Monday, 31 December 2012

Pre-assessed and ready to operate.

Image courtesy of http://chibird.tumblr.com/
Well, well, well guys and gals, this is my last post of 2012! I was going to leave it until next year to update you on today but then I found this cute little picture which I decided must be put to use!

After all that's happened this year, it's been a tough one but the last few weeks have flown by - even though those were the few weeks I wanted to go slowly! I certainly won't be sad to say goodbye to this horrible year.

I had my pre-assessment this morning. It lasted 3.5 hours which is the longest one I've had to date. It seemed like I was being tested forever! But it's all done now. Everything was OK, apart from the Prof. had requested that I have my bowels prepped! He had mentioned after my last surgery that I was very constipated but that's all been down to my Tramadol. So, for the 3 days before my surgery I have to take two Senna 7.5mg twice a day and follow a special diet. On Saturday I am allowed a limited amount of food, all basics like white meat, fish, bread, pasta etc and a limited amount of milk. Sunday is the liquid diet day, so my meals have to consist of clear soups basically. But, Monday is going to be the killer! No food at all! I can have beverages though which includes cups of OXO gravy but apart from that it's black teas or coffee (no milk allowed), water, or fizzy pop. And then, of course, pre-op on Tuesday I now won't be able to have even a basic breakfast and can only have sips of water!... I'm going to waist away!!

So, that's it now. I am all prepped and ready for my operation. I even nipped in to town after getting out of hospital and bought some new baggy night wear and a snuggly new robe. I'm super, super nervous especially for the anaesthetic (after what happened last time) - really, I'm just looking forward to being allowed home so my mummy can look after me and I can be with the boy, my daddy-o and the pusskins. Then I can relax properly with all my creature comforts around me. Writing this now is making my stomach turn. I really am so frightened. I'm in good hands though and it's just for a few hours then I can concentrate on getting better. I will be OK and I just have to remember that this is going to fix me.

I'm off now anyway. I'm going to have a little disco nap before going out tonight and generally just laze around for the next few hours. I need it after the early start this morning and the fact we barely got any sleep last night due to the boys weirdo neighbour doing his voodoo chanty things and running and jumping around at 04:00am... I'm not even joking!

Anyway, I said it before, but I hope you all have a super duper new years eve. Be careful kiddos and plan time for some rest before and after any celebrations.

2012. DONE.

S.

My story: Emma Cusick.


When I was 13 I begin my journey. I was on holiday with my family in Italy in a quaint little villa and then the reality of being a teenage girl strikes and I had my very first period. It was very heavy and very painful. Over the next 7 years this would be become my norm - as would countless visits to the doctors. All through my teens, I go to my doctors with period pain that can only be described as agony, along with recurring yeast and water infections. No input as to why these things where happening.

Anyway, fast forward 6 years to October 2011. I’m in my first semester ever of university, I am 150 miles away, I begin to experience a lot of pain which should not have been there as my period wasn’t due. The pain would then persist till this day. I go to my doctor at university again and again till November she diagnoses me with bacterial vaginismus - she gives me antibiotics and sends me away. 2 days later the pain has become worse. I go back to my doctors, I get told it’s probably the antibiotics and to stop taking them. I stop taking them. That night the pain becomes excruciating so I ring my mum. She and my step dad drove down to get me and take me home, however we didn’t make it home - we ended up at Addenbrookes Hospital. Within an hour of being there and taking my history, the gynaecologist gives me a working diagnosis of endometriosis. I come home, we see my gynaecologist and he decides to do surgery. I get a surgery date for April 2012. So I get on with uni the best I can until then. I have the surgery and I finish my first year at uni still never fully feeling the benefit of the surgery.

