surgery and is an ongoing process requiring lost of thought and practice. Like everyone else, I am just trying to do my best in difficult circumstances, and trying to make positive decisions that are right for me.  If you’re feeling lost, or discouraged, on your road to better health, take heart, and take one day at a time. We will get there in the end.

I hope these thoughts are useful to those of you who have had or will be having endometriosis surgery. I would love to know if you have any other tips for aiding recovery and health! And what goals you have for yourself despite endometriosis/chronic illness.

Love, as always,
Claire
xxx

I featured on ITV’s ‘This Morning’ to discuss period pain and menstrual leave.

I had the exciting opportunity to appear on ITV’s ‘This Morning’ program yesterday as part of a feature about period pain and menstrual leave. I will not stop until the whole world knows about my terrible uterus 🙂 If you are in the UK you can watch the clip back here.

Me at ITV
It was such a fun morning, and everyone at ITV was super welcoming which helped to settle my nerves. I had an excellent time and was really pleased to raise a little bit more awareness about menstrual problems. I know some people were disappointed that the feature wasn’t about endo and/or adeno specifically, but at least with myself as the ‘case study’ the issue was raised, it might not have been otherwise. Hopefully the feature will have been enough to raise some alarm bells for women at home who are experiencing similar symptoms with their periods but haven’t got a diagnosis. We have to celebrate the little wins as well as big ones when it comes to raising awareness.

I’d love to know your thoughts on the feature, as well as your experiences of managing periods while working or of menstrual leave. Have you had to take time off for your periods? Do you think a menstrual leave policy would help?

Love,
Claire
xxx

I have a new endometriosis post in the International Business Times.

I have had a new article published in the International Business Times UK today, about why endometriosis and period pain matter. You can read it here.

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Do you feel like your period pain has held you back in life? Has it prevented you from reaching certain goals? How do you attempt to overcome this challenge? Looking forward to hearing any thoughts you have about this.

Love,
Claire
xxx

Four reasons why I celebrate my endo-versary (and why you should too)!

A modified version of this post first appeared on The Mighty site on 10th August 2016. You can view the original here.

On Saturday I will be celebrating my second endo-versary, exactly two years to the day since I was diagnosed with endometriosis. I’ll be having brunch with some of my lovely endo-sisters and then cracking open a bottle of something sparkling and delicious with my husband in the evening. Chocolate may also be involved.

‘‘Hang on a moment…’’ I hear you cry, ‘‘why would you want to celebrate the day that you found out that you have a debilitating chronic illness that has led you to spend much of the last decade in varying degrees of pain and exhaustion?’’ This is fair question, but hear me out while I try and convince you that endo-versaries are a good thing for your mind and body, and that can help you to manage your endometriosis more effectively over the long term.

Cheers- to me! Another year survived.

Cheers- to me! Another year survived.

  1. It marks your first major win against the disease.

If you don’t know what’s causing your symptoms, it can be difficult to combat and manage them effectively. But for many women, getting a diagnosis of endometriosis is extremely hard. In fact, it takes women in the UK an average of 7.5 years from developing initial symptoms to getting a correct diagnosis- a trend that is mirrored across the globe. I myself was seeking answers for my pelvic pain and fatigue for 14 years and with over 20 doctors before finally gaining a correct diagnosis!

Fighting for my health while being so sick required infinite amounts of patience, determination, and self-belief- more than I ever believed I could possess. My efforts paid off in the end, and while gaining an endometriosis diagnosis has been devastating and life-changing, it has also enabled me to start taking control of my body and turning things around for the better. Who wouldn’t raise a glass (or two) to that?

  1. It offers an opportunity for reflection.

Life with endometriosis, or any chronic illness, can feel like a never ending and unwinnable battle. It can be easy to become discouraged and overly hard on yourself.

Having space for annual reflection can be a really helpful way of gaging how far you have come and what you’ve achieved in spite of being sick. It can also be useful for helping you to figure out what you want to work on or achieve over the coming year. For example, on my first endo-versary I reflected on how my time had been focused on coming to terms with my new diagnosis, and how far I’d come in working through my feelings of fear and grief. And now, approaching my secondary endo-versary I can see how this year has been about accessing and recovering from the surgery I needed to improve my quality of life. Over the next year, I will take on the formidable fertility fight in the hopes of having a baby. Looking back on how far I’ve come gives me a huge sense of achievement on how strong I’ve been, as well as bringing a new determination for the upcoming challenges I’ll face over the coming months.

