Wednesday, 28 February 2018

My story: Lenska Tweedy


Ever since I can remember having a period, it has been excruciating. Heavy bleeding, terrible stabbing pain and crawling over in a ball was how I met what we call womanhood. From the age of 12 I would wake up in a cold sweat, in my sleep stumble to a bath as hot as I could handle in a hope to relieve the pain. My mother many a time would find me yellow in the bathroom and threaten to take me to hospital to try and have it elevated.

When I was 15 I developed a pain in my right abdomen, which would become present often after a meal. To this day I have just learnt to live with it. Sometimes disappearing for months, other times, and more recently becoming disabling.

A painful menstrual cycle accompanied by diarrhea became a normal part of my life. Once a month I would stay home or take myself off to the nurse’s office in an attempt to sleep it off with a hot water bottle by my side. During this time, however, I developed a terrible reflux pain up my esophagus, especially when taking painkillers for my symptoms. The only thing that would eventually allow me to have a “normal” menstrual cycle was the pill, which I took for a short period midway through university.

At 22 my periods stopped for 6 months, I gained 10kg in 3 weeks and developed server anxiety. After seeing a doctor, gynecologist and a psychologist I was diagnosed with PCOS (Poly-cystic Ovarian Syndrome) and anxiety. For the severe right side abdominal pain, increased bloating and gas, a gastroenterologist came to the conclusion of IBS. I then began Yaz, 10mg Cyprilex and a series of diets for the weight gain and abdominal pain. My period went back to a normal 28-day cycle, my anxiety decreased but the abdominal pain never subsided. After seeing a reflexologist I was moved to Melodene due to the fact that I had clots in my family and this was a friendlier pill. This change also slightly reduced the anxiety.

My reflexologist also recommended a low carb diet, with hopes that the recognized bloating from grains would help ease the pain. Throughout my life I have suffered from “growing pains” in my legs. Something I had learnt to get used to and address with hot water bottles on my legs.

At 24, filled with hot water burn marks on my stomach, I seeked help with another gastroenterologist who once again assumed IBS as after scans and ultrasounds nothing worrying was found. This was also the year that I had my first panic attack. After being rushed to hospital, convinced I was having a heart attack, I was told it was a panic attack and was given pills for future occurrences. I also began seeing a physiotherapist due to an increased pain in my back and later hip.

Throughout this time my stomach pain was worsening, I had increased bouts of constipation, diarrhea during my period and severe bloating.

Earlier this year, at 25, I was rushed to hospital with a sharp gut crunching pain in my left abdomen. After drips and throwing up I was taken for an x-ray. Nothing was found. Due to a recent bladder infection there was a toss up between a kidney stone and bladder infection, and finally the doctor on call diagnosed it as a bad bladder infection.

Finally some answers:
Due to this and the never ending abdominal pain I decided to see a general practitioner in the hope that she may look at me holistically and aid me in my plea for normality. After mentioning all my symptoms she encouraged me to under go some blood tests and see a gynecologist with a suspicion that I may be suffering from endometriosis.

I saw a gynecologist who confirmed the suspicion but wanted to avoid surgery. I have been put onto Visanne and at the age of 26, after being on it for 3 months, for the first time in 14 years I had minimal pain. The relief was unimaginable!

However, this is not where my story ends. In the last month of 2017 I suffered two panic attacks. I saw my reflexologist again who took one squeeze of my foot and a look in my eye and proclaimed, without a word of a hint from me, that I had an ovarian cyst burst earlier in the year. (Hence the extreme pain.) I also had the pain in my right abdomen return and filled with dismay returned to my gynecologist for more answers. We decided that the relief I had (no more bloating, stomach pain and less pain in my side) was as good as it was going to get and if I needed more I would have to revisit the gastroenterologist. She did, however, acknowledge that my move towards a meat free diet (vegetarian with minimal fish) was a good option. I had researched that a vegan diet, with little estrogen, was ideal for endometriosis sufferers.

After mentioning to a friend my condition and constant suffering (pain in my right abdomen) she recommended I chat to her mother (a reflexologist). She encouraged me to try not having dairy. And this was my final answer. I simply started by removing milk from my diet and for almost 2 months now I have been without any pain. I can honestly say I only experience it when I eat too much sugar or any milk. I feel freed and so relieved!! It has been a long journey of pain and suffering but I feel that I can finally live a normal life again!  My current remedy is Visanne and no milk. I also find keeping a good exercise programme of running and yoga helps too. This also helps my anxiety, apparently a condition that goes hand in hand with endometriosis.

