Monday, 31 December 2012

Pre-assessed and ready to operate

Image courtesy of
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 Danny, 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 Danny's 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.


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.

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

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


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 Danny 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 Danny 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 Danny 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 Danny 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.


Monday, 24 December 2012

My story: Melissa Meyer

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. 

If you would like to contact Melissa, you can follow her on Twitter @EndoEmpowered. You can also visit her blog over at Endo Empowered.

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


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.


Saturday, 22 December 2012

My story: Heather Pickens

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. 

If you would like to contact Heather, you can follow her on Twitter @HelloEndoBlog. You can also visit her blog over at Hello, Endo!

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


Wednesday, 19 December 2012

My story: Elizabeth Metz

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 IUS 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.

If you would like to contact Libby, you can follow her on Twitter @libasauraus. You can also visit her blog over at The Chronic Caper.

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


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.

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


Monday, 17 December 2012

Birthday treat

If you follow me on Twitter or Facebook, you may have noticed that me and Danny 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!


Wednesday, 12 December 2012

Share your experiences

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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 with your story and a photograph.

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


Tuesday, 11 December 2012


You might have noticed that I haven't been around for a few weeks. I haven't really got any excuses - I just wanted some time away from things really. I've been feeling quite under the weather and tired and weary recently so most of my days have been spent snuggled in bed watching films. My pain has been pretty easy to deal with - the odd twinges here and there but nothing too bad. I've still been trying to deal with these headaches though. It doesn't matter what I do, I just can't get rid of them.

Last Wednesday I decided to stop taking my Tramadol. I wondered if it would help my headaches to give myself a bit of time away from them and also I wanted to see what my pain was actually like - I didn't think it was bad enough to warrant Tramadol at that time and thought Paracetamol would be fine. It's not the first time that I haven't taken them - but previously it's only been the odd day here and there. What happened next, well, I just hadn't thought of at all and by Friday it became clear that I was suffering very badly with withdrawal from the tablets and it wasn't getting any better.

I'd noticed on the Wednesday that I was extremely teary, and was feeling like I had been before starting on my Citalopram. I couldn't sleep either that night and then it was the same on the Thursday except the night time was just an absolutely horrible, horrible night. I couldn't sleep because I was getting terrible muscle spasms in my left arm and down my left side. They were so bad I couldn't stay still and they were making me feel sick. I couldn't even really explain what it felt like - it felt like pins and needles but it wasn't, and it felt numb and prickly, and strange. My head was a whirl of anxiety, paranoia, depression, aches and clouds... At one point, I just lay there thinking this was it, I was dying. Every time I fell asleep, I'd wake straight back up with these feelings again. My tummy was a bit upset, I was getting ridiculously bad hot flushes and I felt, well, wired! It was a very long night.

I didn't know what was wrong but we had to go out on Friday morning and the spasms seemed to calm a little. I could still feel it in my hand but I thought it would just go away. I thought I had an infection or a slight cold because my throat was a bit sore and my head was cloudy so I started taking some cold and flu tablets. Anyway, Friday afternoon came around and since I hadn't had any sleep I climbed back in to bed, but I couldn't settle because the 'spasmy things' were getting worse again. I couldn't keep still and at one point was rocking backwards and forwards, smacking myself!

I ended up calling my mum to see if she could suggest anything and it was only by chance that she had asked if I thought it might be my tablets causing the problems and I told her then that I had only been on Paracetamol since stopping my Tramadol on Wednesday... And then it all became clear: I was going through a state of withdrawal! I quickly Googled 'Tramadol withdrawal' and everything I read explained exactly how I was feeling.

I started back on the tablets that evening (after my mum went back home to fetch them for me as I was at the boys house and he was at his works Christmas do!) and within a few hours I started to feel some relief. It took until Sunday though to get fully over it. It was horrible but it's made me realise how dependent I am on these tablets now and how much it's going to take to safely get off them. It's scary but it could have been much worse and thankfully, I now know that I cannot just come off them - I'm going to have to see the doctor and reduce my intake gradually. I'm just glad I had stayed on my Paracetamol else  the effects of the withdrawal would have been much more severe.... I'm never going cold turkey again!

My period started on Sunday, a day late this month and it's done the same as last month again. I had a bit of a show Sunday and then nothing since then. Now it's just a waiting game to see what happens with it but my tummy has been hurting a bit more today and I have terrible back and shoulder pains. My hip area is still hurting a lot too but I'm just putting it down to something catching like a new or bigger cyst now.

