Wednesday, 27 December 2017

Rheum update

Image courtesy of http://bit.ly/2zcrsQE

If you were following my personal Instagram (@thatgrrlshireen) back in November, then you might have already seen that I had a little rant about my latest rheumatology appointment.

I'd been waiting a year for this appointment and after my last appointment went so well (as well as previous appointments with the same doctor), I didn't think this one would be any different. But, it was. So much so, I ended up crying with frustration afterwards.

I saw my rheumatologist on 3rd November. His clinic was running on time and wasn't particularly busy (just trying to set the scene and reason his actions)... My notes from my appointment last year weren't in my file either which didn't help matters. 

First and foremost, my 'borderline osteoporosis' is now back in to osteopenia levels. I'm starting to understand that the 'borderline osteoporosis' term might just be something my hospital has come up with as I can't find anything online about it, only that it's either osteopenia or osteoporosis - nothing in between. But either way, it's an improvement which is great news. He said something about it being within the 2% they allow for errors with the DEXA machine but I didn't really understand all that. I've listed the T-scores I have a bit further down. However, last year he spoke about starting medication if my bone scores did get worse by this scan but this time he completely back tracked and said he wouldn't want me on anything until I'm in my 40's now. 

He was really helpful with the pain in my left hip last time around and had diagnosed it as 'trochanteric bursitis'. I had hoped he would help with the pain in my right hip which has flared badly in the last year. Unfortunately, he wasn't interested in discussing that.

I also mentioned how the pain in my knees is so bad someday's that I can't walk. I don't think he even responded.

I had hoped to discuss my fibromyalgia more with him since I'm feeling so lost with it - especially after the lupus type rashes that took me to the doctors earlier this year. But after a short while, he cut me short and said he wasn't interested in discussing that!

I did, however, manage to get in that I can tell what pains are now due to my endometriosis (things were still very unsettled last time I saw him as my endometriosis pains were only gradually coming back still after having Hunter) and what is separate to that. For example, I told him that the pain in my shoulders is because of my diaphragmatic endometriosis, and that pain travels down my arms. And any pain in my legs is also endometriosis as it radiates downwards. The pain that is separate to my endometriosis is very much in my hands, knees and occasionally my feet. And I do get full body aches but I think I get that more when I'm very fatigued. Which I do get, majorly. But, anyway... When I mentioned about the pain in my shoulder being due to my endometriosis, he looked confused and asked why that would be. So I explained about the nerve that travels up to that area and how it's the same as with an ectopic pregnancy, which seemed to be new information to him. He then asked why the pain in my hands couldn't be endometriosis. I kind of nervously laughed and said "well... because you can't get endometriosis in your hands!?". He explained the same nerve runs down to my hands and so now he thinks that's all down to my endometriosis! I mean, I don't even know what to think about that! I've never heard of endometriosis causing pain in your hands and causing you to lose grip but... It's something to mention to my endometriosis consultant in January!

So, then he discharged me. No DEXA scans for 3 years and I'm only having one then because I quickly managed to get in about having the implant and I know before he's said that I need periods for my bone health. Otherwise, I wouldn't have been discharged with no further checks.

A letter detailing the appointment arrived early December and that was completely wrong too. For starters, it said that the 20mg Amitriptyline I take each day has helped. I had explained to my rheumatologist that it had helped but I was in so much pain still and some days could barely walk. The letter also states "Interestingly she is able to correlate her symptoms in her shoulders and arms with her endometriosis on the basis that she has been told that she has endometriosis of the diaphragm" - which is true. However, he's writing it in the sense that it explains the pain in my hands and wrists - which certainly does not correlate with my endometriosis pains. It also stated that the Nexplanon implant "can have an adverse effect on bone mineral density" because it "inhibits the action of progesterone" - whereas my doctor tells me it doesn't inhibit progesterone because it is progesterone and it doesn't have any effect on bone density!

I don't have my last set of T-scores or the full set from my most recent scan but the following is a run down of where I'm at now:

Osteopenia is diagnosed when the T score on a Bone Densitometry (DXA) Scan result is between -1.0 and -2.5 (as per criteria set by the World Health Organisation (WHO).

14/07/2009 DEXA scan results:

AP SPINE RESULTS:
Region L1-L4                T-score -0.8 (Normal)

FEMUR RESULTS:
Region Neck Left          T-score -1.0 (Normal)
Region Neck Right        T-score -1.2 (Osteopenia)
Region Total Left          T-score -0.5 (Normal)
Region Total Right        T-score -0.2 (Normal)


20/01/2012 DEXA scan results:

AP SPINE RESULTS:
Region L1-L4                T-score -0.6 (Normal)


FEMUR RESULTS:
Region Neck Left          T-score -1.2 (Osteopenia)
Region Neck Right        T-score -1.1 (Osteopenia)
Region Total Left          T-score -0.3 (Normal)
Region Total Right        T-score -0.1 (Normal)


03/11/2017 DEXA scan results:

AP SPINE RESULTS:
Region L1-L4                T-score -0.6 (Normal)

FEMUR RESULTS:
Region Neck Right        T-score -1.9 (Osteopenia)
(4% improvement on 2 years ago)

I saw my own doctor on 14th December and mentioned the appointment to her which she knew nothing about because they hadn't copied her in on the letter and she was shaking her head about it. She's now referring me on to a new rheumatologist which I'm really pleased about. I'm not expecting new results or anything but just a little bit of care and understanding wouldn't go amiss.

S.
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Friday, 22 December 2017

Nexplanon implant: 4 months in


Since my last update, there has been a little change... I actually stopped bleeding. At last! I had been bleeding since mid-September and in the last week of my first pack of Desogestrel (which I'm taking alongside my implant), it stopped!... But, it lasted all of a week and then I started spotting again.

What was more annoying though is that my pain levels while on the pill and bleeding were much better, but then I started getting really bad pains when I wasn't bleeding. And the pain has eased since I started spotting again... My body is so awkward!!

I saw my doctor last week and she thinks it's best to continue as I am (carrying on with the pill) as I see my consultant at the beginning of January so it's not long to wait. I think she's a bit flummoxed by it all to be honest. She said she wants me to make it clear to my consultant that I need a plan of action because my doctor can't provide any further primary care for me and she doesn't want me to go in and tell her everything is working and then be left as I am for however long it is until my next appointment. She thinks I've given the implant a good go now but she did also say that she doesn't think anything else is going to work until I'm menopausal. So, that wasn't great to hear. Even though I know it's the truth.

