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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Friday, 10 November 2017

Nexplanon implant: two months in


It's now been over 2 months since I had the Nexplanon implant fitted, so I thought I should give you a little update on how the last month has been.

I last updated you all after 1 month, and things had been up and very, very down! I'm glad to say that a lot of the things I mentioned then, have now calmed down...

I'm still getting headaches but they're not daily now so they're much easier to deal with. My breasts now feel back to normal. My skin has calmed down again and I'm just getting a few extra spots when it's coming up to my period - but that's nothing I can't deal with. And, my libido is finally back - though it got worse before it got better. At one point, even Danny touching me on the arm made me want to burst in to tears!

As for everything else... Well, it's been a bit of a rollercoaster.

I'm still finding my moods a bit up in the air at times and I am still quite emotional, but I'm not feeling quite as angry at the flip of a coin as I was previously. They certainly start ramping up around my period time but, isn't that just normal!?

One of the worst things that I've dealt with in this second month has definitely been the anxiety. As someone who's never really had a problem with it before, and only had mild bouts of it, this was on another level! It got to a point where I couldn't sleep at night and when I did eventually get to sleep, I was waking up constantly due to anxiety ridden dreams. It was really horrible. I didn't want to leave the house or do anything really. I just wanted to cry constantly and... It's really difficult to describe... It was all so ridiculous! My head was making up the silliest scenarios and I felt like the entire world hated me. Luckily though, I knew what was happening and I knew it was my hormones causing it. I just couldn't stop it. I eventually managed to wade my way out of the muddy waters, but, it took some effort. I started getting myself out the house everyday, even when I didn't feel like it, kept myself busy and played the denial card with my own mind really. Thankfully, it seems to have cleared now. I've had treatments cause depression before (shout out to Zolodex!), but anxiety was a new one to me as a side effect. I felt it coming on within the first few weeks of having the implant fitted, so I'm hoping it was just that sudden rush of hormones that caused it and now it's settled. But, yeah, that one took me by surprise.

The bleeding has been non-stop now since mid-September and I am fed up of it. It's not heavy, in fact, some days it's barely anything. But, it does get ever so slightly heavier when it comes to my period. At least, I'm guessing that's it's my period. But, the pain doesn't really correlate with the bleeding as it would do usually. On some of the worst pain days I've had, I've barely even spotted. And the pain some days is so bad and it comes on out of no where.

If you follow me on Instagram then you might have seen that I had a really tough time a few weeks ago when, suddenly, everything flared up. I was in AGONY. In fact, I've not felt that kind of pain in years now. I'm assuming it was because my actual period had started - not that I can really tell with the constant bleeding though. At one point, I had my TENS machine on my tummy, a heat pad on my back and I'd taken all of my tablets, and I was still in so much pain I didn't know what to do with myself. I just lay on the floor sobbing. Poor little Hunter kept coming over to check on me; bless him. I hate that he has to see me like this. I also had the most horrendous chest, neck, shoulder and arm pain from my diaphragm. I couldn't catch my breath properly because of the pain in my chest. And the dizziness: every single time I moved, I'd almost topple over again. Honestly, words don't even do it justice of how terrible I felt. It lasted a good while and when I eventually felt well enough to leave the house, I almost passed out as soon as we got in to town. It's actually really scared me. I do not want to be going through this every month.

I know endometriosis is unpredictable but it's even worse now I'm on this implant. I don't know whether I'm coming or going with it.

I had a doctors appointment yesterday about it (you might have seen on Instagram) but I'll let you all know about that in next months implant update... I'm a bit late writing this one!

I did also write a column on this time with the implant, so you can have a read of that here, if you wish.

So, it's not been a great month and I'm having a pretty rubbish time with it to be honest. I'm just hoping that this thing either starts working properly soon or I can get it out of me for good.

