Wednesday, 27 February 2013

Spectacles and foggy heads.


I haven't been feeling too great since my last post. I'm tired. Tired of feeling like this. Tired of my mind. Tired of the things that are making my mind like this. I've been out of the house quite a bit but nothing improves. Pain wise I'm getting on OK. I have only taken 4 Ibuprofen over the last 3 days (on top of my Tramadol) so that's an improvement, but my period is now late and I'm in a lot of pain going to the toilet - still/again. But my head is such a mess. I'm worried about so many things and still finding it difficult to handle everything that happened last year.


I spent last Thursday with my mum and we managed to get out for a little look around town. It was lovely but so, so cold! That's one thing that's becoming a shock to the system when I leave my warm, cosy bedroom! It was nice to get out with mum though - it's been quite a while since we last went shopping together. 


On Friday I had a wander around town again (the town near me this time) before me and the boy both went for eye tests. As you may have seen, I have had to get myself some glasses, which isn't that big of a surprise! In the evening, I wrapped up with thick socks, boots, fleece lined leggings, normal leggings, a t-shirt, 2 thick jumpers, a wooly hat, 2 pairs of gloves and my thick winter coat, to go and sit in the snow and watch the boys football team, Notts County beat Bury 4-1. It was good fun and we had some hot drinks and my favourite mushy peas so I was happy! The boy even bought a wonderful stripy scarf for me to wear so my neck wouldn't get cold! Lucky girl.


I was pretty much done in by Saturday but managed to get all my houseworky bits done (with the help of the boy) which made me feel a bit better. It drives me mad when everything is a mess. My brother asked if I wanted to meet for a coffee in town so he picked me up later on and we took my niece in to town for a painting session at this little arty cafe called Creations. You go in, pick the item you want to paint, the paints you want to use and a drink then settle down for as long as you want. All you pay is £3 per person for painting then for the item you want to paint (and obviously, for the drinks). You can even decoupage items too. It's such a good idea and my little niece, Merryn, loved it, even though she was a bit poorlysome that day. She painted a bunny rabbit and I painted an 'M' for her. So much fun! I got back home just in time to change quickly and get over to Nottingham for dinner with the boy for his birthday. We went for drinks first then on to Jamie's Italian for a meal and it was blummin' delicious. I posted some photos on my Instagram of the food we had but they didn't do it justice at all.


I wanted to sleep and rest all day on Sunday but I eventually peeled myself out of bed and we went to visit the boys Nanna. She is the only grandparent we have between us now so I do enjoy going to have a cup of tea and a chat. The boy got his car back too but unfortunately it's still broken and it's looking like it's going to cost an arm and a leg to repair... And here we were hoping for some luck this year.


I went to the doctors on Monday. I was supposed to go in January for a review of my antidepressants but couldn't as I was still in recovery from my surgery. The good news is that I have come down a level on my Tramadol. Instead of taking two 150mg capsules per day, I now take two 100mg capsules a day. So far it's been OK apart from being in a bit more pain yesterday - but I can still take Paracetamol and Ibuprofen on top of the Tramadol if I need too. I just hope that I don't start to get any withdrawal symptoms again because that was horrible! The bad news is that the doctor has increased my antidepressant dosage and referred me on for liaison psychiatry now. I saw a different doctor - my own doctor - instead of this one I had seen the last few times and she actually seemed like she wanted to help me. I feel a lot more relieved now that my problems are going to be sorted instead of being covered up by medication, but obviously I'm not overly proud that my dosage has been upped. It makes me feel even more like a failure. The boy doesn't like me being on them and I didn't tell him my dosage had been increased until we got home. He thinks I don't need it because I'm better now but right now I feel more down then I ever have before and it scares me. I've been in better places than this before, without the need for tablets and still done stupid things. I don't want to go back there again.


It was the boys birthday yesterday and even though he has had his birthday wishes from me and our pusskins, Daisy, I just want to wish him a very happy birthday again. 


I've been trying to rest from the weekend but since I have so much to do I've been busy getting all of that done too... Mainly work on the blog. I'm lagging behind on getting your stories up (if you have sent one over it will be up as soon as I can fit it in!) and replying to all your emails and messages on Twitter and Facebook


I've just been a bit shut off from everything and to be honest that's the way I like it right now.


S.

Tuesday, 26 February 2013

My story: Robyn Atcheson.


My periods started when I was thirteen, heavier and more painful than any of my friends. I first went to the doctor about my period pain when I was fourteen and was referred to paediatrics who told me I was experiencing ‘growing pains’ which were perfectly normal. 