I guess I'm no further with anything really but, it's only a few weeks until I see Miss Potdar so, fingers crossed, she'll have some suggestions... Who knows!

S.
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Wednesday, 20 December 2017

My story: Carla Cressy

Myself and Sir David Amess MP at 1 Parliament Street presenting my Endometriosis Awareness Campaign
I have personally been affected by endometriosis so severely that it has almost cost me my life.

Aged fourteen, my periods were extremely irregular and were occurring every two weeks. I trialled many hormonal pills, however, they never helped regulate my cycle and over time my periods become more and more painful resulting in severe blood loss. It became debilitating. I spent my school years taking days off having numerous scans on many occasions. As time went on, unfortunately, there was no explanation or answers to why my periods were so irregular.

As a former child model, at 18 I was approached by a well known glamour company and modelled lingerie and fashion for many magazines and catalogues.

Frustrated with endless blood loss, pain and feeling unwell further into my teenage years, my cycle continued with no relief. There have been times I’ve had to call into work to take days off, as well as cancelling modelling jobs and even travel trips. Knowing there was something wrong and being told it’s normal left me feeling physically and emotionally drained. I even asked on four occasions for a smear test to put my mind at rest that it wasn’t cancer, however I was refused because of my age.

This condition has had a huge impact on my previous relationships. I have been extremely hormonal causing me to be irrational. The constant bleeding has affected my intimacy as well as my well being. The affects of this condition have caused me to feel insecure, resulting in low self esteem.

In September 2015 until January 2016 I was admitted to A&E several times a week for severe pain, resulting in unconsciousness, vomiting and unable to pass stools. Once again I was given a scan and told I had irritable bowel syndrome (IBS) and sent home with pain relief and laxatives. Struggling to eat with absolutely no appetite I was advised to control my pain with 8 x codeine tablets along with laxatives, however, the effects from codeine causing constipation made my condition worse. During this time I lost my job as I was found on two occasions unconscious.

Feeling fed up of being told to take pain relief without a real diagnosis, I took myself to a different hospital where I collapsed in the car park and wet myself. Even worse I was wearing a pig onesie with a curly tail! I was rushed into A&E, screaming in pain. Once again, more scans identifying both endometriosis chocolate and kissing cysts, some attaching my bowel to organs. The doctor said the words “You have endometriosis”. The satisfaction of finally being given a diagnosis was relieving. However, the soonest they could perform surgery was June, meaning I had to wait another 6 months.

From January to June I panicked as I had no job. I completed three courses in beauty where I worked from home and carried out treatments when I had my good days, although I still performed treatments with hot water bottles strapped around my back and regular trips to the toilet to vomit. Some days, I had three baths in one day. I found heat helped a lot for the pain I had in my stomach, back and legs.

June 2016, I finally had surgery. They inserted the Mirena coil in a bid to lessen the symptoms and stop the bleeding of endometriosis as I was made aware it had been identified in other areas, there was no cure and it could return in future, however, this coil will help keep it under control and lessen the symptoms. After recovery I returned to my beauty and carried on with my treatments.

January 3rd 2017, I had this sudden onset with pain. My stomach was rock hard and the pain was worse than ever before. I was taken by ambulance to hospital where I was advised I had gastroenteritis and sent home with pain relief. I was unable to sleep and curled into a ball on the floor. By the morning I went to see my GP, barely able to walk, who sent me via emergency to the hospital with suspected appendicitis.

From January 3rd onwards, for seventeen days I spent in the hospital, my blood results showed abnormally high inflammation and infection markers. I was rushed into theatre where I underwent two major surgeries, a week apart. One to remove my appendix which proved still to be intact, stating it wasn’t the cause.

After the first surgery I then suffered with Post Ileus Syndrome, where my bowel went to sleep, resulting in a tube being inserted up my nose and down my throat, and my stomach content required syringing through my nose. Rather than recovering, my stomach began to swell and blew up so big I looked pregnant. Again I was rushed back into theatre. I filled with what was described as chocolate milkshake fluid from the endometriosis cysts that had burst inside of me. Surgeons drained over 2.5 litres of poison caused by endometriosis. I woke up with two tubes each side of my stomach which was draining poison and blood into bags either side of me, along with staples the entire way along my knicker line where they cut me from left to right. I also had stitches higher up across my right abdomen where they performed open surgery to remove my appendix and smaller openings from key hole incisions. During this stay in hospital I was nil by mouth and lost over three stone in weight resulting in muscle wastage and being extremely weak.

Following this procedure, I was given strong antibiotics via drip and daily blood tests to monitor inflammation and infection markers in my blood. This become even more so distressing after two surgeries when my markers hadn’t came down, and, to my horror, started to rise again indicating infection was still in my system. At this point I generally felt like giving up and I started to think I was going to die. Doctors made regular decisions to change my antibiotics in a bid to find one strong enough to fight this infection and gradually they begun to come down.

After seventeen days, I was finally allowed to get out of my bed and, eventually, I begged the doctors to make my antibiotics into tablet form so I could go home - which they did. Prior to leaving the hospital, the gynaecologist came to see me and informed me that my endometriosis had caused a secondary condition which they referred to as frozen pelvis, explaining that my organs have become glued together appearing in a frozen like state, sticking one organ to another, and that the hospital can no longer treat me and were referring me to London University Hospital for further surgery ASAP.

Since surgery, I have suffered with stomach complications where I have absolutely no appetite and blow up painfully when I eat a meal. I have followed a strict gluten, dairy, wheat and caffeine free diet as advised, however, my stomach has become extra sensitive to foods of all kinds causing acid reflux and a highly sensitive stomach.

