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!


Monday, 13 November 2017

:: COLUMN :: 10 things you might not understand about endometriosis

Image courtesy of https://endometriosisnews.com/2017/11/13/endometriosis-explained-10-things-you-might-not-understand/
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.


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.


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.


Monday, 6 November 2017

:: COLUMN :: Trust your instincts when it comes to your health

Image courtesy of https://endometriosisnews.com/2017/11/06/endometriosis-health-trust-your-instincts/
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.

Have you ever had an experience like this with a doctor?


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.


Monday, 30 October 2017

:: COLUMN :: Endometriosis and infertility, part 3: 10 tips for surviving

Image courtesy of https://endometriosisnews.com/2017/10/30/endometriosis-infertility-part-3-10-tips-for-surviving/
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.

This is the final part of my Endometriosis and Infertility series - you can read part 1 here and part 2 here.

I really hope these columns have helped some of you. They've been so difficult to write (particularly last weeks where I spent most of the week blubbering every time I opened my laptop to work on it!).

If you have any questions about our infertility journey or just want someone to chat to about it all, please get in touch!


Wednesday, 25 October 2017

My story: Sarah Dunwood

Some days my pain is so excruciating that it takes every little last bit of willpower I have to drag myself out of my bed and face the world. Those days used to be a few out of every month, now those days are every day. I know the cause of my pain. I know what the solution is. I know when that solution is coming and it is only a few weeks away, but time seems to somehow dilate and those few weeks seem as far away as the stars and planets that I stare at on those few cloudless nights we have in the grim north!

So here is my story. Long and tedious it may be, but it is my story nonetheless and it is time that I put it all down in one place.  

I am nearly 40. I feel it. In fact, add another 20 years on... That's how I think I feel. This state of mind is not normal for me but it has been the status quo for over 2 years.

You see I, like many other women, have a condition called endometriosis. It is often a silent condition that goes unnoticed and can often cause very few symptoms. It is frequently misdiagnosed and from my research, it can take many years for a firm diagnosis to be achieved and treatment to be secured. In the meantime, that long wait can cause untold damage, not only physically, as in my case, but mentally and emotionally too.

Rewind 21 years. I was at university. I was not a social butterfly, not confident as such. I certainly didn't get overly involved in the social scene at uni. I got on with my work, attended my lectures, occasionally went to the Thursday night 'disco', but really, kept to a small group of friends who I met. Why?

Every few weeks I would be plagued with horrific period pains. Pains that rendered me speechless. Doubled over. Often fainting. It was embarrassing and terrifying and I really didn't want to be around people when that happened.

I had investigative surgery - a laparoscopy and hysteroscopy and nothing was found. The results were duly sent to my GP who tactfully advised me that with most 'women's problems' they were resolved with pregnancy and maybe I should consider having a child. REALLY? 19 years old, 1 year into university, a career as a teacher planned out. Quality advice there.

I learned to live with it. Hiding usually worked. But at least back then it was limited to just a few days a month.

I got older, I got married, I had my one and only child when I was 27.  

Prior to my pregnancy and for a few years afterwards, I used the contraceptive pill. My pain, bouts of fainting and such like disappeared as such - certainly they were not a monthly focus for me and so there was a significant chunk of time where I did not think of it. I thought of other things instead... Particularly the dawning realisation that my marriage was an epic disaster (but that is another story).

My marriage ended. I met someone new. Life was sweet.  

I came off the pill aged 35. February 2008.

In October 2008 I went to see my GP - I had trouble getting comfortable at night. If I slept on my left side I felt like something was pressing on the inside of my pelvis, if I rolled onto the right, I had a horrible dragging sensation. I needed to go to the toilet with the frequency of an older man with a prostate problem. The pain was back, but not the fainting. Still, it was focused to a few days, each month.

I was sent for an abdominal ultrasound, which showed nothing. I know now that for my condition, it wouldn't have showed anything. Nothing there, nothing is up with you. Pretty much. I was told it was probably IBS (Irritable Bowel Syndrome) and to watch my diet.

Time passed, a proposal came, a wedding was planned. We said our vows in April 2010 and neither of us expected that "In sickness and in health" would come to pass quite so quickly.

A few months later I was recalled following a smear test. Abnormal cells. Colposcopy. That was pleasant.

Then, less than a year from our wedding, I returned again to my GP - I was exhausted, constantly. Hot flushes some nights. Frequent sleep disturbances and a persistent nagging pain in my pelvis that caused me to be fidgety, uncomfortable and distressed for much of my time. The pulling/pressure sensation was back with a vengeance and MY GOD - the PMT and subsequent few days were just horrific.

Early menopause I was told.

Menopause doesn't cause pain. No matter. A symptomatic approach is taken to diagnosis I was told. My symptoms indicated menopause.