In an effort to lessen my bleeding, I was put on the pill. After several months, I was clinically depressed and frantically terrified of leaving my house, a hormonal reaction to the pill. I changed pills and soon felt like myself again. The pill helped regulate my periods but they were still very heavy and very painful. For years I kept returning to my doctor and kept being told it was normal to bleed for ten days and cry in pain for at least a week every month.


When I turned eighteen I asked if I could be referred to gynaecology since I was now technically an adult. The consultant booked me in for a laparoscopy just before my nineteenth birthday.  The lap diagnosed endometriosis and the surgeon lasered off the tiny bit on my left ovary as well as inserting a Mirena. Afterwards, I felt great. I lost so much weight simply by being pain-free and able to do more than ever before. The Mirena completely stopped my periods and life was great.


A week after my twentieth birthday I collapsed in university with pelvic pain. The ambulance took me to the nearest hospital where they referred me to a gynaecologist for an out-patient appointment. My life turned upside down overnight. I couldn’t do half the things I could before. I couldn’t wear jeans or stay out late. Friends quickly became bored with my claims of being in pain and accused me of attention seeking. My uni boyfriend broke up with me because I was no longer the girl he had met. The pain I was now in was different than in my teenage years; it didn’t follow any pattern and didn’t conform to a monthly cycle. It came randomly and viciously, every few days. 


Months passed before I got to see a gynaecologist who performed an internal exam (even though I was still a virgin) and suggested another laparoscopy. My second lap, eighteen months after the first, showed nothing but scar tissue and I was discharged.


I went back to the beginning and started asking my GP for help to work out why I was in so much pain. I was told it was IBS and given a range of different treatments to try. When none of them worked I had a colonoscopy which still shed no light on the pain. Then I was sent to a general surgeon who suggested I lose weight. I questioned why no one had ever done any scans or even blood tests and, reluctantly, he booked me in for an MRI.


Meanwhile, I tailored my lifestyle to accommodate the pain and fatigue. I started seeing someone and fell in love. The MRI showed thirteen cysts on my ovaries, the biggest more than 10mm in diameter. I was sent back to gynae with a new diagnosis of polycystic ovarian syndrome. 


The new gynae didn’t seem too bothered about the polycystic ovaries and started me on hormone injections to put me into an artificial menopause. The Zoladex injections not only put me into the menopause, complete with hot flushes and night sweats, it also intensified the pain.  I couldn’t go to work, I couldn’t do anything but stay curled up with a hot water bottle and tramadol. My boyfriend was only twenty and found it hard to deal with everything that was going on. I realised that it was all a bit too grown-up for him and had to break it off.


A few weeks later I was admitted to hospital. I spent over a week in the gynae ward and during that time I had an ultrasound and a hip x-ray. Finally, a doctor came to see me to suggest that I see a psychiatrist since the pain was all in my head. I refused. I knew the pain was real. I came off the Zoladex and asked to be referred to the pain clinic. There I met with a doctor who actually listened and tailored a pain management treatment to enable me to get on with my life.


When I returned to work, a woman just back from maternity leave had heard about my stint in hospital and told me it sounded like endometriosis. She recommended a specialist and I immediately asked to be referred to him. I also started attending an endo support group, even though I was by far the youngest member. It helped me build confidence and I discovered that most of the girls in the group also went to the same specialist.


The first time I saw him, he agreed that my symptoms sounded exactly like endometriosis and he told me he would operate to remove it. He gathered all my notes and scans from the various hospitals I’d been in. Then, at my next appointment, he said that there was no evidence and therefore, he didn’t believe that I did have endo after all.


After months of self-pity and wondering if maybe it was all in my head, I decided that I needed to know one way or another. In January 2012 I knew my Mirena was due to be changed and asked my consultant if I would need to be knocked out for him to change it. When he said yes, I asked if he would just have a look around since I was going to be knocked out anyway. He laughed at my insistence and said that even though he thought that there was nothing to find and I understood the risks, he would schedule a laparoscopy.


The lap was scheduled in July as a day procedure. Another girl from the support group had a lap around the same time, though he was so confident she had endo, she was booked into hospital for a week. He was so convinced I didn’t have it, I was booked in for a few hours. When I woke up he told me there was endo on the outside of my uterus, vagina and pelvic wall. There was so much, he couldn’t remove it at the time so I would need to have another operation.


I had the operation two weeks ago. More had grown since July; it now covered the uterus, vagina, rectum and pelvic wall with a little bit on the bowel. He was able to excise most of it, leaving the bowel as it was too fragile. He shook my hand and said ‘well done’. Technically, it should have been the other way around… I just slept there while he did the complex surgery but I knew what he meant. Along with practically every other doctor I’ve seen, he had argued with me that I couldn’t possibly have endometriosis and only agreed to do a laparoscopy because I insisted and fought him to get it. I was right all along. No one knows my body as well as I do and while I might not be a doctor or a specialist, I knew that what I was going through wasn’t normal. I knew it wasn’t in my head though countless people insisted it must be.