I really hope that my journey can help others move towards a more normal lifestyle. I know that this is not the ultimate solution and I am aware that I still have challenges now and lying ahead of me with this condition. But, for now, I am ecstatic about feeling normal and pain free for the first time in 12 years! 


Thank you for sharing your story Lenska.

If you would like to contact Lenska, you can follow her on Instagram @lenskatweedy.

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, 26 February 2018

What does endometriosis feel like?

Image courtesy of http://bit.ly/2GNY0oy

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


It’s difficult to describe pain. When we talk to our doctors, we usually try to describe pain with words like “sharp” or “dull”, or by using a pain scale from 1-10.  I’ve never felt I’ve been able to fully convey how endometriosis actually feels, and I’m often left with the sense others think it’s not as bad as we are making it out to be, especially since the pain is invisible.

I often see women asking what endometriosis feels like because they think they might have it. There are many similarities between endometriosis pain and the pain that a woman would feel during her period and I think this is why endometriosis is commonly mistaken for a ‘bad period’.

So, what does endometriosis feel like? Endometriosis pain can vary from day-to-day (even hour to hour!) and it’s different for every woman. Some feel pain constantly, whereas others might only be in pain around the time of their period. As someone who has lived with endometriosis for 22 years, this is what it feels like for me:

Abdominal pain
Abdominal pain is the most common symptom of endometriosis. For me, this pain is variable in strength and type. Some pains can come and go, whereas others will affect me for days afterwards.

Leading up to and when I am on my period, I get a dull, low down ache around my ovaries. My tummy begins to feel heavy and empty, and the pain lightly burns. When my period is heavy, my pain is often at its worst. This pain leaves me doubled up, unable to move. Often you will find me curled up in a tight ball on the floor. It shoots through me like an electrical shock - burning. It can feel like contractions, tightenings with intense pain, coming and going every few minutes.

Endometriosis also causes sporadic pains. Sometimes these pains ache away for days on end but, other times, they will take my breath away with how sharp and sudden they are. For no apparent reason, my tummy can swell and become hard. When this happens, it feels like everything inside is also swollen and fighting for space. I also get pain caused by my bladder or bowels. When they are full, they press on to areas of endometriosis and this leads to pain when I need to go to the toilet. I have screamed with the pain of urinating. Sometimes it has felt like I am being torn in half. When I need to empty my bowels, it feels like I have a red-hot poker stuck in there.

Leg pain
I never get leg pain on it’s own. My tummy will always be aching and then it feels like the pain radiates outwards, down in to my legs. They ache deep inside. If only one side of my tummy is hurting, I will only get leg pain on that same side.

Endometriosis can also affect the sciatic nerve. With this I feel a sharp, burning pain deep in my buttocks and this then radiates down the back of my leg.

Back pain
I get severe back pain, not helped by an accident I had years ago. Endometriosis only exacerbates this. When my tummy aches, my lower back aches and burns. It feels like it hasn’t been stretched out in a long while.

Shoulder, neck and chest pain
Not every endometriosis sufferer will experience pain in the shoulder and chest area. It is a symptom of endometriosis on the diaphragm, which is thought to only affect up to 1.5% of women with the disease. For me, this pain starts around my right shoulder blade, runs up the side of my neck and down my arm. The best way to describe this pain is by likening it to toothache. It is a dull, nagging ache that makes me feel nauseous. I find poking my fingers in to my shoulder muscles soothes it momentarily, much like poking your tongue in to your aching gum.

The chest pains do not affect my breathing as such, but the muscles in my chest, which in turn makes it difficult to take in deep enough breaths. The pains feel sharp and shoots outwards, making me clutch at my chest.

Vaginal pain
Pain felt during sex (dyspareunia) won’t be a problem for everyone, but it is a common complaint. For me, it can feel like sandpaper being rubbed inside me and I get sharp pains which travel upwards in to my abdomen. More often than not, it will immediately reduce me to tears. This pain can affect me for days afterwards.

What does your endometriosis feel like?

You can follow my Endometriosis News column here.

S.
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Tuesday, 20 February 2018

Why I write about my health

Image courtesy of http://bit.ly/2C6Ks9n

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


We live in the age of online social networking, where we share even the most mundane elements of our lives. Not much is kept secret from our peers. But it is still deemed inappropriate to discuss your health problems online, for the world to see.

I didn’t start out with the intention of sharing my innermost secret health issues. In fact, I didn’t really know which direction I wanted to go in.