I've been very down about the whole baby thing again. I try not to think about it too much but sometimes it just manages to get through and then I can't control my emotions. It's always worse around this time of the month too, realising that yet again, my body has failed us. I've stopped going on Facebook too because my feed seems to be full of babies, so now I'm managing my page through this new app. I don't think I'm missing anything!

It's now less than 1 month until my surgery and I'm holding my hopes so high that this will work. I don't know if it will work, if my pains will diminish enough for me to return to work and driving and leaving the house on a regular basis. I don't know if it will enable me to have a child. I don't know if it will clear out my endometriosis for good. I don't even know yet what the next steps are after the surgery. I just have to focus on the surgery, get past that and keep positive that it's going to get me back on the right path.

December is a busy month anyway this year so I have lots to keep my mind and body busy. I've been to two concerts recently, Alanis Morissette and Mumford and Sons (both incredible!), and we've been very busy getting our Christmas shopping finished. Tomorrow I'm having a girly day with my Loulabelle, shopping and warming ourselves with hot coffees. It's my birthday on Saturday and I can't wait because this year we are off to London for a long weekend! I'm so excited but I have so much to do before then - finishing off blog work and getting caught up from my weeks away, wrapping presents, washing and ironing and packing... Phew! At least getting away means I can't hide and cry about my impending old age!

I had a letter through last week from the DWP and I'm being reassessed for my benefits - already! So I've had to complete yet another 20 page questionnaire on my illness and situation. I may have to go for another medical assessment and I don't know if my benefits will continue. I just have to wait and see on that one. What a stress!

I think that's pretty much all my news... Oh, I've had my hair chopped off too! I fancied a bit of a change so I've had a bit of a pixie cut on it! I'll get some proper photos soon but if you follow me on Instagram you may have already seen the photo I took just after having had it done.

Anyway, think that's me done... I should really go and get started on this packing. Or wrapping... Ugh.


Sunday, 25 November 2012


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Today's post is about how my goals have evolved over the period of time I've been living with endometriosis and it's really got me thinking about what my goals have been since my diagnosis in 2005.

Up until this year I can't really say that I've had any goals - apart from being able to have children. That's always been there, at the forefront of my mind, niggling away at me. But I've always just settled with the conclusion that I wouldn't know how that goes until I start trying. Apart from that, it's always been a take-one-day-at-a-time-and-see-what-happens kind of goal... Lets see how this treatment goes... Let's see if the Prof. can suggest anything else to try... Lets see if I will be having surgery again... Let's see... Blah, blah, blah!

But this year that all changed when my endometriosis flared up in February. My initial goal was to get the pain to stop. Then get back to work. I never imagined at that point that I would have to take a year out of the job that I'd worked so hard for... The job that later made me redundant! Above everything else this year, besides maybe winning a fortune on the lottery, my goal has been to get better.

It's been a really difficult time. Some days I've felt pretty good and sometimes gone without any tablets (that's happened on about 2 whole days this year!), but then, boom! The pain is back and I can't do anything again. It's difficult having to live your life like that, not knowing what's going to happen, just waiting to see how things go and taking one day at a time.

Since finding out my date for surgery, I've been setting goals to get to that will take me up to the operation. Little things like concerts or our break in London, Christmas time and New Year.

The big goal is my operation in January and as yet I haven't really looked past this. I don't know what's going to happen after my surgery. I'm praying it works and I'll be pain free - I know what happened last time with this surgery but I am trying to be positive and hold that hope tight. This is going to be it, the surgery that will change everything. I'll be back at work as soon as I can and then me and the boy can get out little house and properly start our lives together.

It's keeping me going - that hope. But I won't know if it all pans out until January.


Saturday, 24 November 2012

No limits

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Today I want to write about what I would do if I had an unlimited amount of time or funds or spoons in a day - what would I do with those 24 hours?

Well, I'm going to keep this post very short and sweet because it's simple. It's exactly what I have planned for when I've had my operation and I'm better...

I'm going to go shopping in the daytime and then go out for a lovely meal and a night full of cocktails and dancing with my friends and Danny.

It's nothing fancy or overly expensive but I absolutely cannot wait until that day.


Teaching doctors about endometriosis

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I must apologise for being a little slow on the posts this week. I'm just having a complete mental blockage and just can't get the words flowing like usual! Even the posts I have managed to do don't seem up to my normal standard... Hopefully I'll snap back in to it soon because it's difficult to write everyday when you can't think.

Today I want to write about something that our doctors have taught us or something we have taught a doctor. Now, I can't say there has ever been a time when I've specifically taught a doctor something about my endometriosis, but it's more the response you get when you ask or suggest something. A blank expression and a "no, that's nothing to do with your endometriosis".