  1. It opens up an avenue for awareness raising.

If you’re like me, you might limit the amount you post on your personal social media accounts about endometriosis and your own battle with the disease. I used to post a lot more but it was obvious that ‘compassion fatigue’ had set in and that my posts were having little impact. Posting about my endo-versary is a concrete way of revisiting the issue and helping to raise much needed awareness for endometriosis amongst family and friends. This will also help to remind them that I live with this disease 24/7 and that their help and support is much needed and greatly appreciated.

  1. It’s an excuse for some well-deserved pampering.

Like any celebration worth its name, an endo-versary is an excellent opportunity to indulge in a little pampering or ‘me time’- whatever you need most. So crack open the bubbly, or the chocolate, or go to a spa, or to the theatre, or bake cakes to eat with your girlfriends- whatever makes you feel good. You’ve made it through another year despite endometriosis- you’ve earned it!

If you're going to break your Endo-Diet, do it in style I say!

If you’re going to break your Endo-Diet, do it in style I say!

So there you have it. I hope you’re convinced and will start marking your endo-versary in whatever way you see fit, if you don’t already. But if not, that’s OK, but please know this. On the 13th August, as I toast my own successes and the journey to come, I shall raise my glass to you as well- all of you who live with endometriosis every day. You are all so strong and so brave, and without the support of many of you I’d probably be spending this endo-versary hiding under my bed crying. Cheers!

I’d love to hear your thoughts on this. Do you celebrate your endo-versary, and if so, how? Conversely, is it something you could never bring yourself to celebrate?

Love,
Claire
xxx

Living with endometriosis: Why your choice of feminine hygiene products matters for your health.

Do you know what chemicals are in your feminine hygiene products? And do you know why you should care?

If you were like me until very recently, the answer to both of these questions was a resounding ‘NO!’

After being diagnosed with endometriosis and adenomyosis in August 2014, I started reading into the research surrounding the causes and management of these diseases, and discovered a link between their development and exposure to certain chemicals in our environments. For example, a well known study by Rier et al., (1993) found that female rhesus monkeys exposed to dioxins developed endometriosis in a dose dependent relationship- i.e. greater exposure to dioxins led to the development of more endometriosis inside of their bodies.

This made for some scary reading, and I was shocked to discover that our everyday environments are flooded with thousands of harmful chemicals (in the air, in our beauty and household products, and even in our food) which impact negatively on a range of bodily processes. Some of these chemicals (e.g. parabens) are known to be ‘endocrine disruptors’ which directly alter the amount and balance of hormones in the body. Others (e.g. perfluorochemicals) are known to negatively impact on fertility, which is a heightened concern for many of us women endometriosis and/or adenomyosis anyway.

Since endometriosis and adenomyosis are hormone dependent diseases fed by oestrogen, I realised that the amount of endocrine disruptors present in my environment is a pretty big deal and required urgent action. I decided there and then to set about ditching many of my household and beauty products (where possible) in favour of more natural alternatives. As I have written before I also made the switch to a mostly organic diet in order to avoid chemical pesticides entering my system.

Something that I found particularly interesting (actually, horrifying) from my reading is the sheer number of chemicals are lurking in the majority of feminine hygiene products. In brief, these can include:
-Dioxins
-Petrochemicals (i.e. plastics)
-Bleaches
-Fragrances and Dyes
-Pesticides
-GM organisms

It is particularly troubling that these products come into contact with the delicate skin of the vagina and/or vulva, which is a highly vascularised area and therefore a particuarly absorbent platform for chemicals to leech into the body. As Dr Joseph Mercola explains in this informative article in The Huffington Post:

‘Chemicals on your skin may be worse than eating them. At least enzymes in your saliva and stomach help break down and flush chemicals from your body. But when they touch your skin, they’re absorbed straight into your bloodstream, going directly to your delicate organs. Once in your body, they can accumulate because you typically lack the necessary enzymes to break them down.’

Not good news right? With the average women menstruating 450 time during her life, this represents a significant chemical load on the body. My advice would be if you wouldn’t be comfortable pumping a certain chemical directly into your blood, don’t put it anywhere on your body.

One change I made was to seek out a feminine hygiene brand using natural materials. This led me to  Veeda*, a company who make pads, tampons, and liners from organic unbleached cotton,  and are free from any of the chemicals described above. Although keen to be proactive I was slightly anxious about making the switch, like many other women I had used Always products since puberty and did feel some brand loyalty to them. You can check out these links for their UK website and US website here.