August 2012, I go back to my doctor (after a trip to A&E) and he refers me back to my gynaecologist (I felt like a pinball). I see one of his staff, and she tells me I’m going to have Zolodex treatment. Fast-forward 3 more months, in my first semester of my second year of uni - I’ve had the Zolodex injection and ever since been in excruciating agony every single day. The treatment isn’t helping, I’ve been on more drugs than I can count and I’m straight back into hospital.

My university work is suffering and so are my romantic and family relationships. My doctors have given me no information as to what their plan is. I’m popping so many tablets I’m rattling. I feel alone, misunderstood and worthless. This was meant to be an inspiring post, but then I started writing and thinking about it. I am 20, I’m at uni, I can’t go out clubbing, my boyfriend and I can’t make love, I may not be able to have children and every single day is a struggle against my endo, myself, my emotions, my body, my mind. Endometriosis is ruining my life.



Thank you for sharing your story Emma. It really saddened me because I've been through the same things (minus the uni part) and I know how difficult it was when I was your age. Probably even more difficult than it is now. I hope you manage to finish university and find a treatment that works for you so you can have some sort of 'normal' life. I can totally relate to how hard it is having your life taken away from you when you are in your 20's - when you are supposed to be living it up to the fullest.

If you would like to contact Emma, you can follow her on Twitter @Emzycidical.


Can anyone relate to Emma's story? Are you in university or trying to get through studies with the pain of endometriosis? Does it make you feel alone and worthless? Have you tried Zolodex and has it worked for you?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read.


S.

Sunday, 30 December 2012

Round round get around i get around wa ooo

Image courtesy of http://escherdax.wordpress.com/2011/04/25/minds-like-sieves/

Just two things, before I forget to mention them (I have a brain like a sieve!)...

The lovely Heather from Hello, Endo! has featured my story on her blog. You can have a look here - go on over and have a read!

Oh, and the Endometriosis Library has moved! It's no longer on the side of the blog... It's now got it's own special page! You can view it by clicking on the Endometriosis Library tab above - below the blog title at the top of the page. Let me know if you know of any other links that should be added!

S.

Saturday, 29 December 2012

TV and chocolate time.


First and foremost, I hope you all had an absolutely wonderful Christmas and got lots of lovely pressies and ate lots of scrummy (un-healthy) food! I had a lovely Christmas with my family and friends. That's all I really wanted - to spend time with everyone.

I've just about recovered from the madness of it all now. Christmas Day was a little crazy - driving all over the county to see people - and by Boxing Day I was definitely feeling it. So much so that I spent the entire day in front of the TV... Eating chocolates! I felt so much better for having rested though. I was getting terrible pains from rushing around so much so the best thing I could have done was nothing!


Today the boy had to drive my car in to town to get it MOT'd and unfortunately it failed so it spent the day in the garage being fixed. So that meant we were a little stranded and we ended up having to get the bus back which meant a bit of a walk. I'm in quite a lot of pain today and I know that didn't help. I've been having different pains this last week - still all the usual things around my left hip but now a pulling feeling from my bum to my left leg that especially tugs when I walk. I'm just assuming something else is stuck to something else again. It's a horrible feeling though. Not the normal sharp pains - it just feels strange!


I'm so ready for this operation now. I feel exhausted with the stress of everything and I just want it over with. I am still trying not to think about it all but I do keep finding myself getting upset. It doesn't help that I see so many women putting laser surgery down so much saying it doesn't work and excision surgery is fantastic etc etc etc. A lady said it to me tonight and it's just such a rubbish thing to say to someone when they have been in this situation and have waited so long for any help possible! I know excision surgery is better but it's not even an option for me at the moment. I am having a surgery that didn't work for me first time around but hey, it's something. It's certainly going to be better than not being able to have any sort of life. But hey ho, if you can afford all that fancy stuff then that's fantastic for you. Unfortunately I can't because of the situation this disease has left me in. Sorry for ranting a little but it's so frustrating. It makes me feel like giving up on everything because this surgery is rubbish and pointless and a waste of time and I can't afford the expensive surgery so I don't have any choices. When in actual fact I have been trying my up most to be positive about it because this will work and it will give me my life back and get me back to work and will allow me to have a baby because it will get rid of everything forever and I will never have problems again... OK, going a little too far there but you get my point!