Since my initial diagnosis, it's become more and more shocking how little doctors actually know about the disease. I almost feel like I need to tell them exactly what endometriosis is sometimes.

I remember one time, a while after I'd been diagnosed, I went to the doctor because I experiencing really bad shoulder pain every month around the time of my period. I didn't know what it was, but I did know it played up when I was bleeding so I asked the doctor if it had anything to do with my endometriosis. He almost laughed at me - seriously. I mentioned it to my specialist when I next saw him and he told me that yes, it is due to my endometriosis. Shoulder pain is an indication that you have endometriosis on your diaphragm - which was confirmed in my latest laparoscopy this year. If I had listened to my doctor then I would never have mentioned it again.

At this stage, I'm now quite used to it and quite clued up on endometriosis and my options with it, but if you're not in the same position as me then you might not get the information you need because the doctors are not offering it. What then!?

Have any of you ever had any experiences with this same thing?


Thursday, 22 November 2012

Thank you

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I made the connection late last night that today is Thanksgiving in the USA so this is quite a relevant post - a thanks post! But before I start, I would just like to wish those of you from the USA a very happy Thanksgiving!

As you all know, this year has been an extremely challenging and difficult year for me... But, I'm going to keep this simple, after all, I'm not blummin' Gwyneth Paltrow!

I am thankful that I have Danny in my life. He has held me up when I've been crumbling, has been my rock through the toughest of times and has stood by me no matter what I've thrown at him. He is the shining star in my darkness and I love him more than anyone could ever know. We are each others future and I'm no longer alone in this. We will share our journey together and I know he will be there always always, bringing me the hope my heart lacks.

I am thankful for my pussycat Daisy. It sounds really daft to be thankful for an animal, but Daisy Bella means the world to me. She came to me in the most traumatic of circumstances but I like to think that Bunty knew that I needed her. She keeps me company everyday and is always by my side. Her and Danny are my own little family and I love her so much.

I am thankful for my family - my own family and Danny's family. They have all helped and supported me this year whenever I have needed it. I am especially grateful for my mama. She's done everything for me even when she has been going through an absolutely horrific time herself. I've learnt that family are the most important thing to me - the ones that are always there for you regardless and after all my family has been through this year, it makes you realise how much they really do mean.

Even though she comes under the same label, I am so thankful for my someday sister-in-law. Thankful for her weekly visits, for her daily texts, for keeping me up to date on the gossip and accompanying me on shopping days - in a carer style! - and for most of all just being my friend when I've needed a friend. I am thankful that she is my family so I'll have her around forever.

I am thankful for the friends who have stood by me this year, who have contacted me, visited me, kept me in the loop. I'm also thankful to all the 'friends' that haven't been there for me because at least now I can stop wasting so much time and effort on them. My mama always said, you'll learn who your true friends are when you need them the most, and I most certainly have.

I'm thankful for all the support I have found online. For my endosisters, who know exactly what I'm going through, for all of you who read and follow the blog, for all of you who take the time to notice me. I am thankful for having found an outlet in EMLWY.

Finally, I'm thankful that I have a roof over my head, that 2013 isn't far away, for my painkillers, internet connection and Netflix, thankful that I am safe here and that I wake up every day with a breath of fresh air in my lungs.

It's some times difficult to remember all the things we have when you feel like you have nothing.

I may not have my health, but I am very lucky to have everything else.


After leaving the confines of my room

I've been poorly the last few days with a tummy bug. I must have picked it up when I left the confines and safety of my house for a few hours on Sunday but I've been feeling really bad ever since with an upset tum and the worst headache you can imagine.

I've just spent the last few days in bed with Netflix, watching endless films and drinking water. I haven't even been able to eat properly.

I'm feeling a lot better today but my headache is still there. I've had it for weeks now and it will not budge!

I haven't got much planned for the next few days. I'm having to take it easy really because of this hip pain and headache and all my other aches and pains and exhaustion etc etc etc! I'm off to the doctors tomorrow to discuss a few things and then me and Danny are going out for dinner with my mama and her partner. I'm really looking forward to getting out for a few hours. On Friday I'm hoping to get in to town for a wander as Danny is going in to have a tattoo finished. I'll have to see how I feel though because I think tomorrow night may do me in! Then I have a quiet weekend planned round Danny's house. I'm missing our friends birthday night out on Saturday because of how I'm feeling so I'm spending the evening snuggled up in bed with my someday sister-in-law and a cup of tea... So eventful!

Thank you to all of you who have replied to my last post, it's really good to get advice from other ladies in the same position!

Anyway, anyway, anyway, I'm tired and it's very late and I want nothing more right now than to climb in to bed so goodnight all. Hopefully I'll have something more thrilling than lying in bed to talk about next time!