Some days the pelvic pain would change, become acute and it really started to impinge on my daily life. I tried to manage. It's difficult when you are a teacher. Doubling over in pain and howling is not considered good form in the classroom - not if you are the adult anyway!

I returned to the GP - saw someone different - and was referred again in October 2011 for another ultrasound.  

Yep, you guessed it - nothing there. Aside from the fact that they didn't do a pelvic but did an abdominal, the ultrasound was not going to show my condition (that I didn't yet know I had).

At my wits end, my GP decided to refer me to a consultant gynaecologist at my local hospital. However, I had to wait and go through 8 weeks of pure hell before my GP was allowed to make the referral. Peer review within the surgery meant I would not be referred unless I first consented to taking the mini pill for 3 months.

No choice.

After 10 days, I started bleeding. I bled for 42 days straight. I was exhausted, suffering from extreme mood swings and what I now understand was depression. I once considered that maybe it would be better if I wasn't here. Just once. THAT was enough and I stopped taking them and demanded my referral. I got it.

I thought an end was in sight. My family and friends rallied and supported and we all looked forward to finally knowing, having an answer and therefore being able to do something about it.

I attended the appointment. The consultant was 30 minutes late for the first appointment of the day - mine. She rushed in, didn't listen, made a miraculous diagnosis without so much as an examination, told me that she was going to adopt a particular cause of action - a treatment - and that we would have to wait at least 6 weeks for that to take place, and another 6 months for it to settle and see if it resolved things. It did not seem to matter to her that what she was prescribing as (in her words) "a miracle cure" was not for the symptoms that she was PRESUMING but that I did not have. This rush job was topped off with an cervical biopsy which was agony and frankly unnecessary, having only just had my annual smear test two months earlier. I was dispatched for blood tests and left feeling shaken. No mention of diagnostic surgery. Just treatment. For something that manifested itself differently than the symptoms I had.  

That same day, when I had regained my composure, I contacted another consultant gynaecologist and arranged for a private appointment a few days later. I needed a second opinion.

Thank goodness I did.

I explained all of this. I was told that the only way to really assess what was happening was laparoscopy. I felt better for knowing that my distrust and anger at the treatment in the previous week was based on my own good understanding, not just a reaction for the sake of it. The consultant contacted my GP, she referred me to him and I was back in the system.

The answer came in October 2012. The cause of my pain is scar tissue. Not just little bits, but effectively the equivalent of an extra womb in my pelvic area. My left ovary and fallopian tube are encased in the scar tissue, which has also encroached into other areas and has headed towards my left ureter. That, combined with extensive endometriosis, means that my pain is unsurprising and, to my relief, very very real.

The sadness is that if all of this had been spotted somewhere earlier along the way, if it had not been masked for many years by the contraceptive pill, if I had been referred sooner, seen a different consultant on a different day, then I might not now be facing the daunting prospect of a full hysterectomy, along with the removal of the ovary and tube that is now dead and potentially the other one if it isn't healthy. I wouldn't be waking in the night in a cold sweat dreaming about all of the terrible things that could go wrong. I wouldn't be so consumed with chronic pain and acute attacks at random times that going to work everyday is like climbing a mountain and worrying about getting back down again. I wouldn't be agonising over the time that I am now having to spend away from my students, about colleagues having to step in for me. I wouldn't feel so desperately guilty about the time that I have not spent with my husband and my son in these last two years. I wouldn't be considering writing letters to my loved ones, just in case. That in itself is a terrifying thing to admit that you are considering.

In 6 weeks, exactly 6 weeks today, I will be coming round from my surgery. I hope that it will be the start of me becoming me again.

I don't like what I have become.

Sarah kindly sent me some updates to her story....

Update number 1: 6 weeks on.
I have now had my surgery... I'm 5 days post hysterectomy. Along with a pile of other procedures including excision of the endometriosis, removal of left ovary and tube, right tube and removal of a pile of scar tissue from the endometriosis and peritoneal disease. Interestingly, even though I am post op, I feel so much better!

Update number 2: 4 years on.
Since 2013, I have had 3 further surgeries. After a few months pain free, my pain started to return. So, I have had 2 excision surgeries and then, last summer, just over 3 years on from the hysterectomy, I had my remaining ovary removed. So, for 14 months I have been in full blown menopause. It’s not great, but it’s better than pain. However, I have developed an as yet undiagnosed autoimmune issue - waiting for my rheumatology consultation at this point. My GP thinks it may well be as a result of the years of pain, surgery, medication etc. Still, it’s not as bad as how things were for me before 2013, so there’s reasons to be positive, even now. 

Thank you for sharing your story Sarah.