You may have seen on my Instagram that the boy got me my Christmas present while we were in town today. We had set a small-ish budget this year as there wasn't really anything we wanted it needed so we decided to be more sensible with our money. But I couldn't find anything I wanted, so, while we were in town today, I dragged the boy to this little antiques shop and he bought me a beautiful 9ct gold diamond and pink stone ring. It's stunning and I'm so happy with it!


Tomorrow we are heading in to the hell that is the Christmas sales! I am dreading it but I want to spend some vouchers that my mama got me. We are taking it as a leisurely shopping trip though - no stressing, just a wander and then a sit down for some food.


I have my pre-assessment on Monday morning so I'm going to have to be up super super early because it's at 08:30am on the other side of Leicester. Just what I need on the one day I'm heading out for a night out! I think I'll have to have a disco nap before celebrating New Years!


But anyhow, yes, I'm off out! It's a very rare occurrence me going out but since I haven't been out since July I thought it'd be nice to get out for a bit. We are not doing anything too fancy, just going to a local pub and sitting in one spot all night but it'll be spent with my friends and the boy and it'll definitely help to take my mind off my op. I may even have a little drink!


I did the blog up a little tonight - changed a few fonts here and there, swapped the layout around and touched up a few bits. I think I like it now but I must do my header soon! It'll only take a few minutes so I don't know why it seems to be taking me forever to get done! Hope you all think it looks a little better though!


I'm off now but I will speak to you all again in the new year. I hope you all have a lovely time celebrating the dawning of 2013 with your loved ones. And I pray the new year brings you all strength, unity, peace and hope - if not with each other then at least with yourselves.


Bye bye horrible 2012.


S.

Wednesday, 26 December 2012

Christmas cat.

This is totally how I am spending my time this week!... I hope you are all having a wonderful Christmas!

S.

Monday, 24 December 2012

My story: Melissa Meyer.


Melissa has a fantastic blog over at Endo Empowered, where she not only blogs about her life with the disease, but also the natural and alternative methods she has found to heal her body instead of surgery and medication. Here, she shares her story...




My story began at the tender age of 19 years of age. I had pain, severe pain and it was just not going away. In a way, perhaps I was lucky. It persisted, until I sought out what was causing it. It took me a year but eventually, I received a conclusive verdict: You have Endometriosis! Well, what a blow! An “incurable” condition, which leads to infertility? Oh boy, could you not sugar coat this in some way? I will settle for honey, stevia or even Agave Syrup!

My choices were presented to me as hormone treatments, drugs to dull the pain and surgery every year and a half. The outlook was more than bleak but I trusted, I trusted in the system designed to help me. A specialist for Endometriosis and over 20 years of experience, he must know what is best for my body. Or did he?

After 15 years of trusting and giving all control over to someone else, I finally started to realise a very important lesson: this was under my control and it was time for me to take over! I was strong enough to deal with this and figure this body out by myself. I could doctor myself and do a better job of knowing what my body needed. It is called intuition and loving yourself enough to trust in your inner voice.

I started with a very basic concept. I started to acknowledge the “fuel” I was filling my body with was somewhat dirty. It was un-pure and it was devoid of nutrients. It was rich, fatty, sweet and toxic. No wonder I felt tired, listless, irritated and sore.

I started with the basics. I added more fruit and vegetables. I cut down on the fatty and rich foods. I started to notice a small difference. So, I carried on adding and subtracting foods, which proved to make me better or make me feel worse. It was an experiment and each food was tested on my guinea pig body. I finally began to feel more in control of my pain levels. Eat the wrong thing and experience pain – it was a simple equation and easy to measure!