Monday, 19 November 2012

Back at'cha, sister

For today's post, I'm calling on all my endo sisters for a little advice. I usually just blurt out any questions I have on Twitter or Facebook, but recently I've stockpiled a few for this post. If you have experience with any of my questions below, please leave an answer in the comments section. I'd love to hear from you all!

:: For those of you with endometriosis on your bladder, do you have any problems with wetting yourself?

:: For those of you with endometriosis on your diaphragm, has your specialist ever told you they wouldn't remove it because it was too close to your heart?

:: Has anyone got endometriosis higher than their diaphragm?... How was this diagnosed and what symptoms did you have?

:: Have any of you got conditions other than endometriosis, that have shown up since diagnosis? I'm particularly interested in hearing from anyone with chronic fatigue as I'm showing all the symptoms of it and I know it's more prevalent in women with endometriosis.

:: Have you found any alternative medicines or products that have had a positive effect on your endometriosis?

:: Have any of you found a special diet has helped your pain and symptoms?

:: Have any of you found cutting dairy, wheat and/or gluten from your diets has actually helped?

:: Have any of you used a TENS machine for your pain - has it helped at all?

:: For those of you trying to conceive or those of you who have been lucky enough to have a baby, do you have any tips or things to try? Have you had to try IUI or IVF treatments? How long did you try for before starting IUI/IVF? How long did it take you to finally conceive? Did pregnancy reduce your pain during or afterwards regarding your endometriosis?

:: Do any of you regularly exercise? What do you find to be the most effective exercise types ie. yoga, pilates, running, swimming etc for your endometriosis? Have any of you needed to go through a type of rehabilitation plan for getting back in to exercise after a long period of sickness or an operation?
Thanks in advance ladies.


Sunday, 18 November 2012

A simple change to healthcare

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For today's post I wanted to talk about where the NHS could make changes based upon my own experiences of being in hospital, and I thought I'd have a long list of things to discuss. But, actually, the more I thought about it, the more it just came down to the one thing.

I've spoken about my experiences of being in hospital before, so I won't go in to too much detail again.

My first laparoscopy was a quick outpatient procedure so I was only in for the day. The staff were excellent, made you feel very comfortable and made sure you had everything you needed.

For my next surgery, which was my laser surgery and adesiology to remove endometriosis from my ovaries and Douglas pouch, I was operated on at a different hospital and I had a terrible experience. Like I mentioned, I've written about it before so I won't rehash everything again, lets just say that it winds me up thinking about it. When you are feeling at your very worst, especially after a major surgery, you want to be looked after - be given adequate pain relief, some food, a change of bedding since it was covered in blood and a little help to get to the toilet. But nope, I didn't get any of that - 3 days, I was in there and it was horrible.

My last surgery in May this year, my second laparoscopy, was at a different hospital again, and luckily my future surgeries will also be here. The nurses were absolutely fantastic from the moment I arrived until the moment I left and that's the only thing I'm seeing as any comfort for when I have to go back in to hospital in January (I'm trying not to think about my operation because it scares me!). At least I'll be in good hands with people who care about their patients and obviously about their work.

And that's what it all comes down to. I know nurses are underpaid and over worked and short staffed, but when it comes down to it, they have a responsibility to care for those people in their wards and make them feel comfortable - and at least do the basics of their job. I know everyone has their bad days and that most people don't enjoy their jobs, but the patients need to just be given a little more care and attention. A smile. Anything. The hospital I went in to this year is about 10 minutes up the road from the last hospital and the difference in quality of care was unbelievable. They offered me things to relieve the pain, gave me cups of tea and food, helped me get to the toilet and helped me get dressed. They talked to me. They checked on patients regularly and you never saw them having a gossip down the hall way when you needed something.

All I want, is some care from the people who are meant to be giving it to me and other patients. That isn't too much to ask for - surely?


Saturday, 17 November 2012

(Sort of) a post free day

I've been pretty busy this evening and with not feeling good it's left me feeling more than a little whacked!

I mentioned in my last personal post that I was having problems with my period. Well, on Thursday it finally made a proper appearance, and boy, did it make up for lost time! It was ridiculously heavy but then it decided to stop again yesterday evening and since then I've been back to nothing. I did my second pregnancy test before my period started up properly on Thursday and it was another negative so I think it's just being a pain in the bum! My tummy is so swollen up it feels like it could burst at any moment!... And it's not just the fact that it's huge, it's hard as well and pulling any clothes over it hurts. I've been on my full amounts of tablets since yesterday though (Tramadol, Paracetamol, Ibuprofen and half a dose of Nefopam) and they are really helping with the pain.