My first appointment at London University Hospital, after further scans I was advised that my endometriosis has now spread to my bowel causing a large nodule which is growing deeply within my rectum, as well as my fallopian tubes are in ruins and will highly likely need to be removed, meaning I will never fall pregnant naturally. I asked whether I could freeze my eggs, however, I was told there was a mass of endometriosis seen on my ovaries meaning surgeons are unable to get to my eggs. I was also told if I was to ever fall pregnant naturally, it is highly likely it would be an ectopic pregnancy. The hospital advised I have a injection to turn my ovaries off resulting in a forced menopause, along with a six month course of Prostap injections to shrink my organs to a smaller size to make it safe for the surgeon to perform surgery.

I am now preparing and waiting for surgery, whilst suffering side effects from my medication, as well as being told by my surgeon he cannot promise this endometriosis won’t return within two months to two years, as all they can do is treat the symptoms because there is no cure. However, if only I was listened to in the beginning my condition may have never got this far but there is always hope and that’s what keeps me positive for the future.

Endometriosis has ruined my life. After almost a decade of being told my symptoms were normal and having to push for a diagnosis, this disease has now spread, ruining my organs and almost cost me my life during surgery. My purpose now is to raise awareness and educate women of the signs in hope to push for a earlier diagnosis to avoid a life of surgeries and heartache like mine, as well as giving back to those who are suffering.

Further reading:
:: Top model wants to educate girls about endometriosis after it ruined her career
:: Model struck down with rare pelvis-freezing illness is raising awareness of life-changing condition
:: Young model faces early menopause aged 26 after doctors mistook her endometriosis for IBS
:: 'MY BODY IS IN RUINS' Stunning glamour model lives in crippling pain from ‘frozen pelvis’ where her womb, bowel and intestines are all ‘STUCK together’ by endometriosis
:: Former model fights life-changing illness
:: Model faces early menopause after battle with endometriosis undiagnosed for decade


Thank you for sharing your story Carla.


If you would like to contact Carla, you can follow her on Instagram @womenwithendometriosis, Facebook Women with Endometriosis, Twitter @womenwithendo or through the Women With Endometriosis website.

You can also sign Carla's "Endometriosis awareness campaign for women aged between 14-18 in Education" petition, which is pushing for endometriosis to be set as part of the curriculum in secondary schools in the UK.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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Tuesday, 19 December 2017

Chronic illness and the new year

Image courtesy of http://bit.ly/2kKVtSC

:: This column was originally posted on Endometriosis News ::


New years eve is typically spent with a glass of bubbly in one hand, while you have a boogie and a fabulous night of socialising with friends. It’s not quite the same for those of us with a chronic illness though.

Some of us might be struggling to keep up appearances, fighting through the pain to see out the year as we are expected to. But, the rest of us will be sat at home, maybe having a very normal evening of television before an early night, feeling like we are missing out on all the fun.

Some people can also find the new year a particularly difficult time, mentally. A new year usually brings about a reflection on events that have happened over that year and resolutions for change for the coming year. “New year, new start”. A time to start afresh, make amends for past events, turn the page and become a new you. But what happens if your health holds you back from making those changes in your life?

As a chronically ill person, the ‘normal’ resolutions that everyone else would make don’t mean quite so much. Get to the gym more? Hmmm. Travel more? Maybe not. Sadly, those with chronic illness will still carry the same health setbacks, pain and sickness through to the new year making the coming year a challenge before it even begins.

If you really want to make (and keep) some new year's resolutions, why not try thinking of them in a different way?

Let go of expectations
Just because it’s a new year, doesn’t mean you must start afresh. Carry on the best you can and let go of any expectations you or others have put upon yourself. Think about what you have achieved this year. You might have been a busy bee all year and achieved lots. But there is no shame in having done less. You might feel some days like all you’ve done is get out of bed to go and rest on the couch. But hey, you got out of bed! Celebrate those small victories. And remember, expectations equal pressure, and we could all do with a little less of that!

Focus on the can’s not the cannot’s
Think of all the things you can do. It might not be much, and, because of the way chronic illness works, it will most certainly be different every day. But what can you do? Can you breathe? Yes. Can you get dressed? Some days. Can you get out of the house? Maybe tomorrow. Don’t fixate on the negatives because you can do so much. Even if they don’t seem important, you are still doing something.

Be gentle with yourself and practice some self love
You are not lazy if you don’t start going to the gym. You are not weak if you need to rest. You are not selfish if you need to put yourself and your health first. We are so hard on ourselves sometimes, especially as people who suffer day in and day out with illness. We want so much for ourselves and it’s not always feasible - but we are not failures in any way, shape or form because of our illnesses.

Let go of the negative
Whether it is our own self loathing, or maybe someone in our lives bringing us down. Let go. You don’t have to answer to anyone else. Think positively and take steps to banish that negativity.

Take baby steps
We might want to get somewhere quickly but that’s not always possible in the world of chronic illness. We have to pace ourselves and rest in between. Take baby steps towards each goal and then look back and see how far you’ve come. It’s similar to thinking about the year. You might think the year has been a waste of time but you’ve made it through all 365 days of that year - even when you thought you couldn’t. Keep going. Take it slow and easy. Eventually you’ll get there.

Look forward not back
Keep your goals in sight and look forward to them. Don’t keep looking back at what could have been or what has been.

Whatever you do this new years eve, and whatever the new year brings your way, I wish you all good health, happiness and love.

You can follow my Endometriosis News column here.

S.
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Monday, 11 December 2017

The complexities of living with invisible illness


:: This column was originally posted on Endometriosis News ::


What does a chronically ill person look like? Would you look at these photos of me, all made up, hair done and dressed, and think that I’m ill? Probably not.

I suffer with endometriosis, fibromyalgia, osteopenia and a range of other health and mental health issues. You might presume that because I can get myself dressed and put makeup on, that I am fit and able-bodied. But, I’m not. I am in pain, fatigued and on a range of medication in both photos. You cannot see my illnesses though, because they are invisible.

Some days I feel OK. I wouldn’t go as far as saying I’m fine, but I have the energy to get ready and leave the house. It doesn’t happen everyday. Sometimes, it doesn’t even happen every week. But, occasionally, I feel OK. I love nothing more than getting to use all my make up that sits gathering dust in between these times. Putting on one of the pretty dresses I’ve accumulated but rarely have the occasion to wear. Walking out of the front door. I get to see the real world. People. I love these times. Even though they are energy-consuming and I always have this nagging knowledge at the back of my mind that my illness will make me suffer for the next few days as payback; these times take me back to how my life should be.