S.
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Wednesday, 8 November 2017

My story: Laurie Roma


I remember the first time I felt the pain in my lower right abdomen. Sharp and burning, it woke me from a dead sleep. It didn't go away for two days. I was 21. Over the course of the next few months, my entire life spiralled out of control. I suffered from constant and intense pain and became a zombie. The only time I slept was when my body gave in to pain and exhaustion. I withdrew from college and moved back in with my parents, who didn't understand what I was going through. I looked fine. The doctor couldn't find anything wrong with me... My blood work was normal and I was young. What did I know about pain? The doctor dismissed me as a young girl who couldn't handle cramps and sent me on my way. Several emergency room visits over the next few months eventually led to an ultrasound appointment, which showed large cysts on both of my ovaries. I was placed on birth control pills to regulate my hormones and a follow up ultrasound was scheduled. This became my routine: I'd go to work at my new coffee shop job at 5 a.m. (perfect for the insomniac in me), work until 2 p.m. when the shop closed and then go to the hospital two to three times a week for ultrasounds. The tests always showed the same thing - the cysts were growing. After one appointment, I fainted in the hospital lobby. One of the cysts had ruptured and I was going into shock. 

From there, things seemed to move quickly. I was given a new doctor, and he had a resident working with him who actually seemed to care. That was the first time I heard the word "endometriosis". She always called me by my last name (which I thought was great and made the appointments tolerable), and she said, "Roma, I think you are an excellent candidate for exploratory surgery. I think you have endometriosis". The next week, I underwent laparoscopic surgery and was diagnosed with stage 4 endometriosis. They removed as much of the cysts and endometriosis as they could. I was pain free for a week. One week. This time, the endometriosis was pissed off. It came back worse than before and ravaged my body. I couldn't eat (everything made me sick). I lived off of prescription painkillers. I didn't sleep for days on end. To top it off, I was injected with depo Lupron, medically inducing menopause in an effort to "dry up" my endometriosis. Instead, on top of the intense pain and misery I was in, I could now add hot flashes and night sweats to my list of complaints. Oh, and I was trying to go to school full time by this point and work two part-time jobs to pay for all of my treatments and co-pays. Finally, I broke down and told the specialist to take everything if he had to (still my mentality) if it means I don't feel like this anymore. Actually, I was dramatic and told him if he didn't operate, I was going to do it myself. So, on March 6, 2000, at 83 pounds (told you I couldn't eat), when all of my classmates were beginning the first day of spring break of their senior year of college, I was wheeled in for a laparotomy. That's a side to side abdominal incision for those who haven't experienced this. Endometriosis was removed from about every conceivable body part in my abdominal region, plus they had to take my right ovary and fallopian tube. Amazingly, they discovered I had a tumor in my appendix as well, something my diseased ovary had been hiding. I felt so much better after my surgery that I didn't even take the morphine drip in recovery. My quality of life improved that immediately. 

For more than a decade, I was extremely lucky that medicine, diet and exercise kept my endometriosis at bay. About a year and a half ago, that changed. I began running more and trying to get in better physical shape. After my long runs, I was getting extremely sick to my stomach - to the point where I couldn't do anything for the rest of the day. If I ran a race, I had to immediately go home while everyone else stayed for post-race brunch or after parties, because my body shut down. Then, and my apologies because I know this is TMI, but I began experiencing excruciating pain going to the bathroom (you know what I mean) and passing blood (so sorry for that visual). And too much blood to excuse it away. Yet I did. I had had endometriosis excised from my bowels in the past and just knew it was related and wasn't wanting to deal with any further surgeries or testing. Then, I ran a five miler. My time was great. I was thrilled. Per my routine, I went home immediately and waited to get sick. And I did, and I freaked out. The toilet bowl (my apologies again) was blood red. I couldn't deny any longer that I needed to see the doctor. Still, knowing everything I know, I tried to minimize my symptoms at the appointment. Despite my best efforts, my specialist explained that my bowels were fusing to my reproductive system. In a healthy person, bowels relax during exercise, like running. Mine can't, which causes me to get sick after I'm done and my body begins its recovery. And then he prescribed a colonoscopy, to be done right away to eliminate cancer. Cancer? I was terrified, particularly as a dear friend had passed away from cancer not long before this occurred. Being alone, I had to call my parents and ask for help. Someone needed to be with me afterwards, and I needed help with my dog. I like to act like I can handle everything on my own and don't like asking for help, so this also meant I had to tell them all about the symptoms I'd been experiencing and ignoring for about a year. Fortunately, the worst part of the colonoscopy was the prep, and two biopsies came back clear. No cancer. However, blood work done before the procedure showed that I have virtually no stored iron and was extremely anemic. I needed iron infusions and continue to take iron supplements. This immediately took care of symptoms I was again chalking up to endometriosis - migraines, fatigue, etc. A bone density screening also determined that the years of hormonal treatment had been causing some of the injuries I was experiencing, like stress fractures.