I had previously shared information and news articles about endometriosis on a Facebook group. I didn’t talk about my own problems on there though. As Facebook evolved, my group was deleted. I wanted to continue spreading the word about this little known disease, so I searched for a new outlet.

I started a general blog, adding things then deleting them. For some time, I didn’t know what I wanted to write about and I found it difficult opening up and sharing anything to the unknown. In 2011, “Endometriosis: My Life With You” was created. A place where I could continue to share information on endometriosis and my own story.

I had come to a standstill with my own health. I’d had the Mirena coil in for 21 months and the experience had been a rollercoaster ride to say the least. It had completely stopped working by this point and the pain was back full force. I was disheartened and lost - I hadn’t considered the treatment not working.

I didn’t write very often back then, but, when my endometriosis flared up in 2012, I embraced the blog and started using it as a source of therapy. What I really wanted was to find someone who understood what I was experiencing. I felt so alone in my struggles.

I wanted to show the world what living with endometriosis was like. What it actually meant to have it there every day, to cope with the emotions of it as well as the physical symptoms. My friends knew I had endometriosis, but I didn't really talk about what it was doing to my body. Writing gave me that opportunity.

My symptoms had worsened as the disease had spread over the years, and, yet, people still didn’t know what endometriosis was. Some had never heard of it before. I felt people needed to know about endometriosis because I certainly wasn’t the only person in the world going through this.

As I gained confidence in my writing, the blog became almost no holds barred. Over time, I’ve spoken about everything from painful sex to constipation, from incontinence to fertility counselling and treatments, and everything in between. I quickly passed the point of embarrassment and sharing became much easier. I was tired of living in so much pain and keeping quiet.

My goal became clear. I wanted to shout about endometriosis from the rooftops, as loud as I could for as many people as possible to hear. If I could just get people to read the word ‘endometriosis’, they might retain some recollection of it. They might question what it is or go off and search for answers themselves. Maybe someone would read it who wasn’t diagnosed but was suffering the same problems, not knowing there was an answer for what was causing their pain.

EMLWY became not only a place for me to seek help, but also for others to gain information on endometriosis and support for what they were experiencing. I’ve spoken to young girls who didn’t know what was happening with their bodies, or who were newly diagnosed. It reminded me of how scared I was when I was diagnosed back in 2005, when I was only 21. Some girls were only in their early teens and experiencing that same fear alongside all the other difficulties of a normal teenage life.

Along the way, I found I was supporting other women without knowing it. Women who were just as lost as me, and who, in turn, supported me. It gave me perspective when I discovered women who were in a much worse position than me.

I have become somewhat determined to not keep my health problems hidden purely for the comfort of others. I discovered that sharing this information, helped others. It empowered other women to start speaking out about their own problems, start writing them down for the world to see. One of my big hopes has always been that others will see what I, amongst so many other wonderful endo sisters, write and that they will do the same.

There is a disease out there, in the big wide world, called endometriosis. It affects millions of women across the globe. We need your realisation, understanding and support. But we will never progress in raising awareness if we don’t speak out ourselves.

You can follow my Endometriosis News column here.

S.
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Wednesday, 14 February 2018

My story: Taylor Lee


We all have unique events that have lead us here, on this journey. A journey that illustrates the struggles that we face every single minute of every single day. The struggles that we work so hard to push through. We struggle with the tasks that others take for granted such as taking a shower, doing our hair/makeup and putting a cute pair of skinny jeans on.

I am Taylor, a 24-year-old woman that is eager than ever to live life to the fullest each and every day. I have learned to push myself each and every day from the moment I wake up till the moment I go to bed.

I really can't remember when my symptoms first appeared. There wasn't a switch that turned on and all of a sudden my symptoms were present, they increased in severity as I grew older. I always remember having painful periods but I just believed that was just a part of being a girl. As a teenager, I would get very sick around the time of my period. I experienced bad abdominal pain, clotting, nausea, headaches, digestive issues. It would indeed disrupt my life.

I finally saw a gynecologist at the age of 16. I was put on continuous birth control (no placebos) at that time. My symptoms seemed more tolerable because I wasn't getting as many periods. At this point in my life, I was a junior in high school and I was so excited to move out of my parent's house, be on my own, attend a university, and have the real college experience. I ignored what my body was telling me.

It wasn't until I started realizing that I was having a difficult time regulating my low blood pressure (hypotension) that I decided that I should seek more medical guidance. I started getting more autoimmune-like symptoms such as lightheadedness, lack of energy, brain fog, weakness, and food sensitivities. Along with the ongoing abdominal and low back pain.