This new self-awareness also showed up with other aspects of my life. I started to notice when my heart rate elevated itself around certain people and certain situations. It was mostly confrontation but it presented itself as stress to my body. I began to eliminate these situations and people from my life, slowly and gained a calmer state of mind. I felt better mentally and stronger emotionally. The real Mel could shine and be free and find her true calling!

This journey I have been on has only just started. I have been travelling on a pure, natural road for my Endometriosis, my body and mind for just over 2 years. I feel better than I ever felt doing all of the various hormone treatments, surgeries and various drug combinations. I feel so much more alive and content. Not just in my head, but in my body. I have a focus, I have control and I know how to heal myself.

I believe I got Endometriosis for a reason. I believe I am an angel sent out to help women around the world to find a better way to cope with Endometriosis. Be that from a purely emotional point of view or to gain real understanding of their bodies and how to heal naturally. I am here for you too. I am your little Endo Angel and if you find me, I can guide you towards your own Healing Journey for Endometriosis.



Thank you for sharing your story Melissa. I've been following your blog for a while now and urge other endo sisters to do so also. You really are an inspiration and the steps you have taken to heal your own body not only sound interesting but the dietary tips sound delicious.

If you would like to contact Melissa, you can follow her on Twitter @EndoEmpowered or on Facebook.

Has anyone had a similar experience to Melissa? Have you tried any alternative medicines or treatments? Have you tried changing your diet to help with the pains and symptoms endo brings?


Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read.


S.

Sunday, 23 December 2012

Christmas time, mistletoe and mulled wine.


Oh what a busy time Christmas is! I've never realised how much hard work it actually is until this year. Usually I'd be working right up to Christmas and straight back to work after Boxing Day but this year has been spent getting ready for Christmas and getting things done around the house.


I've been in recovery mode this week from our little holiday in London last weekend still, and boy have I needed the rest! My tummy has certainly been telling me so. I've been very very down again this week, crying for no reason again and generally not wanting for anything. I was back in my hole again but yesterday I woke up and I had pulled myself back out of it again. I hate that that is how depression works but sometimes you cannot decide how to feel. Especially when times have been tough for so long.


I now only have just over 2 weeks until my surgery. I feel sick with worrying over it and from everything that may or may not come from the the period after. I am trying not to think about it too much for now but I have my pre-assessment next week so I cannot put it too far out of my mind.


Me and the boy have a jam packed schedule this week spending time with both our families and friends. I can't wait to see everyone. This Christmas means more to me than ever before because of the year I've been through - and the year my family have been through. That's one good thing about the bad times - it makes you appreciate those who care for you so much more.


I doubt I will have time to write a personal post again before Christmas so for now I wish you all a very, very merry Christmas. I hope Santa brings you all the treats you wish for and may you all have plenty of rest and recuperation in time for a brand new start to the new year.


S.

Saturday, 22 December 2012

My story: Heather Pickens.


Today, the lovely Heather from Hello Endo has shared her story of living with endometriosis, PFD and interstitial cystitis...


Let me start by saying that I have always had very painful periods. Like most other endo sisters, I thought this was normal. I would spend the first couple of days of my period in so much pain, it was insane. I can remember as far back as my freshman year in high school (on a half day of school) watching the clock, just waiting for the minute that I could go home and crawl into bed. There have been days that I have had cramps so terrible, I had to miss school or work.

Now you may feel that this is long, but this is important to me to spread my story. I want other women, whether diagnosed or not, to know that we are not alone. Please continue to read.

Just four months ago, I began to have extremely painful sex. I went to the emergency room a couple of nights later, because the pain would not stop. The E.R. doctor gave me a pelvic exam, tested me for STD’s and yeast infections (and accused my husband and I of not being committed). When all of the tests came back normal, she gave me a prescription to clear up a yeast infection she said probably didn’t show up on the test. I was then discharged.