I feel incredibly jealous of others that are able to live their lives as I want to live mine. Sometimes I feel anger towards others when they don’t live their lives to their full potential. I have learnt to appreciate the path my illness has led me down and in some ways I have discovered a gratitude for it. But that’s only because I don’t have a choice. I’ve had to start appreciating the little things that others might take for granted. Taking a shower, getting out of bed, making dinner; these are all massive tasks for someone who is chronically ill. But you have to look at them as positives when you have achieved them.

On certain days, usually after I’ve enjoyed an hour or two out of the house (but not always, because chronic illness has no rhyme or reason), I struggle with even the smallest of tasks. Getting out of bed, making myself a drink, stringing a sentence together. Chronic illness isn’t just about pain. It affects all of our bodily functions. You cannot think clearly and movement is restricted, often to the point where we cannot move independently. It is both physically and mentally exhausting.

Even on the ‘OK’ days, I have to take a range of medication to even get me to the point where ‘normal’ people start their days. There is never a point where I am not medicated and feeling good. It just doesn’t happen.

Chronic illness isn't straightforward and the fact it is invisible doesn't make it any easier for others to understand. It must be hard to see someone looking a mess, tears running down our faces, popping pills left right and centre, barely able to walk with the pain on one day, and then the next, be dressed and out the house like nothing is wrong. But, let me assure you, it’s all a facade. A face we plaster on to make us fit in with everyone around us. Something that makes us feel a little bit normal, even if it isn’t our own normal.

We’re not attention seeking, nor are we hypochondriacs. We are simply trying to live in any which way our bodies will let us.

You can follow my Endometriosis News column here.

S.
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Wednesday, 6 December 2017

My story: Emma O'Donnell


My name is Emma O’Donnell, I am 23 and live on the central coast in New South Wales, Australia.

I have struggled with period pain since I was 14, but it got a lot worse when I turned 20. I went in for my first laparoscopic surgery in May 2016 where I was diagnosed with endometriosis.

During the time I was having the surgery and recovering, I had recently finished my bachelor of nursing and was doing a new graduate program at our local hospital. Unfortunately, I lost this job because I did not recover quickly and needed too much time off. Since then, life has changed a lot. Again I am on long term sick leave (as I got a new job) because the pain is unbearable most days. I have good days and then really bad days!

I got married in January this year to the most supportive man in the world. I couldn’t do it without him and some days he is the only reason I keep going. We are now trying for a baby. It’s been 6 months and I am on Clomid for a few months before we embark on the next step of the journey, IVF.

It’s so amazing to have support networks from other women with this horrible disease and even more amazing hearing their stories. The encouragement is incredible.

We fight everyday with our own bodies, but we just have to remember that maybe one day we can say “I used to have endometriosis”.


Thank you for sharing your story Emma.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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Monday, 4 December 2017

Surviving the holidays with chronic illness

Image courtesy of http://bit.ly/2AwAmel

:: This column was originally posted on Endometriosis News ::


It’s the most wonderful time of the year, but the holidays can be a particularly difficult time if you have a chronic illness. Stress, exhaustion, generally feeling frazzled; it tends to set me on edge before I’ve even begun. December is my favourite month of the year, but, over the years, with my health declining, I’ve had to change a few things around and let go of unimportant expectations to just get me through to the other side.

Here are few tips that might help you survive the holidays...

Get organised
They say ‘preparation is key’ and it really is. Make a list of everything that needs to be done - from gifts that need to be bought, cards that need to be sent, food that needs to be bought and prepared, decorating that needs to be done; everything.

Don’t feel flustered that there is so much to be done. Once you have written your lists, you can prioritise what needs to be done first, delegate tasks to others and schedule things to certain days. Making lists is an important step for anyone trying to organise, but especially for those of us who suffer from the dreaded ‘brain fog’.

Start preparing in advance
Ignore all the odd looks and people exclaiming “Christmas!? But it’s only [insert month]!”. I start my Christmas planning as soon as Autumn comes around. It not only gives me plenty of time, but it also helps to spread the cost. If everything is left to the last-minute then it can add a lot of stress onto an already demanding time of year. Get writing those lists and have a think what needs to be worked on first. I like to start my shopping first because you can usually find quite a few sales happening in the shops between the end of summer and the beginning of the festive period which means you can save even more pennies.

Rest
It’s so important for those of us with chronic illnesses to take time out for ourselves and rest. This doesn’t have to mean days on end. It can be as little as sitting down with a cup of tea before attacking more of the ‘to do list’. Try and pace yourself, you have plenty of time after all. Take breaks in between tasks, maybe get out of the house if you can, have a nap - anything to take your mind off the matter in hand.

Remember to also try to factor in time to rest when you have something exertive coming up. Whether it be shopping or visiting family, it can take up a lot of that much-needed energy.

Simplify everything
Do you need to cook a big dinner if there is only you and your partner eating it? Try having something that you both really enjoy eating and that is easier to prepare instead of something you think you should be eating like a big roast dinner with all the trimmings. Does the whole house have to be decorated? Will people see those decorations? Try concentrating those decorations in the room you spend the most time in. Does the gift wrapping have to be so elaborate? Gifts bags are a much easier way of wrapping presents but can still look just as nice. Have a think about what is important and prioritise your energy into that task.

Break tradition
Christmas is full of traditions passed on down through families. Some of them can be quite energy-consuming. Have a think about what traditions are important to you. If it’s not meaningful, try breaking tradition and start new ones of your own. If you usually have family over for a home cooked meal, why not try going out to a restaurant for a meal instead.

Ask for help
It’s not solely down to you to do everything for Christmas. Ask for help and let people know if you are struggling or not feeling well. Some people have ‘decorating parties’ where friends and family gather to decorate the house for Christmas. If you have people coming over for dinner, ask them to prepare an item of food to bring with them, that way you won’t have as much to cook.

Do your shopping online
If you can’t easily get out of the house or if hoards of people send your anxiety sky-high, do your shopping online. You can quite often find discounts for online shops too.

Most importantly, enjoy!
Don’t let your health spoil this lovely time of year and precious memories with loved ones.

Have a wonderful Christmas!

You can follow my Endometriosis News column here.