I then saw a cardiologist that did test after test, everything was normal. I still had continued symptoms. I was then passed to an endocrinologist, urologist, gastroenterologist, and numerous general practitioners in between. I felt like a 600-page library book getting returned over and over again because no one wanted to take the time to dig deep into to the novel and read it.

At this point I had so many misdiagnoses, so many tests, unneeded medication, I couldn't really grasp the reality of what life consisted of. Struggling to get out of bed, feeling terrible, staying at home while all my college peers are out having fun, and not being able to understand what is causing me to feel like this.

I was made to believe by a previous diagnosis from a gastroenterologist that the reason I was feeling this way was due to a stomach disorder. It wasn't until summer of 2016 that a stay at the Mayo Clinic proved that I did not have a stomach disorder but rather Pelvic Floor Dysfunction due to consistent muscle contraction.

Six months of pelvic floor physical therapy was what the doctor ordered. My symptoms continued. However, towards the end of therapy, my pain seemed more manageable. As many of you know when our pelvic region is in a lot of pain our pelvic floor muscles try to cope with it by continuously being contracted/tight.

Shortly after completing physical therapy I decided to get an IUD. The doctor that put my IUD in said to expect pain for the first six months. I pushed through and finally at month five I couldn't handle it any longer and got it removed. It was too painful. I was having more cycles and spotting. I wasn't on continuous birth control any longer. The IUD implantation caused my symptoms to get out of control.

I like to think of the IUD experience as a blessing in disguise because shortly after it happened, I crossed paths with an amazing doctor that really listened to me. She believed that my symptoms lined up with endometriosis and encouraged me to go ahead with a laparoscopy in order to get a clearer picture of what was happening within my body.

I had my first laparoscopy done last month. It was a clear diagnosis of endometriosis. They were able to take some spots out, however, a number of spots were very close to veins and they didn't want to risk taking them out at that time. In order to help manage this disease, my doctor and I have decided that I will stay on my current continuous birth control brand/pill form as well as a diet change. I am hoping for the best!

To everyone out there that is overwhelmed and frustrated with the symptoms of this disease or is looking for a diagnosis; keep on pushing through. I want us to be able to live life rather than just survive.


Thank you for sharing your story Taylor.

If you would like to contact Taylor, you can follow her on Instagram @taylorml30_.

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, 12 February 2018

Is endometriosis really just a "bad period"?

Image courtesy of http://bit.ly/2G4P65m

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


One of the main things non-sufferers tend to misunderstand about endometriosis, is that it isn’t just a “bad period”. Many of us have spoken out about the pain we are in due to endometriosis, only to receive a response such as “Oh yeah, I get really bad periods too! Have you tried taking paracetamol for it?”. It can become very frustrating when you are trying to help people understand what life is like with this chronic illness.

So, is endometriosis a “bad period”? Let’s have a look at some facts.

What is a period?
Menstruation, or a period, is defined by Planned Parenthood as “when blood and tissue from your uterus come out of your vagina”. Each month, the lining of the uterus (endometrium) thickens in preparation for a fertilised egg. With a fertilised egg, a baby will develop in the uterus. Without fertilisation, the lining is released from the body through the vagina as a period.

Menstruation usually happens once a month, in females between the ages of 12-52 (on average). In this time you will have around 480 periods, or fewer if you have any pregnancies.

Periods themselves do not hurt, however some women can have cramps and other symptoms that can make it uncomfortable. This is due to the hormones that are released during a period which cause the uterus to contract, enabling it to shed its lining.

What is endometriosis?
Endometriosis is a painful, chronic, gynaecological disease. It occurs when tissue similar to that which lines the uterus is found growing outside of the womb, usually in the pelvis (although it can be found elsewhere in the body), and develops in to growths or lesions.

Endometriosis cells react in the same way to a period, except these cells are located outside of the womb. During a woman’s monthly cycle, hormones stimulate the endometriosis. This causes it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body. This results in a build up of inflammation and scarring.

The inflammation can cause various organs to become matted together in a web of scar tissue (adhesions). These can cause chronic pain and may interfere with the normal function of organs, such as the bowel, bladder or ovaries.

Endometrial tissue can also form cysts on the ovaries. Some cysts, known as ‘functional’ cysts, may not cause any problems. Another form of cysts, known as ‘endometrioma’ or ‘chocolate’ cysts (so-called due to their appearance), can cause intense pain. If these types of cysts rupture, the contents of the cyst can spill out into the pelvic cavity leading to more adhesions.