If you would like to contact Sarah, you can follow her on Twitter @hebs1973.

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.


Monday, 23 October 2017

:: COLUMN :: Endometriosis and infertility, part 2: post-baby

Image courtesy of https://endometriosisnews.com/2017/10/23/endometriosis-infertility-part-2-post-baby/
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.

This is the follow on to last weeks column and it's probably been one of the hardest things I've ever written.

... Have any of you felt the same?


Friday, 20 October 2017

Hug reusable wraparound heat pack

I was contacted a few months ago by the lovely Fiona over at Hug and asked if I would like to try one of their reusable heat packs. Now, you know me, I love anything that's even a smidgen like a hot water bottle, so of course, I jumped at the chance!

Here's the important stuff...

So... What is Hug?

Hug was created by product designer Fiona Bennington and is a wraparound, wearable heat pack that adjusts to different waist sizes. It is filled with pearls suspended in a gel liquid. You can wear Hug directly against the skin as it has a velvet lining that doesn't stick. It is discreet, practical and doesn't feel heavy to wear.

Hug is designed to offer soothing comfort for a variety of ailments, including:

  • shoulder/neck relief
  • stomach/back pain
  • shoulder pain relief
  • c-section recovery
  • period and pelvic pain
  • migraine relief
  • headache relief
  • back/spinal relief
  • breast pain relief
  • joint pain

... But, it can also be used to simply keep you cool on hot days, or warm on cold days!

How to use your Hug

Hug can be used warm or cold. For a cooling sensation, simply pop your Hug in the freezer for an hour. For a warm Hug, simply microwave as shown in the video and diagram below.

There isn't any other way of heating Hug - please be aware of this if you don't own a microwave!

Hugs temperature is dependent on you. However, there is a warning indicator on the heat pack which changes colour at 45°C and personally, I wouldn't heat it anymore than the recommended amount. Plus, you can heat it again as soon as it has cooled.

How to wear your Hug

You can see the range of ways Hug can be worn, here.

Hug adjusts to different waist sizes with easy to use velcro straps. It fits from an 80cm waist up to 111cm which is similar to a UK ladies size 8 up to a size 20. Hug also offer a reduction strap for sizes below 80cm, and an extension strap for sizes beyond 111cm - both of which can be purchased separately to the heat pack.

The video below will show you how to wear and adjust your Hug.

Why should I try Hug?

Low level heat therapy has been proven more effective as pain relief than over the counter pain killers, and much better for your body too!

Where can I get a Hug?

You can purchase the heat pack, accessories and gift packs from Hug's online store, where, currently, they are including a free gift with every purchase if you shop with them directly. Alternatively, you can purchase the heat pack alone on Amazon. The Hug website also offers international (for outside of the EU and UK) shipping.

Anything else I should know?

You can find more information on Hug via their website or by visiting their Twitter or Facebook pages.

Hug recently took home the first prize in the Engineering category at the Invent 2017 Awards so it's now an award winning product!

The story of Hug was featured on BBC Radio Ulster on Tuesday 17th October 2017 which you can have a listen to here if you are in the UK - flick through to 15:55 if you don't want to listen to the whole show! Their story will also be featured on the BBC1 Made in Northern Ireland series on Monday 23rd October 2017 at 7.30pm. If you're in the UK, you can watch it on the BBC iPlayer - just find the episode (series 2/episode 4) under the 'Northern Ireland' category.

Sounds good, doesn't it? Well, it is good! 

I love a hot water bottle or my beloved (electrical) heat pad, but they aren't practical if you are moving around or need to leave the house. Hug is the answer! It's wearable and fully adjustable so it won't fall off or hang loosely. It sits reasonably discreetly too, though, obviously, it will show if you are wearing a skin tight outfit - you could always wear it on top of your clothes though and show it off!

I really love that it wraps right around you, meaning the pain is covered from all angles. This is great for endometriosis pain because, if you're anything like me, when my tummy hurts, my back hurts too (what doesn't hurt!?). I also loved the way it feels - the little pearls are really soothing and give almost a massage type effect. It's quite satisfying to fiddle with when it's cooled down too!

Hug is fully reusable which means, once you've bought it, that's it! No running out when you need it. No not being able to get to shops to get some more. No more cost.

I also liked that it has instructions printed directly on the heat pack, so, no trying to find loose instruction papers all the time! Having had a run in with a gel hot water bottle in the past from which I have a lovely scar on my leg from where the hot gel leaked out, I'm quite a stickler for when it comes to instructions for this type of product. The warning indicator on the heat pack made me feel reassured but, I have to say, the edges of Hug are really well sealed also.

So, that's my opinion!... Would you like a chance of winning a Hug all for yourself? Head over to my Instagram and find out how!