S.
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Friday, 1 December 2017

Hotteeze heat pads


I was contacted recently by Hotteeze and asked if I would like to help them raise awareness of heat therapy by trying some of their heat pads... Of course, it was a big fat yes!

Here's the important stuff...

What is Hotteeze natural heat therapy?
Hotteeze heat pads were created by Donna Burke in 2004 after she was given a self heating pad by her chiropractor for her lower back pain. Hotteeze were launched in 2005 in Australia, initially selling in physiotherapy clinics and chemists - but can now be found in hospitals, schools, football stadiums and they are used by people of all ages for a variety of reasons. The pads are made in Japan and have been endorsed by the Australian Physiotherapy Association since 2012. 

Hotteeze are made from all natural biodegradable eco-friendly ingredients (including iron, vermiculite and water), are ultra-thin and odourless. The filings inside the heat pad react with oxygen in the air to create heat so they start heating up as soon as you open the packet - no wires or microwave required.

There are three different types of Hotteeze available:

Hotteeze hand warmers come in a pack of 10 and are individually sealed. These don't have an adhesive backing which means you can hold them in your hands, pop them in your pocket or tuck them in to gloves. Hotteeze hand warmers stay hot for 10 hours.
Hotteeze for feet come in a pack of 10 and are individually sealed in to 5 pairs. They are designed to fit in to men's and women's shoes and the adhesive backing means they can be stuck to socks without them moving. The Japanese believe that the feet are the second heart and by keeping them warm, you keep healthy and “genki” by keeping your chi energy flowing from the tip of your toes all over the body. Hotteeze feet pads will keep toes toasty for 5 hours.
Hotteeze heat pads come in a pack of 10 and are individually sealed. They are perfect for those times you need a steady supply of heat. Hotteeze heat pads stay hot for more than 12 hours.

Hotteeze provides natural relief for a variety of ailments, including:
:: back pain
:: period pain
:: arthritis
:: shoulder pain
:: neck pain
:: knee pain
:: elbow pain
:: wrist pain
:: muscle soreness

... But they can also be used to keep you warm on cold days!

How to use Hotteeze

Simply open the packet, remove the adhesive paper from the back of the pad and stick the heat pad on to your undergarments wherever you need the heat. Do not stick the pad directly on to your skin.

After use, you can dispose of the heat pads in your normal household waste. 

Alternatively, the contents of the heat pads can also be used as a soil conditioner, which contributes to the reduction of wastes. Once cooled, cut the pad open with scissors and sprinkle the contents on your garden. The outer material of the heat pad can be disposed of in your household waste as it is combustible (and does not generate toxic gases). The contents of the Hotteeze heat pads are mainly iron filings and the soil conditioner is potassium chloride (other ingredients are water, vermiculite and activated carbon).

Why should I try Hotteeze?
Heat therapy (thermotherapy) has been used by the Japanese for hundreds of years. They believe that heat can be used to boost the immune system and prevent colds and sickness. 

Heat therapy is most commonly used for it's therapeutic effects, including:
:: decreasing joint stiffness
:: reducing pain
:: relieving muscle spasms
:: reducing inflammation
:: aids in increasing blood flow

Heat therapy is effective because of the three channels it activates that get the body working to sooth itself:

1. Stretching of soft tissues One of the most common reasons for the employment of heat therapy is stiff, sore muscles. What heat therapy does here is to stretch and relax the muscles it’s applied to, allowing them to loosen and ease into more natural positions.
2. Dilating skin and muscle blood vessels Another prime function of heat therapy is its dilation of blood vessels in the skin and muscles. This widening of vessels increases the blood flow to the areas where the heat is applied, raising oxygen and nutrient levels and leading to more rapid repair of damaged tissue.
3. Stimulating dermal sense receptors Heat therapy activates sensation in the skin where it’s used, effectively crowding out a portion of signals from stiff and sore muscles. Because of the brain’s limited ability to handle incoming sensation, anything you do that raises sensory “noise” to the brain - from pinching yourself to heating sore parts - can be effective at reducing the effects of tender muscles.

Where can I buy Hotteeze?
Internationally: Hotteeze heat pads are available in chemists across Australia, including Chemist Warehouse, Nova Pharmacy and Pharmore Pharmacies, but please check here for further stockistsYou can also purchase Hotteeze directly from their Australian website.

UK: Hotteeze heat pads are available to purchase primarily online in the UK, from Amazon, Molly Mojo, Ibuprofen or Provitality. You can also purchase Hotteeze directly from their UK website.

Anything else I should know?
You can find more information on Hotteeze via their website or by visiting their Twitter or Facebook pages.

Sound good, don't they? Well, they are good! 
I have to admit, I love this type of heat pad. I mean, you know me, anything remotely similar to a hot water bottle and I'm all over it! But these are just so handy! 

The individual packets make them great to keep in your handbag for when you're out and about. I can keep one in there, just in case, without worrying about it weighing my bag down!

They're really easy to wear. They're not at all bulky which means you can wear them under tighter clothing. You can also fully move around without wires or the need to hold it in place with your hands restricting you... You can also stick them just about anywhere.

The heat is a 'good level' - it doesn't burn but it projects enough to help relieve any pain, and they stay hot for what seems like ages!

... Thanks for giving me the opportunity to try these out, Hotteeze!

S.
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Wednesday, 29 November 2017

My story: Meike Wise


My story started many years ago. I grew up in The Netherlands and started my periods when I was just 13 years old; immediately, I experienced heavy bleeding and painful cramps. I was prescribed the birth control pill at age 14, which I never failed to take. Throughout the years, chronic fatigue kicked in and my periods became agonizing and caused regular absences from school and work. Still, I was not informed nor did I know this was abnormal.

My life went on, I moved to the UK and, at 26, my partner and I decided to try to have a baby. I stopped taking the pill and I was incredibly lucky to become pregnant two months later. My pregnancy was a challenge due to severe back pains towards the end, yet also a thrill, as I didn’t have to worry about menstruating for the entire nine months.

It wasn’t until my beautiful son was born that my pelvic pain escalated dramatically. I spent many days and nights in agony without receiving any support from my general practitioner; he claimed period pain was normal and over-the-counter medication would help - the usual story.