What are the key differences between periods and endometriosis?
:: Periods are a natural process that all women will experience as their bodies physically mature. Endometriosis is a gynaecological disease affecting an estimated 1 in 10 women.
:: Periods typically last from 3-8 days and are usually regular. Most women will only lose between 5-12 teaspoons of blood. With endometriosis, periods can be irregular, last far longer and be extremely heavy. Some women bleed between periods or constantly.
:: Periods can cause some pain, but this can usually be relieved with painkillers, a heat pad or light exercise. Women with endometriosis describe their pain as persistent. It usually correlates with the menstrual cycle, however, pain may also be experienced at other times during your cycle including during or after sex, internal examinations, ovulation and bladder/bowel movements.
:: When your period is finished, any discomfort will go. Endometriosis is described as a chronic illness as it lasts a long time. It can cause problems every day of your reproductive life and continue to do so after menopause.
:: Period pain shouldn’t interfere with your daily life. Endometriosis pain can be so severe that women can feel nauseous and faint. For some, the pain can be debilitating, making even the simplest of tasks near impossible.
:: Period pain is usually limited to the lower abdomen, hips and back. Since endometriosis can occur in any area of the body from the vulva to the brain, pain will be felt in a more widespread area.
:: Periods themselves do not cause any complications. Endometriosis can cause infertility, bowel/ureteral obstruction, peritonitis from bowel perforation, an increased risk of cancer (particularly ovarian cancer) and an increased risk of miscarriage or premature birth.

Endometriosis is an all-encompassing disease that can affect every part of your life. It is so much more than just a “bad period”.

You can follow my Endometriosis News column here.

S.
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Monday, 5 February 2018

Endometriosis isn't a competition

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

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


I’ve loved watching the endometriosis communities online presence grow over the last few years. When I first started looking online for help, there were a lot less groups and blogs than there are now. Instagram had only just been created so there were no social accounts like you would find there nowadays. Women coming together in times of need, to get help and to share their own stories to help others; there is a real sisterhood with this disease.

One thing that has been very blatant though, is the competition that is strife within this community.

You might think I mean between websites, blogs or social accounts. And, yes, there is definitely competition there. Why does this account have more followers than me? Maybe because they can devote more of their time and energy in to gaining those followers, interacting with them and sharing content. Why has that blogger been sent products to review and I haven’t? Maybe that company hadn’t stumbled upon your blog yet or maybe their item is more relevant to that other person. Why is this person getting media attention and I’m not? Luck? But the competition doesn’t just stop there.

I so often see women competing within groups online. “I’ve had X number of surgeries”. “I’ve got endometriosis here, here and here”. “I’ve been in hospital X number of times”. “I’m in constant pain”. And, while it’s important to share your stories, you must remember that you are not the only person to have felt this way. By implying that you have it worse than anyone else only causes other women to silence themselves. I’ve seen it happen so many times. “I’ve only got stage whatever endometriosis and I’m only in pain during my period so I can’t even begin to imagine what you’re going through…”. These feelings shouldn’t be apparent in a chronic illness community.

I started writing because I felt alone and that no one understood the complexities of this illness. When I started speaking out, I found there were hundreds of women in the same position. We all needed support and reassurance. And that support empowered so many of us to continue raising awareness. Whether that be speaking more openly to friends and family, re-sharing the odd news article online, writing a blog about our experiences, or by creating support groups or meetings.

We need to stop competing and start listening. We might be sharing similar content but our audiences vary. We might think we have the worst case of endometriosis but I can almost guarantee there will be someone who has it worse. And we all share the same objective - to get our unified voice heard and to help future generations. Does anything else really matter when it comes down to the nitty-gritty? No. We are all hurting. We all have days where we think we can’t go on. We all want to be heard and for someone to say “It’s OK, I’m here for you”.

Endometriosis isn’t a competition

If we begin fighting against one another, we lose focus on the one connection we all share. We should all be working together, as one stable community. There is power in numbers so don’t fight against other voices working hard to bring understanding and support to the table. Endometriosis is such a varied disease. I doubt there are very few (if any) of us that have had the exact same experiences. If we are to ever get the help that every single one of us deserves, the world needs to know this.

Join forces ladies. Support your peers. Speak up. Be heard. Become one powerful force that the world can not ignore.

We are not one person. We are the 176 million.

You can follow my Endometriosis News column here.

S.
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