Monday, 22 January 2018

:: COLUMN :: When other health problems affect your endometriosis

Image courtesy of http://bit.ly/2DCoaN0
This weeks Endometriosis News column is now live! You can have a read of it here or by clicking on the 'Endometriosis News Column' tab, under 'EMLWY & BEYOND', at the top of the page.

S.
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Tuesday, 16 January 2018

:: COLUMN :: 5 ways to prepare for a consultation with your doctor

Image courtesy of http://bit.ly/2DzI9JD
This weeks Endometriosis News column is now live! You can have a read of it here or by clicking on the 'Endometriosis News Column' tab, under 'EMLWY & BEYOND', at the top of the page.

S.
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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:


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 her site, My Journey by Carla Cressy. The Women With Endometriosis awareness campaign site is currently under construction.

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

:: COLUMN :: Chronic illness and the new year

Image courtesy of http://bit.ly/2kKVtSC
This weeks Endometriosis News column is now live! You can have a read of it here or by clicking on the 'Endometriosis News Column' tab, under 'EMLWY & BEYOND', at the top of the page.

S.
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Monday, 11 December 2017

:: COLUMN :: The complexities of living with invisible illness

Image courtesy of http://bit.ly/2BUAVOp
This weeks Endometriosis News column is now live! You can have a read of it here or by clicking on the 'Endometriosis News Column' tab, under 'EMLWY & BEYOND', at the top of the page.

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

:: COLUMN :: Surviving the holidays with chronic illness

Image courtesy of http://bit.ly/2AwAmel
This weeks Endometriosis News column is now live! You can have a read of it here or by clicking on the 'Endometriosis News Column' tab, under 'EMLWY & BEYOND', at the top of the page.

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:

... 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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