Emotionally, I'm never sure how to explain how I feel. I'm 40. I'll likely never have my own children. That sucks to know, but I'm realistic about things. It can be a bit depressing to think that at age 23 (when I still had hope), I assumed I'd be married with kids by this age. My twenties weren't bad, because my friends were finding their way in life, too. My thirties were strange, as I've watched everybody get married and start their own families. Despite that, I'm happy and think I have a pretty good sense of humor about life, including endometriosis. I love my job, have great friends and am a mom... To a really cool dog who thinks I'm pretty awesome. It does get easier, but man, it's really hard, too. When I was diagnosed, people didn't talk about endometriosis. Padma Lakshmi and the EFA were non-existent. There weren't support groups. Now, it's so odd to pick up US Weekly or People and see that Lena Dunham or Julianne Hough are discussing their endometriosis. Celebrities put a public face to what we are going through, but we need to share our stories (if only for our own peace of mind) and raise awareness. I have been able to talk pretty openly about my experience, and recently watched as a friend was diagnosed herself, and being able to answer questions and offer advice made me feel like going through this was worth it in some way. My best advice is to be your own advocate. We know our bodies better than anyone. If you feel off, trust your gut and find a doctor who believes in you. Most of all, hang on there. You're not alone!


Thank you for sharing your story Laurie.

If you would like to contact Laurie, you can follow her on Twitter @laurieroma or on Instagram @larroma.

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, 6 November 2017

Trust your instincts when it comes to your health

Image courtesy of http://bit.ly/2n9676z

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


Having lived with the symptoms of endometriosis for around 21 years now, 12 of those diagnosed, I’ve had my fair share of moments where I’ve felt that things do not feel quite right with regards to my health. Times where I’ve questioned a diagnosis or even reeled things off to doctors that I suspect might be happening with my health. Times where I’ve been told to stop Googling symptoms and asking so many questions. It can become disheartening, especially when you want answers or if you are chasing a diagnosis.

I want to use one occasion as an example. In around 2009, I began to experience pain in my right shoulder. It hurt, it ached, it made it difficult to move both my arm and neck because of the pain running up and down them, and it made me feel sick. It was a deep, gnawing pain that made you want to dig your fingers into your shoulder blade, much like when you dig your tongue into an aching tooth. I initially thought I had been sleeping in an odd position but, I started to notice that it only really hurt when I was on my period. When I next saw my doctor, I asked if it could be related. It had to be. However, he laughed at me. He said, it “definitely” wasn’t related. And that was that.

I knew something wasn’t right and I was in pain with it every month. Sometimes, it would randomly start hurting when I wasn’t on a period too. I made sure to mention this pain to my specialist as soon as I saw him for my next check up at the hospital. After all that time, I was still a little taken aback when he said that a pain in your shoulder area could indicate diaphragmatic endometriosis. He told me that he had previously checked my diaphragm and that it was clear of endometriosis but he would check it at my next surgery… Which he did, and there it was: dots of endometriosis. The reason behind all these pains.

However coincidental the pain seemed to be, I always thought that it couldn’t be endometriosis. I mean, this pain was in my shoulder! It was about as far away as it could get from the normal abdominal pains I was so used to. And, at this time, I still was pretty lost when it came to endometriosis. I had only been diagnosed for 4 years and I still didn’t know much about it all. I was yet to find the amazing support system of online 'endo sisters'. But, I knew my body and I knew that doctor was wrong.