About a year after my pregnancy, I was admitted to the hospital with acute abdominal pain. A laparoscopy, performed by a general surgeon, concluded a burst cyst caused the severe pain and infection. I was advised to see a gynecologist for more information, as my issue could possibly be endometriosis. This was the first time I ever heard this term.

It turned out getting a referral to a gynecologist was practically impossible. My general practitioner refused to provide me with the referral I clearly needed! Fortunately for me, my family and I were about to emigrate to Australia and I was relieved to receive a referral on my first visit to my new Australian GP.
At that point, my pain was unbearable; I was grateful to be able to visit a gynecologist on short notice (at a cost). The doctor could also perform surgery through the government’s system, if necessary, without the need for private health insurance. The benefit was the ability to schedule my surgery pretty much straight away!

He was surprised to find absolute carnage inside of me; he diagnosed me with endometriosis and observed damage to my bowel as well. Before he was willing to touch that, I had to have a colonoscopy and endoscopy to rule out any damage on the inside of my bowels. Thankfully, this was all clear and a third laparoscopy took place to fix the bowel damage with help from a colorectal surgeon, and remove the remainder of the endometriosis and scar tissue.

It took several months for me to acclimate to the results and, I must say, it was probably the worst I ever felt about my health, but I was determined not to let this condition beat me. Instead, I took the time to start researching the impact my lifestyle had on my pelvic pain and my endometriosis, and the way I was feeling.  

I found a lot of information out there on pelvic pain and endometriosis, as well as what can medically be done to relieve (albeit temporarily) the pain. Beyond that I discovered a sisterhood of women experiencing exactly what I was, which gave me great support - and still does.

My initial search was for a forum providing consolidated information on the lifestyle and dietary aspects of endometriosis and pelvic pain. Although I understand not a lot of research has yet been completed with regards to these aspects and, that this is, like medical treatment, very individualistic (what works for one doesn’t work for another), I really struggled to find credible information. Research shows that women with pelvic pain and endometriosis are often forced to become their own healthcare experts, so I figured I was not alone in this exploration. Therefore I started the ‘The Endo Lifestyle’ blog to help other girls and women by informing them of my research and personal experience, as well as assisting with living with pelvic pain to the best of their abilities.

As I recovered from my surgery and adjusted my lifestyle according to plausible advice and information, I started feeling significantly better. Almost three years later, I now embrace a life that suits me, not my condition. I can honestly say I feel healthier than I ever did before!

I strongly believe every woman with endometriosis and pelvic pain should not have to do months of research to find out how she can best manage her life; she should be entitled to easy-to-access information. I have therefore created a 'Practical Self-Management Guide for Living with Endometriosis and Pelvic Pain' that will be available real soon!


Thank you for sharing your story Meike.

If you would like to contact Meike, you can follow her on Instagram @the_endo_lifestyle, Facebook The Endo Lifestyle or through her site, The Endo Lifestyle.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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Monday, 27 November 2017

5 reasons endometriosis is embarrassing

Image courtesy of http://bit.ly/2zsBYEp

:: This column was originally posted on Endometriosis News ::


Endometriosis is embarrassing. Full stop. It involves periods, leaks, problems with going to the toilet, problems with sex, the reproductive organs and pain. It’s not something that is easily or, often, willingly spoken about.

So, what is so embarrassing about endometriosis?

1. Periods
Periods aren’t nice. They’re messy, smelly, make you feel dirty and most women will have some discomfort whether that be down to pain or water retention. For women with endometriosis (amongst other conditions), periods can be extremely heavy and also irregular, which can mean pads can leak, clothes can get stained and dignity can be lost.

Somewhere along the line, there seems to have been some unwritten rule which means you shouldn’t speak about periods. But it’s this way of thinking that has made menstruation a taboo subject. In the process, this has stopped women from discussing their bodies with their peers and, furthermore, stopped them finding out what is and isn’t ‘normal’. This hasn’t helped conditions like endometriosis. For something as trivial as pain, it’s hidden and women are thinking it’s normal for periods to be painful because it’s not talked about.

There have been movements over the last few years to get women (and men) speaking about menstruation. But, with adverts still showing women able to take on the world when they are on their periods, the reality is clearly still being ignored.

2. Problems with going to the toilet
Personally, this is the most embarrassing thing with regards to endometriosis! Going to the toilet isn’t easy for a woman with endometriosis. On top of the pain and discomfort, we also have to deal with wetting, constipation and diarrhoea.

I have endometriosis on my bladder and, at my last surgery, my bowels were still clear of the disease, but several different parts of my reproductive system were adhered to them. Because of the endometriosis on my bladder, I suffer from incontinence. No amount of pelvic floor exercises will change this because mine are exactly as they should be. It catches me completely off guard sometimes and, to be honest, I’m mortified by it. But, I know I’m not the only one who has this issue.

On top of that, bowels + endo = ouch!! It’s bad enough that wind can make me almost jump out of my skin with the pain it can cause. But needing to actually open my bowels - the pain is horrendous. Needing to go to the toilet isn’t something you can do before you actually need to go so there is no way of preventing the pain. It’s rips through you like a stake. Constipation is uncomfortable at the best of times, but add in the pressure it can create on other organs inside your body and it becomes downright painful. And diarrhoea. Out of nowhere, you can have an upset stomach. You’ll spend all day wondering it was something you’ve eaten, asking those who have eaten with you if their stomachs are OK, just to find out that it’s nothing but endometriosis causing it.

3. Painful sex
Not every woman with endometriosis will find sex to be painful (dyspareunia), but, it is a common complaint. And given the intimacy of this subject, it can be truly embarrassing when pain stops you enjoying the moment. Endometriosis can also cause bleeding during or after sex which isn’t pleasant for either party involved. Painful sex can sometimes lead to women completely avoiding any sexual acts.

4. Brain fog
Brain fog, or clouding of the mind, is common in those with chronic pain conditions and is often the result of a mixture of medications being taken. But, when you are in pain, you can’t think straight. Brain fog can make you forget what you are speaking about mid-sentence. It can make you forget someone’s name when you have known them for years. It can make you appear to be the ditziest person in the room when you could have the highest of educational qualifications.