I've just been taking it easy the last few days and I've mainly been sat in bed watching films all day, everyday, this week. I spent Tuesday at my mama's house which was much needed because she always looks after me! We've got a lot of problems going on within the family at the moment which is really taking it's toll on all of us so it's nice when we can all pull together and support each other.

Yesterday, after dosing up on all my tablets and sticking a heat pad to my clothes, me and Danny ventured in to town for an hour or so just for a quick wander around the shops. We got a free Elf DVD from HMV with an O2 Priority Moments voucher which was nice and I made the rounds in one of my favourite charity shops and managed to pick up some vintage finds - a beautiful blouse and a leather handbag!

I gave up dairy again this week. I had been a little more easy going on the diet for a few weeks, having a little bit of cheese here and there if I wanted it but I didn't feel very healthy being back on it - actually I just felt like a big fat lazy bum! - so I've come off it again. It doesn't have any effect on my endometriosis but I do feel better already. It's quite nice to be able to find healthier, lower fat versions of foods I'd usually eat or try new things. Tonight I made a dairy free dinner for my dad and Danny and we all enjoyed it. I might post a photo on my Instagram... Maybe. We are just sat down now with some snacks and movies. We watched Men in Black 3 earlier and now we are on to Chernobyl Diaries - which is thoroughly scaring the life out of me!

Tomorrow, if my tum allows it, me and Danny are hitting a car boot (since we haven't been to one in months now) and then going to visit Bunty's grave as it's her birthday on Monday.

Anyway, I hope you are all having a good weekend!


Friday, 16 November 2012

Pictures to inspire

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For today's post I've decided to share some art that has been inspired by endometriosis. Most of these images have been created by women living with endometriosis but some can simply be linked to the disease through your own interpretations.

Jodie, the lady behind the Facebook and Twitter pages for Endometriosis Awareness Through Art, kindly let me use some of the images she has gathered to show here... Thank you Jodie and thank you to the artists themselves for sharing and creating their work.

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Adelaide Damoah is a British artist and Writer who suffers from endometriosis. She uses her artwork to raise awareness of endometriosis. You can view more of Adelaide's work on her website.

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Created by Kaye Sedgwick who has recently set up the Roses of Endometriosis project which is working to raise awareness of endometriosis. Kaye, a UK based designer, was diagnosed with endometriosis 3 years ago and has since worked tirelessly to raise the profile of the disease alongside Endometriosis UK and The Endometriosis She Trust UK. You can read more about Kaye over at her site.

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Created by Helen Tupper who states: "This represents how a muscle spasm feels. It is a hot fiery ball of pulsating pain which is wrapped up in barbed wires. It is very difficult to break the ball up. The wire bands feel like barbed wires so that when I try to exercise or work on the spasms, the tight bands become tighter and sharper. Pain is trying to win again by putting the tight bands around each spasm."

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Created by Cynthia Yolland who states: "This is an expression of the two worlds that is pain, especially in hidden syndromes and chronic pain. There is the outer world that is normal. "You look wonderful", then the turmoil that is going on inside. I wanted to take the pain out of the hidden box and shake it, then show it to my doctors, and my family and friends. In fact, a copy of this picture is part of my medical records."

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These fibre art pieces were created by Abigail Doan and later pinned on Pinterest where someone commented to say that it reminded them of the adhesions that endometriosis causes.

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Created by Urban Idealist Art and Design, this piece is called the "Story of my Pain" and illustrates the artists now nearly daily struggle with endometriosis.

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From a series created by Margaret Kalms entitled "Period Piece", an exhibition that shows the many aspects of menstruation, in particular the pain and indignity experienced by women. You can view more of the exhibition here which included photos depicting endometriosis.

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These paintings were shared by Tina McCurdy on the Endometriosis Awareness Through Art Facebook page. They were created years before her diagnosis, but the turmoil that this disease can cause is evident in both pieces.

"Layers" and "Injustice" images courtesy of

From an Online Arts Project, created by Tricia, a Creative Arts Therapist, who has also experienced life with endometriosis. These particular pieces were created by "Betty" and you can read her story of living with endometriosis and view more of her art work here.

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This is a piece created by Kelli Rossetti - still in progress, but very simple and effective.

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This is a mixed media piece created by Megan Wilson.

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Created by Nicole and shared on Amanda's website, a lady living with endometriosis. Amanda also has a YouTube channel for raising more awareness.

I hope you all enjoyed this post. I think it's lovely to see some of the creativity that comes out of this disease - finally a positive!

Do any of you ladies have creative outlets to distract you from the pain and distress endometriosis can cause?