I still have moments where I feel anger towards him. How many other women had come to him with issues linked to menstruation and had been laughed at? How many other women had he let down by not listening to them? But, he did teach me one thing and I believe it’s one of the most important things for any woman with endometriosis to know: follow your instincts.

Listen to what your body is telling you. If you are dealing with discomfort on a regular basis, look for a pattern or make a note of when that pain is happening. Is it coinciding with anything else? Is it coinciding with your period, per chance? Ask questions - not only with your health practitioners but ask women online if you can. Scour the internet for clues. If I hadn’t asked, if I hadn’t have followed my own instincts, I would probably have never gotten my answer. And, remember this, no one knows your body better than you. No one else knows how you are feeling and I would assume the majority of our own doctors have never had endometriosis so it’s as much our job to educate them as it is for them to educate us.

Speak up and be heard ladies and get your answers.

You can follow my Endometriosis News column here.

S.
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Wednesday, 1 November 2017

My story: Barbie Maguire



My story is probably the same as so many others but I wanted to share mine. As many others, there is a lot of pain, tears, pain pills, heating pads, missed days and everything else that goes along with the horrible disease that we know as ENDOMETRIOSIS.

Growing up periods were just so painful for me. My mother didn’t really give anything a second thought and she would tell me to just get over it and she would give me a Midol and tell me that I would be fine, however, 9 times out of 10, the Midol made me sick and I would just be in such pain that I would sleep all day and cry when I was awake because the pain was that bad. It wasn’t until I moved in with my grandparents at the age of 14 that someone actually listened to me when I said I was in so much pain. My grandmother would let me stay home from school the first few days of my period because the pain was just unimaginable. No one really ever thought that there might be something wrong, they just all assumed that I was one of the unlucky ones who had pain with their periods, if they had only known the road that was ahead. For as long as I can remember, I have never had a period that wasn’t just extremely painful. I was 20 when I had my first cyst rupture, or at least it was the first one that the doctor told me about. I was on the Depo shot at the time and it happened at work. I doubled over in the kitchen and had to have my mother come take me to the hospital. I had just had my gall bladder out a few months before and they were afraid that my appendix was acting up. I got to the hospital and they tell me that I had a huge cyst rupture, I had no idea what any of that meant. They changed my birth control and said I should be fine.

July 2005 was the worst month of my life. I ended up bleeding for 26 days and it wasn’t like I was just spotting, I literally thought I was gonna need a blood transfusion. Saw my doctor and all she said was that stress can cause lots of problems, so try to distress your life. Fast forward to July 2006 and I just had it. I had fell into a deep depression because I was just so sick and tired of living my life in pain. I wasn’t on a steady birth control because I didn’t know what was going on and I was missing work left and right (really surprised I didn’t get fired). My grandmother finally stepped in and made me make an appointment with a different doctor and she even actually took me to the doctors appointment. Imagine being 24 and having your grandmother take you to the doctors office, I was horrified!! My sister had been diagnosed with stage 4 a few years before me and had undergone multiple surgeries before this and had already started one round of Lupron. I had talked to her and didn’t really think much of the endo because we didn’t have the same symptoms so I just really kinda blew it off. When I was at the doctors office I told him about my history and about my sister and he tells me that I had about an 85% chance of having the endo. He did an exam and an ultrasound and told me that my left ovary was just covered in cysts and that my right ovary had 2 rather substantial size cysts on it. Low blow is exactly what I was thinking. He told me he wanted to do surgery because he knew I was going to have endo. We scheduled the surgery for 6 weeks later and even up to that point, I really didn’t think I was going to be diagnosed with endo. Sadly I was diagnosed at Stage 2 and PCOS. I was immediately put on Lupron and endured 6 months of hell. That round of Lupron was absolutely brutal and my first period after the Lupron was the absolute worst one I have ever had. I was in so much pain, that I almost went to the emergency room because nothing was helping with the pain, the doctor even told me to go to the ER. They put me on a new birth control and the same cycles continued over and over again. I eventually gave up on the doctor after he told me that I probably wouldn’t have kids and just gave up in general.