For a great demonstration of the difference in chemical load between synthetic and natural sanitary pads I recommend watching this video:

Veeda were kind enough to send me a sample of their products to try out, and I was pleasantly surprised with how good they are. I found their pads and liners of comparable comfort, quality, absorbancy, and price to the synthetic market leaders. When I last bought them in Boots they were actually cheaper than my usual choice from Always! I’m pleased that such a simple swap can promote my health in such a positive way, without having to compromise on quality. I’m converted for life.

veeda pic

What I also admire about Veeda is that they seem to be a socially aware company seeking to promote women’s health and rights. I often see them tweeting for endometriosis awareness, and they have established a charity for disadvantaged women and children around the world which they donate 10% of their profits too. This contrasts with Proctor & Gamble (who own the Always and Tampax brands) who have systematically refused calls to disclose precisely which chemicals they use in their feminine hygiene products or to remove any substances known to directly damage health.

I personally know which company I would rather support. The excellent Chem Fatale Report on this topic also highlights the irony that while these products are marketed to women as essential for ensuring ‘good health, sexuality, and fertility’, in reality they are likely to do the opposite. As women, we have the power to influence big companies through our consumer choices. If we collectively and consistently endorse non-harmful products through our purchases, companies will be forced to listen and then more likely to develop and sell more natural products.

It’s important that I add that other natural feminine hygiene products outside of Veeda’s range are likely to be available where you live, so please do your own research and shop around to see what works best for you!  You may decide to use The Diva Cup as a natural and environmentally friendly alternative. I’m intrigued by the idea, but I don’t feel that is an option for me personally as I have very heavy bleeding with my cycles (thank you adenomyosis) and find insertion painful (thank you endometriosis), which is also why I don’t tend to use tampons. But hey- each to their own 🙂

Making the switch to more natural feminine hygiene products makes sense for any woman, regardless of whether you have a disease like endometriosis or adenomyosis. The chemicals in bleached tampons have been directly linked to the development of Toxic Shock Syndrome which can be fatal, as well as being linked to a number of cancers and birth defects.

So come on ladies, it’s time to make the switch to promote your long-term health and wellbeing. This one is a no-brainer surely?! I did notice that the issue of reducing the chemical load on our bodies was explored in the fabulous Endo What? documentary, so I would recommend checking the film out if you’d like to know more.

I’d love to hear your thought on this issue. Would you consider switching your femine hygiene products, or does brand loyalty override this decision for you? Do you already use a natural alternative- and if so what?

Love,
Claire
xx

*Veeda have not paid or incentivised me to write this review- I just genuinely like their products.

Adenomyosis: A one way ticket to hysterectomy?

Did you know that April is Adenomyosis awareness month?

april adenomyosis awareness

I was diagnosed with this disease in August 2014, on the same day that I was also diagnosed with endometriosis. It really wasn’t my greatest day- but it did explain rather a lot. Like many people I had never even heard of adenomyosis before, so I was very taken aback to find out that I have it. Adeno-what?! When I wanted to learn more about this mystery illness that had been wrecking havoc on my insides, a quick internet search revealed (rather depressingly) that adenomyosis a) is the lesser understood evil cousin of endometriosis (and that is certainly saying something!), and b) is a leading cause of hysterectomy.

This hysterectomy factoid really bothered me from the start. It may be some form of Stockholm Syndrome, but I am really attached to all my lady parts and am not keen to loose them. However, reading about the experiences of other women with the disease on internet forums made me feel like having a hysterectomy is an inevitable part of my future. They describe the disease growing stronger until it takes over your life. Now don’t get me wrong, I want all women to feel empowered to make the choices that are right for them, and if a hysterectomy is going to relieve suffering then that’s great. But for a long time I lived in a state of panic, like my uterus is a ticking time-bomb waiting to explode. I  tell myself that those joining support forums or having hysterectomies are those who have been worse affected by the disease, and may not be representative of the majority of women with adenomyosis.

I’ve gotten bored of living in fear and feeling that I have no control over what is happening to my body. I have written this post to answer some of the questions I am frequently asked about my experiences with adenomyosis, to try and figure out what may be waiting for me in the future, and to help raise awareness for this often debilitating much overlooked disease.

What is adenomyosis?