This condition has cost me a lot. I’ve lost years of my life. I’m still only twenty-three but I feel much older. I’ve lost friends and relationships and given up things that used to mean a lot to me.  However, I’ve also gained important things like perspective, patience, and empathy. The friends I have now are real friends and my time is precious so I use it carefully.


I know that the war might not be over but it’s a relief to have won this battle.




Thank you for sharing your story Robyn.

If you would like to contact Robyn, you can follow her on Twitter @randomrobyn.


Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.

Wednesday, 20 February 2013

Love hearts and broken autos.


I have to admit, besides the moments alone, moments when I have thought about everything, moments when I have let the badness trickle in to the forefront of my tired mind, overall, I've been feeling much more chipper the last few days. Not so much positive, but better than I had been feeling. I've felt myself enjoying things again, getting excited about plans we have for this year and, in general, getting things done. 


I feel a lot more mobile. Instead of curling up in pain everyday with my heat pad, I've actually been able to move around and do things for myself. I've still been having toilet problems and it still hurts a lot during the night. The last few nights in particular have been very bad. I've woken repeatedly from my sleep in more pain than usual and my tummy has been very swollen. But the daytime's are easier. And that's one thing to be happy about.


Last week I spent some time with my mama, which I always love, and it did me the world of good. It reminds me that she needs me so much - as much as I need her - and neither of us are alone in our feelings. The past year hasn't just been bad for myself, it's been bad for everyone around me too, but more so than anyone, my mama. She always pulls me out of my hole when I need it.


The boy was poorly with a bad cold for a few days so he spent some time resting at mine. I had been nagging away at him to make sure he got me a Valentines Day card because he is so against it! Anyway, Valentines Day came around and I got a beautiful card from him. His card, on the other hand, had decided to go walkabouts! I had moved it to a safe place but then when it came to giving it to him, I just couldn't remember where this 'safe place' was! I felt terrible for making such a fuss but he knows I love him. He doesn't need a card to tell him that. But, next year, he'll be getting a a doubly big card to make up for it!... Unless, of course, I put that away somewhere for safekeeping too!


I stayed at the boys house over the weekend. It was nice to have a change of scenery! We didn't do too much, but on Sunday, which was a beautiful day weather wise, we decided to head to our favourite car boot over in Melton. Unfortunately, we got half way there and the boys car decided to give in on us, so we had to wait for the AA to come and pick us up and tow us back home! It wasn't exactly what we had planned on but luckily it turns out it's not going to cost as much money as we had initially anticipated which is great news. Back home we decided to have a wander in town, since it was still before lunchtime. I must have come back with the most boring bag of things ever... Bin bags and plain pillow cases - exciting ha!? But it was nice to get out and although the boys mama and papa dropped us in town, I did manage to walk all the way back! I was quite proud of myself.


I haven't got much planned for this coming week, just getting bits and bobs done and seeing mama. But I'm excited about the weekend. I'm going to the football on Friday night with the boy and then on Saturday night we are having a night out to celebrate the boys birthday. I'm really looking forward to it!


The boy said my recent posts were getting boring because I have been so down so I hope you can all see some positivity shining through now. I think I might be on my way finally.


S.

Tuesday, 19 February 2013

My story: Katie Pulver.


My name is Katie Pulver and I am 22 years old. I was diagnosed with endometriosis at the age of 19 years old. 

I was diagnosed during an emergency CT scan due to issues with my appendix. When the doc told me I had it, I never thought it would have such a big toll on my life. I have always had sharp pains and painful periods but I never thought anything of it. After I was diagnosed I started to have even more pains and the depression set in. 


A year after I was diagnosed I got married. Shortly after my husband and I got married, I got pregnant (much to my surprise) but at 18 weeks pregnant I lost our baby girl. After that I hit rock bottom I didn't know what to do. I felt like a failure as a woman and a wife. Every time that I found out someone was pregnant I would cry for days. I became so sick after the miscarriage I was in the hospital at least once a month. I then had a laparoscopic surgery before we moved to Arizona. 


Shortly after we moved here I became pregnant again. I made it to 12 weeks and I really thought that this was my time, but instead I went to the hospital because I was spotting and my baby had no heartbeat. Again all of the same feelings came back I didn't know what to do or how to feel. 


After that miscarriage I got called for some tests from my doctor due to an irregular pap smear. They had found a lesion on one of my ovaries so I had to get it removed. After the biopsy came back I slowly lost it. I felt like one bad thing after another was happening and I had no idea what to do anymore. 


About 5 months later I became pregnant again. With this baby I only made it to 9 weeks. The baby had no heartbeat when I went in for an ultrasound. Since then every month that comes I always think that I am pregnant and I cry every time that I find out I'm not. 