A little over a year later I had another cyst rupture that landed me in the ER yet again. Once again I was at work when it happened and had to have someone rush me to the hospital. I was home for a week in such horrific pain that I ended up making 2 trips to the ER that week. Now I’m not one to take pain pills because my family has a lot of addicts in it, so for me to ask for pain meds is serious and it means that the pain is off the charts. I ended up finding another doctor and begged for a hysterectomy. She told me that she wouldn’t do that because I was only 26 and I hadn’t had kids yet. We scheduled surgery after she found a large cyst on my left ovary and during the pre-op appointments I made it clear that I wanted everything out, so when I signed my consent forms, I signed for an emergency hysterectomy if need be. The cyst on my left ovary ruptured before the surgery and a large cyst had grown on my right ovary before the surgery. Sadly when I woke up, I realized that everything was still inside, I wasn’t granted an emergency hysterectomy. I felt OK for about a month or so and then the pain came right back. I was put on a continuous birth control and she hoped that it would prevent me from having a period, but that wasn’t to be the case. Just a little over 2 years after I finished my first round of Lupron, I was put on it again to battle the endo. The second round wasn’t nearly as bad as the first, but being only 26 and having gone through menopause twice was just frustrating.

I have tried just about every birth control out there, many different types of pills, the shot, the ring, the patch and lastly the Implanon. When I got the Implanon, she said that most people don’t have periods on it but that wasn’t the case for me. I had them and they were still just as painful. I had my third surgery in December of 2011 and nothing changed. The pain I had after the surgery was not from the surgery or the recovery process but from a period that came 2 days after surgery. It was absolutely heart breaking to know that the pain came back so quickly after surgery. When I went back to my doctor she referred me to a fertility doctor that specialized in endo. He started out so well and then he told me about some crazy surgery he wanted to do. He told me about a surgery in which he could burn the nerve endings in the base of my cervix that would alleviate the pain. At first I was all about having the surgery because he told me that I wouldn’t have anymore pain. When the insurance company denied coverage for the surgery I realized that I needed to get a second opinion. I spoke to my other doctor and she told me that it was a horrible idea and so I decided that I just wasn’t ever going to get any relief.

June 2012 the doctor told me that she would be more willing to give me the hysterectomy that I wanted because I had turned 30 and she was afraid that the endo had moved into my uterus muscle and that there was no chance of fixing that problem. I told her that I had a time frame I wanted to wait out if I could and that was the last time I would see her for seven months. That was the longest time that I went without seeing her, I was getting used to seeing her and her staff because it really felt like every other month I was getting an exam or an ultrasound to check on things. January 2013 everything fell apart. I had been living with some extreme pain for about a month and finally had enough and made an appointment to be checked. I had an ultrasound and found out that I had two large cysts, one on each ovary and she told me I needed to start thinking about my future. I did a lot of soul searching that weekend and I have blogs up on my blog page about all the thoughts that went into my decision. My first appointment was on a Thursday and by Monday my hysterectomy was scheduled for April 3rd. I finally just gave up the hope that biological kids were ever going to be in my future. I learned from the fertility doctor that my egg reserve was really low and that I would have to go through IVF if I wanted to get pregnant and even then I wasn’t promised a baby. My sister was adopted as a baby so I realized what adoption could do for a family. My sister also had to go through IVF to have her miracle baby and knowing what she went through, there was no way I was even going to attempt it.

After my hysterectomy I realized that I made the best decision that I ever could have made. I learned that my one ovary was stuck to my bowels and the other was stuck to my pelvic wall, this was what was causing me so much pain for the last few months. Scar tissue and new endo growth had done so much damage to my ovaries that the doctor was really surprised that I didn’t come in sooner. During my post op appointment I was told that there was a rather large tumor on my left ovary and that eventually I would have had to have everything taken out regardless. Luckily the tumor wasn’t cancerous but it still scared me to hear that. I also found out that the endo had impacted my uterus muscle and that ADENOMYOSIS was eating up my uterus and my chance of having a biological child was non-existent.