Adenomyosis is a benign chronic disease where the lining of the uterus (endometrium) grows into the muscle layer of the uterus (myometrium). This can happen diffusely throughout the uterus-appearing as little specks, or can lead to the formation of larger growths called adenomyomas.

adenomyosis

What does adenomyosis feel like?
Having endometriosis in addition to adenomyosis, I used to find it difficult to determine precisely which symptoms were caused by each disease. Since having my endometriosis surgically excised I believe I now have a much clearer understanding of the effects that adenomyosis has on my body. It’s important to note though that each person experiences of disease is unique- how adenomyosis affects me may be completely different for somebody else.

For me, adenomyosis feels like a red hot poker is being slowly stabbed into my uterus over and over again. This used to only happen during my period, but now it strikes any time in my cycle. It’s basically uterus Armageddon. The disease also leads to a dull but intense aching sensation which radiates to my lower back and thighs. Like many women with the disease I also experience heavy periods with the presence of many clots, some of which are very large. I once had a clot the size of an egg- it was horrifying. I’ve tracked my periods since puberty and they have certainly become progressively heavier and more painful over the years.

A myriad of other symptoms have also been associated with adenomyosis. I have certainly experienced many of them to greater of lesser degrees, such as fatigue, aching joints, bloating, and a general feeling of malaise. Adenomyosis can also compromise bowel and bladder function, lead to anemia (from the prolonged heavy bleeding), and has been tentatively linked to depression. It’s effect on fertility is currently unclear as there has been little research on the subject, and the work that has been done is often confounded by the women also having a diagnosis of endometriosis. However, the general feeling appears to be that adenomyosis can negatively impact upon fertility outcomes, we just aren’t clear precisely why or how this is.

Over time adenomyosis can also cause the uterus to grow, and it can become extremely enlarged. This leads to severe abdominal swelling, making the it appear as though the woman is pregnant. I’ve had strangers ask me if I’m pregnant. It’s really upsetting, especially if you’re worrying about your fertility anyway.

Yeah..pretty much this.

Yeah..pretty much this.

Who gets adenomyosis?
If you read any published source on this disease it is likely to tell you that it primarily affects women in their late thirties and forties who have had multiple children. However, evidence is increasingly emerging that younger women can be affected by the disease, even young teenagers. Explore any online forum for adenomyosis and there are many women in their early twenties affected. I’m affected, I was diagnosed at 26 at it had clearly been going on inside me for quite a while.

It is likely that this age bias in the scientific literature stems from the fact diagnosis often relies on hysterectomy, and that women in their forties who have completed child bearing are more likely to take this option/ or be granted permission to take this option by their doctors.

My take home message here is that anybody with a uterus could have adenomyosis. If you have concerns about this based on your symptoms speak to your GP and request a referral to a gynecologist.

How is adenomyosis diagnosed?
I was initially diagnosed with adenomyosis during a laparoscopy in August 2014. After I woke from the anesthetic, my surgeon spent a long time detailing the numerous organs my endometriosis had damaged, and then ended her soliloquy with ”and you have a lumpy uterus”. No further explanation was provided and the term ‘adenomyosis’ itself was not mentioned, which really annoys me.

Fast forward six months and I am mid way through a trans-vaginal ultrasound at an endometriosis specialist center when the doctor says ”…and you have adenomyosis”. She said this so casually, like it was nothing. I’d pretty much worked this out from my own research following the whole ”lumpy uterus” comment, but it was still a huge blow and I cried my eyes out totally melodramatically for the rest of the day.

A historical reason why adenomyosis has been difficult to overlook is that is required examination of the uterus post-hysterectomy for a definitive diagnosis to be made. However, progress with scanning technologies, particularly MRI, means that adenomyosis is increasingly being diagnosed  without the need for hysterectomy, and can be accurately distinguished from similar conditions such as fibroids or leiomyoma.

Obligatory stock photo of a woman with period pain.

Obligatory ridiculous stock photo of a woman with period pain. She isn’t swearing and crying?!

Is there a cure?
A hysterectomy will cure adenomyosis. Since it only affects the tissue within the uterus, removing this organ solves the problem.

It’s clearly great that we do technically have a cure, unlike endometriosis which has none. However, hysterectomy clearly isn’t ideal and a better solution is required which doesn’t take such a huge physical toll on the body or cause infertility. I am still hoping to have children soon, so ripping out my uterus really isn’t an option right now. Since I can’t use hormones (such as the pill or mirena coil) which can be used to help manage adenomyosis, I am effectively forced live with symptoms for the foreseeable future.