A week later, I was still having the same symptoms, along with added back pain, pelvic pain, bloating and fatigue. So, I went to an urgent care facility, since my primary doctor was booked. I paid my insurance co-pay, was taken back to an empty room, met the doctor and gave my symptoms. I was not treated at all and I was told to go follow up with my primary doctor or go to the E.R. again. You can only imagine my frustration since I had just paid my insurance co-pay and didn’t get help. 

So, I went to my primary doctor (P.D.) two days later, and told them my symptoms. I was unable to see my actual doctor but got in with a P.A. I was scheduled for an ultrasound. The first ultrasound showed that I had an ovarian cyst, so I scheduled an appointment with my gynaecologist. When I arrived for the appointment, my ultrasound results were not faxed to the office and I had to have another ultrasound. This time, nothing was seen on the monitor. So the gyno said that the cysts had most likely ruptured and sent me home. Keep in mind that at this point I am in so much pain that I have been missing work and not getting out of bed. I was told that I would be fine in a few days.

Fast forward to another appointment with my P.D. (my real doctor this time) and she orders a CT, but tells me she thinks I have endometriosis. I had never heard of endo before this point, but she said she was going to run more tests but wanted me to go to my gyno again. I was also referred to a urologist.

At the urologist, I had to come back three times, one of which for a cystoscopy – not fun. By this point, I have been to the E.R. twice, urgent care, and almost 10 office visits. I had been diagnosed with a UTI, yeast infection, ovarian cysts, and kidney stones. All were misdiagnosed. I was not able to work due to the pain and symptoms, and spending countless money on deductibles, co-pays, and useless prescriptions were weighing on my bank account. At the time of the cystoscopy, I was diagnosed with PFD and interstitial cystitis. I still have not had any treatment for either, and have actually been told I may have been misdiagnosed… Again.

Now back to my good ol’ gyno – my husband and I were so frustrated at this point that we went in with my mother-in-law for someone who may be able to mediate and get some answers. We got none – in fact we were told that I didn’t appear to have endo symptoms and needed to see a gastroenterologist before he scheduled my laparoscopy. So I did that, despite being pissed. I had a colonoscopy and endoscopy and appeared fine. So I called my gyno and a laparoscopy was scheduled – three weeks out.

Now, let’s fast forward to November 7, 2012 – the day of my laparoscopy. I go in for the surgery, and when I wake up from the anesthesia my husband is not around (I was told he would be able to come in after the surgery ended). I asked the nurse to get Tyler, and when he comes in, he says good ol’doctor gyno never told him the results of the surgery. The nurse apologised for his behaviour, and said he went to deliver a baby, and that she would page him. All the problems I had with this gyno hit the roof. I had just had surgery and he couldn’t even take the time to speak to my husband!? When he came back, he said that I had endo. He said that it was “removed and the best solution was to get pregnant to slow symptoms down.”

Since Nov 7, 2012 I have only been able to work 3 days and I am still in a great deal of pain. I have recently learned that in the next three months I will have to have two more surgeries.

Thanks for reading my story. I want a voice, and want to create a voice for others suffering with endo.



Thank you for sharing your story Heather. It certainly seems like you have been passed from pillar to post in the search for answers to the pain. I hope the future goes a bit more smoothly for your story and you find the relief you need very soon.

If you would like to contact Heather, you can follow her on Twitter @HelloEndoBlog.


Has anyone had a similar experience to Heather? Have you had to go through countless tests and misdiagnoses to get an answer? Have you been diagnosed with any other illnesses on top of endometriosis?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read.

S.

Wednesday, 19 December 2012

My story: Elizabeth Metz.


Libby blogs over at The Chronic Caper, where she not only shares her trials and tribulations with endometriosis, but also lots of beautiful vintage finds (a girl after my own heart)! Here, she shares her story...


My endometriosis journey started shortly after my first period. I got that, in a library, at age 12. By 14, I was already in excruciating pain. My periods also never really completely settled and were still fairly irregular. I would often bleed through pads overnight and soaking my sheets in Napisan was a monthly occurrence.