5. Talking about the subject in general
Why is it so embarrassing for us to speak about our own bodies? I mean, we’re all human. We all function (relatively) the same. But, speaking about something as private as our reproductive system and our bodily functions can be almost humiliating. The older I’ve gotten and the longer I’ve had endometriosis, the less I’ve been bothered by speaking out about anything that is involved. In fact, I want to shout it all out to the world because we need this awareness. However, I do still find it an embarrassing topic and I do occasionally find myself actively avoiding the topic with certain people. It can be especially problematic in the workplace. Trying to explain the inner workings of your body to an older, male, boss can be particularly difficult.

You can follow my Endometriosis News column here.

S.
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Saturday, 25 November 2017

Nexplanon implant: three months in


It's been a bit of a mixed bag of happenings with my implant since my 2 month update.

I mentioned last time that my implant was causing everything to flare. Since then, it's also started irritating the sciatic nerve on my right side, whereas I've only had that before on my left side. I've also had lots of sporadic days of pain where it's felt like it's come on for no reason at all. I've also felt very nauseous at times. My anxiety has also been through the roof again and I've been struggling with that a lot.

I saw my doctor a few weeks ago as I knew there was an additional pill that I could take alongside the implant if I was continually bleeding (which I have been since mid-September). She repeated what she had told me a few months ago, that she didn't think this was going to work. She also said that filling me with even more progesterone isn't going to do anything but, as always, it was worth a try. I've been taking one of these Desogestrel tablets once a day since that appointment and then I see my doctor again in December if they haven't stopped me from bleeding. She made it sound that we are making the first steps to getting this thing out of me now.

Well, the pill hasn't stopped me from bleeding, but, I've only had mild pains since I started it. Whether that's a coincidence, I don't know. But, since it's not stopped me from bleeding, I'll be seeing the doctor again in mid-December anyway.

I never wanted to have the implant and I've wanted it out of me for months now. But I do feel sad that yet another treatment has done nothing for me (besides making my pain worse). When you're down to your last few options and those options aren't working... Ugh. Will I ever be free of this pain??

S.
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Friday, 24 November 2017

Healthline's Best Blogs Awards 2017


Healthline have launched their Most Loved Health Blogs Contest for 2017 and EMLWY is participating alongside a list of wonderful bloggers who write about a whole range of health topics including endometriosis.

Voting is now open and closes on Wednesday 6th December 2017... And you can vote more than once if you so wish!

I would absolutely love it if you could just spare a moment to vote for EMLWY. It's 6 years old now and, although it started off as a personal blog, a place for me to vent all my frustrations, I've worked really hard over the years to make it a place for anyone with endometriosis to come to and find some support and to learn about the disease.

I'm up against some tough competition and I don't expect to get anywhere close to winning, but if every person who reads this votes then I would truly be grateful!

You can vote here or by clicking the voting button on the right of the page (just scroll down a bit!), and all you have to do is enter your email address. Healthline won't spam or sign you up to anything. It's also completely anonymous so I won't see who has voted... So, if you don't want to vote - don't worry! You're under no obligations to do so!

Thank you in advance.... And please, get voting!

S.
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Wednesday, 22 November 2017

My story: Jess


My name is Jess. I have lived in Melbourne, Australia, my whole life up until two weeks ago. My husband, daughter and I have moved to the Cayman Islands in the Caribbean.

I struggled with endometriosis for many years, well before I knew it was a disease. I always had bad period pain but I thought it was normal... During one cycle I started to bleed outside the time of my actual period. This happened for a few months before I began seeking medical help. I was diagnosed with endometriosis after a laparoscopy.

The laparoscopy only helped for a few months. The symptoms came back so my partner and I decided to try for a baby. After 9 months of trying to conceive, my gynaecologist advised we will need to do IVF. We were booked in for our initial appointment with the doctor to talk about the journey we were about to embark on, but, before the appointment on that same day, I decided to take a pregnancy test since I'd had an extremely vivid dream that I was pregnant... I did the test and it was positive! Total miracle!

Once my period came back after I stopped breastfeeding, my symptoms came back with a vengeance. Having a very active toddler and crippling pains to the point of being bed ridden is very difficult to manage. I had another laparoscopy in October last year which helped me fall pregnant again. Unfortunately, I had a miscarriage at the end of January which shook me to my core and another miscarriage in May. No one can prepare you for the pain and sadness.

For the last 6 months, I've been seeking alternative remedies to help with the pain. I've had weekly fertility acupuncture which has changed my cycle and reduced the pain and heaviness of the bleeding. I'm also taking Chinese herbs which have reduced the severity of ovulation pain and the unbelievable pain of my periods. I'm so happy with how far my body has come after all the trauma it's been through this year.

I am so grateful for everything I've endured. It's shaped me into the strong, resilient mum that I am today. Having my little online community @endometriosis_australia has helped me connect with women all around the world who suffer the same way I do. I am one of the lucky ones who was able to conceive naturally and I remind myself of that every day.

Keep fighting the daily battle, you're definitely not alone.


Thank you for sharing your story Jess.

If you would like to contact Jess, you can follow her on Instagram @endojess_.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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Monday, 20 November 2017

Painful sex and endometriosis

Image courtesy of http://bit.ly/2najSFq

:: This column was originally posted on Endometriosis News ::


Painful sex (dyspareunia) is one of many things women with endometriosis may experience. It can be one of the first indicators that something is wrong with your body. It was for me anyway.

I lost my virginity when I was 17 and I didn't have any problems for a few years. On the odd occasion I would bleed during or after sex but I never thought it was something to be concerned about. The first time sex became painful was when I was 21. I eventually went to the doctors and that lead to me being diagnosed with endometriosis.

So, is this the same for everyone? Will every woman with endometriosis feel pain during sex? Well, no.

Endometriosis occurs differently in every woman and can be discovered under a whole range of circumstances. Not every woman will feel pain during sex, in the same way that not every woman will suffer the same symptoms.

But, for those of us that have to bear the brunt of painful sex, what can we do about it?

Communication
Sex can be a difficult and sometimes embarrassing topic to discuss. But the key to a successful sexual relationship is communication and you shouldn’t feel ashamed for being honest and speaking about it. You should be able to speak openly to your partner. Don’t be afraid to say “stop” or tell them that it’s hurting. Tell them what feels good and what doesn’t. You might find that your partner is also finding it difficult because they don’t want to hurt you.