Getting worse each month. Image credit: The Wondering Womb

Getting worse each month.
Image credit: The Wondering Womb

What other treatment options are available?
Before taking the plunge and opting for a hysterectomy, there are alternatives you can try- that’s the good news. The bad news is most have limited success rates and lack rigorous scientific evaluation. Unfortunately, these techniques are also rarely recommend for women who still wish to conceive in the future, as they risk causing damage to the uterus. I have very briefly summarized some of the most commonly used options below. For more information check out the links here and here.

Endometrial ablation:  A procedure that destroys or removes the uterus lining (the endometrium). This prevents any further bleeding (or bleeding is reduced to light spotting) in the hope of preventing further progression of adenomyosis over time. This procedure is offered to women seeking to avoid hysterectomy, but is clearly not an option for women seeking to preserve their fertility.

Myometrial/ adenomyoma excision: If the location of the adenomyosis can be determined through scanning on MRI or ultrasound etc, then it is possible for the diseased tissue to be surgically cut out (excised). This technique is only possible if the adenomyosis has not spread to a high proportion of the uterus. Due to difficulties with defining the margins of the adenomyosis the success rate of this procedure is currently estimated to be less than 50%.

Myometrial electrocoagulation: This procedure has the ability to shrink  adenomyosis deposits within the myometrium. It is carried out during a laparoscopic surgery, and using electrical current in the form of heat to destroy the adenomyosis deposits. However, this procedure is deemed less effective overall than excision owing to the fact that it is difficult to determine when the current has completed it’s work, risking diseased tissue being left behind.

Magenetic resonance-guided focused ultrasound: This is similar to myometrial electrocoagulation, using heat to destroy adenomyosis tissue. However, it has the additional advantage of being more greatly focused so that less damaged occurs to healthy surrounding tissue. However, this treatment approach is fairly new for use with people who have adenomyosis, and further research is required to ascertain its full impact.

What treatments have I tried?
I was taking the oral contraceptive pill for 8 of the last 10 years. It certainly helped to suppress many of my symptoms, although the disease was still spreading inside of me. I am not currently taking any medication or undergoing treatment as I am trying to conceive. As a consequence I often worry that my adenomyosis is getting worse with each period.

Why are you so annoyed about this?
On a personal level I am so and upset that I have to battle with another disease (on top on my endometriosis, chronic fatigue, and depression) to contend with. It just seems so unfair, but I know that’s how life is sometimes, so I’m trying to deal with it as best I can. As with my endometriosis, I am constantly frustrated that nobody has heard of adenomyosis- which basically means you get zero sympathy. Not that I really care about sympathy, but feeling understood and supported makes such a difference to living well with any chronic condition.

The lack of awareness has a more significant and darker impact than on just myself and is so damaging to women everywhere; it means there is limited research funding, no charity to advocate for us (at least this is so in the UK), and treatment options that come with extreme side effects and/or impact on the body. When you Google adenomyosis, speak to your GP about it, or delve into the research literature you basically get this response:

doctor shrug 2

The unanswered questions about this disease are fundamental and numerous.

This simply isn’t good enough. I even had to explain to my GP what adenomyosis is! I mentioned to a fellow endo sister that I have it and she replied with the perfect and sensitive comment: ”I am so sorry.” Not ”What’s that?” or ”I think my cousins sisters aunts daughter had that!”, or a <silence, blank expression>. Her response actually took me by surprise, and I realised it’s because I have never really received any compassion since my diagnosis, nor given any to myself.  Most of my family and friends can’t even pronounce adenomyosis. Seriously- if you want to support your loved ones and at least appear interested LEARN TO PRONOUNCE THEIR DISEASE please people!

We deserve so much better than this state of affairs. There are so many of us fighting adenomyosis on a daily basis in relative silence. We will continue to do so, and if I am brutally honest at times it’s pretty difficult to hope that things will be better for us any time soon. April is Adenomyosis awareness month, and I am finally ready to start speaking up. Are you?

Where can I find out more?
These resources have all proved useful to me for researching about this condition.
Review article by Taran, Stweart, & Brucker (2013)
Endopeadia
The Endo Patients Survival Guide
Adenomyosis Advice Association
Adenomyosis Fighters

So that’s my adenomyosis story. It isn’t pretty, and I’m not sure if a happy ending is on the horizon. Maybe a hysterectomy will be a part of my future, but maybe it won’t. Until then, I plan to keep fighting and making the decisions that are best for my body and mental wellbeing. I would love to hear about your experiences and thoughts on this disease. What symptoms do you have? What treatments have you tried? And, what have you accomplished in spite of this disease?

Love,
Claire
xx