Since my mother had terrible pain from periods when she was a teenager and used to vomit and faint, I counted myself lucky that mine didn’t seem to be as bad (I never vomited or fainted) and figured it was normal. So even though over the counter medications didn’t completely work (I would still be in pain even when I took anti-inflammatory medications like Naprogesic and Ponstan), I didn’t approach my doctor about it until I turned 19 (as far as I can remember).


I went on the Pill for a year and a half when I was 17 to clear up acne issues. I don’t remember that particularly helping my symptoms, but I definitely didn’t enjoy being on it. It made me terribly moody, made my breasts get even larger than they were already (I was self conscious of this and it was also painful) and generally didn’t make me feel like “myself”.


When I was 19 I went to the doctor because I had not had my period for two months, yet I was still getting terrible pelvic pain. He decided to send me off for an ultrasound, which was a strange experience as a 19 year old. My boyfriend at the time came with me since I was nervous, and I have to tell you, I felt odd that I was getting an ultrasound when I wasn’t pregnant. That ultrasound came back clear, so the doctor told me to just deal with the pain and sent me on my way (N.B. Endometriosis cannot be ruled out through ultrasound).


At 22, I went to see another doctor about it as I was still in pain and it was interfering with my life. She put me on another Pill (Yasmin) to try and manage it but again, it made me so depressed I would cry everyday so I came off it after 3 months. I remember one night waking up at 2 am when the FIFA World Cup was on, dragging myself out of bed and rocking back and forth in the foetal position on the couch while Dad tried to distract me with commentary on the soccer. Although I have never been in labour, I can tell you that the pain was contraction like and came in waves that time. Other times it would be a constant ache in my belly, or feel like someone had taken an egg-beater to my guts.


By 23 I was missing work on a regular basis - I had at least one day off work a month because of period pain, and would be in pain a week before my period. I also caught pretty much everything going around and tired really easily. A few times I got terrible back cramps where I couldn’t sit up. I knew that it was not normal after all. My friend had a laparoscopy to look for endometriosis and after this I decided to go to her doctor because he took her complaints seriously. So I went to that gynaecologist and he booked me in for surgery. I ended up having to wait 6 months to have my laparoscopy.


In March 2012, I had my laparoscopy where I was diagnosed and some of the lesions were burnt off. Before I went in, I talked to my surgeon (he was not the same doctor as my gynaecologist) and he questioned me and told that it was probably “just PMS”. This was pretty traumatic to go through, particularly when he claimed that they found what they expected to find (stage III - moderate - endometriosis) when I came out of surgery. I also had a Mirena IUD inserted to treat the endometriosis.


Since then my symptoms have lessened - I no longer have the excruciating labour-like pains, but I do have pain every day. I feel the need to pee constantly (I’ve got lesions on my bladder) and still get some pain before and during my period, although it is no where near as bad as before.


Soon I’ll be having my Mirena taken out (my doctor is worried that it is causing my recently developed anxiety and depression due to my history with the Pill) and will be trying a new medication to lighten my periods. I’ll also be trying a new diet of endo friendly foods with Project Endo to see how that goes. I may have to have another laparoscopy but let’s hope not.


I guess we’ll see how it goes!



Thank you for sharing your story Libby. I could certainly relate to the emotions you have felt while learning to live with your endometriosis and the difference hormone treatments can make to your mood levels.

If you would like to contact Libby, you can follow her on Twitter @libasauraus.

Has anyone had a similar experience to Libby? Have you had a Mirena coil or tried birth control pills? Have they changed your mood levels?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read.

S.

Tuesday, 18 December 2012

My story: Louise Heiner-van Dalen.


I am Louise Heiner-van Dalen, 63 years old. I live with my husband André in Elim, a little village in the east of The Netherlands.