If you are in a new relationship and are still to get to know each other, or you’re not in a relationship with your sexual partner, communication can be particularly difficult. Try to judge the situation and do what feels right for you both.

Put yourself and your needs first
It isn’t selfish to do what feels right for you. You might feel that you don’t want to say anything as you are trying to please your partner and keep them happy. But, if you are in discomfort, do not feel like you must continue. Sex can very often aggravate the symptoms of endometriosis so it’s better to do something about it at the time rather than be in discomfort for days on end.

Switch things up
Experiment. Change position or gently steer your partner around your body. Be open to trying new things. You’ll discover what works well for you both position wise. And remember, sex doesn’t have to be penetrative. There are plenty of other ways to have an intimate time together.

Being intimate doesn’t have to mean sex
Connect with your partner in other, non-sexual ways. Make them aware of your feelings for them and make sure they know that you do want them. Talk to them. Give each other compliments and make time for small gestures of affection.

It is totally normal to not feel in the mood all of the time
Sometimes, you may find your partner can’t get anywhere near you because of how much pain you are in. Or, amongst the haze of hot flashes and fatigue, you may not have the energy to be close to your partner. Endometriosis and all of its treatments can affect your libido.

Your mental state and feelings can also affect your libido. You might be fearful of the pain that sex could create or, maybe you’re not feeling attractive because you have a swollen tummy. But, don't push your partner away without explaining. There is nothing wrong with just not feeling like it.

The most important piece of information I can give you though, is that painful sex isn't normal. So please, if you experience any pain, see your doctor or healthcare provider. It may not be endometriosis but either way, you don’t have to suffer in silence.

And for those of you who are yet to have sex, please, don't be afraid. Sex can be scary enough without thinking about the complexities of pain and positions.

You can follow my Endometriosis News column here.

S.
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Tuesday, 14 November 2017

Instagram me!

Do you remember when I tried that whole blog Instagram thing a while ago and then wasn't sure and then decided to get rid of it? Well, I'm giving it a go again and this time it's here to stay!

So, now, you can follow me over @emlwy for all things chronic illness or on my personal Instagram @thatgrrlshireen for a bit of everything!

Hope to see you all over there and be sure to come and say hiiii!

S.
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Monday, 13 November 2017

10 things you might not understand about endometriosis

Image courtesy of http://bit.ly/2ryLjuV

:: This column was originally posted on Endometriosis News ::


Those with endometriosis know all too well what it’s like to live with this life changing disease. However, it can be difficult to understand the impact endometriosis can have on a woman’s life, if you have never suffered with it yourself.

Here are 10 things that might help you understand endometriosis a little more.

1. Endometriosis isn’t just a bad period
Endometriosis is an all-encompassing disease. It isn’t just a bit of pain while you’re on your period. Endometriosis can affect every single part of your life. It can cause problems every day of your reproductive life and can continue to do so after menopause.

2. The pain can affect you at any time, not just during your period
Some might only get pain while they are on their periods, others will be in pain everyday. You might be feeling good and then have a sudden onset of pain. Or you might have had a busy day and the next be in pain again. Sometimes you can predict when your pain will be worse but, generally, endometriosis is totally unpredictable.

3. The pain isn’t always just in your abdominal area
Like period pain, the pain of endometriosis is felt in your abdominal area. But, unlike period pain, the pain endometriosis causes can also radiate to just about every other part of your body. This includes your back, legs, chest, neck, shoulders and arms. It can also cloud your mind and make it hard to concentrate or focus.

4. Endometriosis affects you physically and mentally
Endometriosis interferes with so many different aspects of a woman’s life. The pain alone can make you miss time from work, miss out on a social life, effect relationships. But, endometriosis can make you feel very isolated and you may feel like your body is against you. Anger, frustration, sadness and fear are just a few of the emotions that can affect your mental health. Depression is common in those with endometriosis.

5. Endometriosis will affect every woman differently
Endometriosis can be found anywhere from the vulva to your brain - and everywhere in between. Because of this, even if you find two women with endometriosis in the same locations, the likelihood that they will be experiencing the exact same symptoms are relatively slim. Pain is the main symptom of endometriosis and will be felt by almost everyone, but other symptoms like pain during or after sex (dyspareunia) and infertility might not affect everyone. You could have also been diagnosed with stage I (mild) endometriosis but be in more pain than someone with stage IV (severe) endometriosis.

6. No single medication or treatment works for everyone
Because we all work differently, it makes it difficult to find a treatment that will help us cope with the symptoms of endometriosis. Unfortunately, treatment is rarely as simple as taking a few painkillers. More times than not, what works for one person, won’t work for another.

Treatment options come under three categories: surgery, hormone treatment or pain relief, and can include options otherwise used for cancer treatment i.e. Lupron (Leuprolide Acetate) is used to treat the symptoms of prostate cancer in men. Treatments are not easy on our bodies and coping with the side effects of them can sometimes be as difficult as coping with endometriosis itself.

7. Endometriosis isn’t easy to diagnose
Diagnosis, on average, can take up to 7.5 years. Endometriosis has a variety of symptoms commonly associated with other illnesses which makes misdiagnosis common. Not only do we have to try to make our doctors understand something neither one of us can see, but there is no one-stop blood test that can confirm or deny the disease. The only way to diagnose endometriosis is through invasive surgery, which can create complications in itself.

8. There is no cure
At some point post-diagnosis, all of us will be told that something or other will cure endometriosis. Hysterectomy, pregnancy, changes to your diet, yoga… The list goes on! Unfortunately, there is (currently) no cure for endometriosis. However, these options may bring relief for some - just not everyone.

9. You can develop endometriosis after having a child
Although the majority of women with endometriosis will be told that pregnancy can cure endometriosis, for many, their endometriosis will come back just as bad, if not worse post-pregnancy. There are also some women who will only develop the symptoms of endometriosis after having a child.

10. Endometriosis is inside our bodies, so you can’t see it
As with the common cold, endometriosis is invisible. Please keep this in mind when we speak out about the disease. Although we might look OK, we have usually had to take a variety of medications before we even begin our day.

You can follow my Endometriosis News column here.

S.
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