Now I’m figuring things out about menopause as I go and dealing with finding the right hormone for me. Now instead of living in pain I feel absolutely amazing. I had some minor cramping for a few weeks and the doctor told me it was normal since my body is adjusting to having organs gone and not having real hormones. I made the absolute best decision I possibly could and don’t regret it one bit. I love not living in pain and not having to worry about pain pills or heating pads or anything else that I dealt with before my FINAL surgery.

One thing I said before my surgery is that I was ready to live the life that I was meant to live instead of living the life that held me back because the pain was just so intense and would ruin my every day life. I am almost 2 months post op at this point and have never felt better. It's weird to not feel pain every day and I just absolutely love my new outlook on life, praying that the horrible endo is gone forever!!!

I started this blog 2 months after my hysterectomy in 2013 and I know that things have definitely happened since then! Three months after my hysterectomy, I met the man I thought was going to be my forever. Instantly I felt like I had made a mistake about taking everything out. He so desperately wanted to have a child and I wasn’t able to. Luckily we talked about everything and decided that we would adopt after we were married because that was the only feasible thing for us to do. Sadly our relationship didn’t work out but the desire to be a mom hasn’t changed, maybe one day I’ll get to experience the joy of motherhood.

Over the last 4 years my body has gone through some CRAZY changes! I have gained weight, lost my smile, lost myself and have somewhat tried to forge ahead in the journey of life. The first thing I noticed after my hysterectomy was the fact that I was CRAZY with emotions! Things that never would have affected me were all of a sudden making me cry at the drop of a hat! It was absolutely unreal how much I changed when they took out my ovaries. I have had to try multiple hormones and four years later I am still trying to find my balance.

Hormones are no joke, they rule your life. The first pill I tried right after surgery sent my blood pressure skyrocketing and the doctor was concerned. I was quickly changed over to a patch and that was a rollercoaster for a year. My poor doctor has gone through so much with me and I am so very thankful that she never gave up on me! My patches were changed twice and the last patch worked for about six months. I lost weight, my hot flashes were under control and I felt great, then there was a lot of personal stuff that happened and I plummeted into a depression that I am still trying to get out of. I have since had to have my hormones changed three more times and I still don’t think that they are under control. My body is completely HOT all the time, I sweat when its 20 degrees outside, no joke! It's super cold outside and I’m sitting inside with 3 fans on in my room, a tank top and shorts! I can’t win, I really can’t. My grandmother warned me about having my ovaries out but I honestly didn’t think it would be this bad! Boy I was wrong! Not only do I have to worry about getting my hormones under control, I now have to take anti-depressants, anxiety meds, allergy meds and blood pressure meds! Things really did change after my hysterectomy! I don’t regret having my hysterectomy because honestly, I’ve had 4 years of very little pain. I cramp every now and then and sometime freak out thinking that there was something left behind, but for the most part, I’m good with everything. I made the decision I did because I was tired of living in pain. I was tired of taking pain pills, living with heating pads, frequent doctor visits and countless surgeries. I made the decision that was best for me. Now I’m learning to live on fake hormones and countless other pills that I now have to take! Guess you give up one pill for another in this journey! I don’t miss dealing with endo and I would never, ever wish that on my worst enemy. I wish there was more spoken about endo and more people were open with their battle. When I was struggling there wasn’t anyone I could turn to. My sister had it and we would compare notes all the time but it got to the point that that was all I had in common with her and it severely affected our relationship.

I have some blogs posted that I wrote during the time that I set my appointment and had my surgery and they are there for anyone to read if they are interested. I questioned a lot leading up to my surgery but still to this day, I don’t regret having my surgery!! By far the greatest decision I have ever made!!


Thank you for sharing your story Barbie.

If you would like to contact Barbie, you can follow her on Twitter @barbiejmaguire, Instagram @keepingupwithbarbie, or through her blog, My New Journey.

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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