From the moment my periods started at age 15 I had a lot of cramps and stomach pain. I went to the practitioner, and he did some screenings of my blood and urine. Nothing was found. This was in 1964. The doctor told my mother that I was making it up to get attention. So my mother and my younger sister started telling me that they were strong and never complained, while I was weak and always had something to complain about. Every two weeks I had a lot of pain, and I felt so bad; I really was ill. My mother and sister started to call me names and to tell everybody how childish I was.

I got married in my 25th year, and after two years, in 1976, we really wanted to get pregnant. In those years I lost two ‘babies’ during the first part of pregnancy. We went to the gynaecologist and examinations started. Fertility examinations did not seem to be possible for some reason, and in those years the only option was a diagnostic laparoscopy. Then they found that there was a kind of flap mechanism, which was why they couldn’t do the first examination. During this surgery they also saw that there was a lot of endometriosis in the abdomen. They had to tap off a lot of infection humid. When I woke up the doctor told me it was impossible to get pregnant because the ovaries were shrivelled up by the endometriosis. He gave me medicines that should stop my periods for a longer time, but after a couple of months enormous bleedings started. I was not able to take a step because of the bleeding and there was no way to stop it.

My husband and I talked about it, and with pain in our hearts we decided that I should have surgery to take out my uterus and ovaries. We were afraid that going on like this could cost me my life, and I didn’t like to live like this. I was only 29 years old, 1978. After we talked with our practitioner and with the gynaecologist, my surgery was planned. The gynaecologist told us that they would inspect everything, and maybe it would be possible to the take out the endometriosis and to keep the uterus. When I woke up after surgery, I felt the incision with my hand, and it felt empty in a way. I knew enough.

In those years the gynaecologist thought that leaving a tiny little piece of one of the ovaries would be enough to prevent problems with oestrogen hormones.

We already had plans for adoption before we got married, so we started this before my surgery.

In the mean time I didn’t feel well, but it was hard to tell what it was. My muscles and joints started to give problems, and I had a lot of headaches. Every four weeks I had several days of physical discomfort and mental instability.

During that time, 1980, we had our first adopted baby boy, and we were so happy. But the doctors kept on telling me that I needed medicines because of mental problems. I refused that, because I was sure that there were other problems. The abdominal pain returned.

Another gynaecologist did a laparoscopic examination; again he found endometriosis and a few chocolate cysts.

Our second baby boy came in 1981. The gynaecologist kept me monitored.

In 1992, after another surgery, the gynaecologist saw during vaginal inspection that my mucus membranes were very thin and sometimes bleeding. He decided to give me Premarin, an oestrogen hormone. In a short time I felt better than ever before. We were so happy and the gynaecologist told me that I had to take this throughout the rest of my life.

But then more and more the doctors found out that using this medicine could cause a greater risk of getting breast cancer. Because of my husband’s job we had to move every four or more years to another place. This meant every four years another house doctor.

In 2004 our new house doctor forced me to stop the Premarin. I refused. Then he refused to give me a new prescription. Day by day my situation got worse; there were signs of psychosis. I had a lot of pain in my legs and seven nightly perspiration's in 15 minutes so I never slept. We asked the doctor to send me to an endocrinologist. He refused: it was all mental problems and I had to see a psychiatrist. I refused, and my husband went to the doctor to tell him that he wouldn’t leave before he had a referral letter for the endocrinologist. The doctor gave him the letter, and my husband told him that we would never come back to him.

The endocrinologist agreed with my need for the medicines. He did screenings of my blood and wanted to monitor my progress.

We had to look for another practitioner and found one.

Then in 2010 I planned to travel to Québec, so I brought my new prescription for Dagynil, a new name of hormones for me, four weeks before I would leave. I told them that it was important to have them in time. Shortly before leaving, my husband went to the pharmacist to get my Dagynil, but they didn’t have the correct dosage by mg. They gave him a splitter and told him that I could simply split the tablet. I always thought that it was not good to split this kind of medicines, but if they say so... During my stay in Québec, I felt more and more sick, especially in the morning, with nausea, and my daughter in law was joking that I seemed pregnant. After that month I came home, and after a week I felt another psychotic attack coming. Then I knew for sure that the pharmacist and the house doctor had made an enormous mistake. My husband called for the doctor, and he really wouldn’t believe us. I had so much pain in my legs, I felt so bad, and was really panicking. I asked the doctor to make a phone call to the endocrinologist, but he refused. Again the same story! It took three weeks; then I was so upset that I started to shout at the doctor as soon he entered my room. I lived in a strange world that wasn’t mine. I wanted to die to be with the two little babies I had lost. It was horrible.

I kept on shouting at the doctor, and he was trying to make a phone call for a psychiatrist. My husband told the doctor that it would be better to make a phone call to the endocrinologist. Finally he agreed, and the next morning he made a phone call to us to tell us that we had to go to the hospital immediately. Thank God!

The endocrinologist felt so sorry for me. Again the same story. He agreed that I was pregnant – at least I had all the signs – but there was no baby, of course. It took several weeks before I was feeling better after this bad adventure. I had my Dagynil again and slowly I felt more myself.

In 2011 we moved again, and we found a good, friendly doctor. We told him openly about the problems we had in the past, and he listened very carefully.

About six months ago I woke up and felt strange, like another psychotic attack was coming up. I made an appointment with the doctor and told him that there seemed to be something wrong. He looked through blood tests from the last few months, since I need monitoring because I have collagen/microscopic colitis. Then he saw that my thyroid numbers were going up slowly but still within the margin that is normal. I asked the doctor to make a phone call to the endocrinologist, which he did immediately, while we were sitting there. The endocrinologist explained my hormone troubles, and he advised him to prescribe Euthyrox. I was happy and felt better within a couple of weeks.

My abdominal pain is still there, and nobody knows if it is the endometriosis or the colitis, but another surgery will give more scars and troubles inside.



Thank you for sharing your story Louise. It makes me so sad to hear what a terrible time you have had trying to make people understand how you have felt over the years and for the children you have lost. It certainly sounds like you have a wonderfully supportive husband though.

Can anyone relate to Louise's story? Have you had a similar experience with a doctor or family member? Have you had to change doctors and make new doctors understand how you are feeling?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read.

S.

Monday, 17 December 2012

Birthday treat.

If you follow me on Twitter or Facebook, you may have noticed that me and the boy have been away for a few days to the 'Big Smoke' - London!

It was my birthday on Saturday, and to stop me spending it on my own in my bedroom, we decided to have a little holiday. We'd planned it months ago, while I still had plenty of redundancy pay left (!), and I'm so glad we we managed to do it because it was very much needed.

It was a huge thing for me, not only getting away, but carrying heavy baggage around and doing so much walking - especially since I was in a lot of pain with my period, but we had a fantastic time, sightseeing, eating out, theatre going and spending time together, away from problems.

I'm absolutely done in from it now, so I'm spending today watching films and doing a little blog work, but with it being Christmas next week I certainly have plenty to keep myself busy with!

Anyway, I better get cracking, but here are a few snaps of our time away in London... Enjoy!









































Oh and apologies for the quality of the photos... I always use my iPhone camera for ease! I really must start using my 'proper' camera more often!

S.

Wednesday, 12 December 2012

Share your experiences...

Image courtesy of http://chibird.tumblr.com/
I've asked before if there is anything you'd like to see on EMLWY but I guess the main thing that all us endo sisters like to read is other peoples experiences with the disease... Especially since we all have such different stories.

If you'd like to share your experiences on EMLWY then please contact me at shireen.emlwy@gmail.com with your story and a photograph.

I look forward to hearing from you and sharing your stories for others to read!

S.
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