I dread my period every month because of the pain, stress and anxiety that comes along with it. I never ever thought in a million years that I would be dealing with this. The hardest part of it all is the fact that every time I mention it to someone they look at me like I'm an alien. No one realises the pain it causes and the depression as well. It's more then just a bad period. I'm writing this story so that people can become or aware of what us women go through. People need to be more aware of what this horrible disease puts people through.




Thank you for sharing your story Katie.

If you would like to contact Katie, you can follow her on Twitter @KatiePulver07.


Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.

Friday, 15 February 2013

My story: Bebe Stokes.


My experience with endometriosis has had a rather huge impact on my life, as it does with any woman who's ever been diagnosed with it. 

I was diagnosed at only 14. I've always had terrible periods that started very early. Heavy bleeding, pain so bad I could barely walk, being extremely nauseous, lasting for sometimes up to 2 weeks. I always thought it was normal. I had never experienced a "normal" period. The only reason I had begun to know something was wrong was because the pain continued, never stopping. Everyday struggling to get out of bed. I had missed weeks that turned into months of school. I went to doctor after doctor, and had midnight hospital visits regularly. We had been doing multiple tests that showed nothing. The frustration became over whelming, and very scary. 


My mom is the real reason I was diagnosed. This disease has ran in my family for as long as we can track. She took me to my OBGYN and I had began to explain what had been going on and she insisted on scheduling a laparoscopy. I remember being so scared going in, and they knew it. They had let me choose the music, and the last I remember I was singing along to Stone Temple Pilots. When I came out my vision was fuzzy, but he had been trying to show me all the damage it had done. I just kind of nodded my head and began to cry. To this day I couldn't tell you why. I think I was finally just relieved I knew what was wrong with me, and afraid of what was going to happen next. 


I was put on Depo-Provera, and suggested to try Lupron. I had refused after reading others experiences, and all the side effects. Depo has caused me to have osteoporosis at only 16. I struggle with regular bone and joint pain. I also have fybromyalgia. My ovaries look like a moon, covered in craters. Parts of my lower intestine have been linked together, and I have multiple lesions and plenty of scar tissue. Western medicine never offered much help, or relief. That's when we turned to acupuncture. I urge all of you reading this to try it. We had done acupuncture, shock stimulation, and herbal supplements. Although it is expensive, I had never felt better. Due to financial problems that have occurred, I am no longer able to, but if you have the opportunity, please ladies, take it. 


I know I will always struggle to deal with understanding I have limits I have to subject myself to. Blogs like this help us to not feel so alone. Nobody really understands but people like us. There comes a point when you begin to feel mutilated, and incompetent. I have never met people so sweet, and there for people they've never even met until I found all the endo-sister (and similar) accounts on the internet. If there ever comes a day you need a kind word, or to know you aren't alone, an endo sister is there. So to all of you with Endometriosis, remember to fight like a girl. ;)




Thank you for sharing your story Bebe.

If you would like to contact Bebe, you can follow her on Twitter @B_asinBoobs.


Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.

Wednesday, 13 February 2013

My story: Adrienne Le-Guier.


I started my endometriosis journey when I was fourteen; I was losing weight and always in chronic stomach pain. With saying this, the pain was not located in the "normal" place you would find endometriosis. We gave up looking for any hope until April 2011 (I was 17 that year). I ended up leaving my high school due to a severe bullying case. The doctors believed that this pain was possibly due to stress. He did send me to a gastro/intestinal specialist who did mention endometriosis but again due to the pain not being in a "normal place" he put me in for a colonoscopy and endoscopy for the bowel which resulted in nothing being found. This all resulted in me also being diagnosed with depression. I was living with being bullied and in this chronic pain that no one could explain.


Finally a couple of months later my partner convinced me to go back after I experienced an unusual pain in the lower abdomen; my doctor then suggested that a trip to the gynaecologist was needed. I was put in for a laparoscopy in August 2011 and was diagnosed with stage four endometriosis. I went back to the gynaecologist who told me it would never ever attack me again.

In January 2012, the pain started again. Neither the doctor or gynaecologist believed that it could be back so quickly and they kept putting the operation off until I was pestering them so much they put me back in for May 2012, less that 12 months later. Yes it was back and yes It was stage four again. I felt like I had been cheated. The gynaecologist has said that he no longer wants to operate on me due to how quickly it keeps coming back.

Fast forward to this year, I'm starting to feel the pain in my lower abdomen and back again and I have also been dealing with meningitis. I haven't been to work in 6 weeks and I'm not sure when I'm due back. This has definitely affected my life, I may never get rid of the chronic disease, but I truly hope my chance to have children hasn't been robbed.



Thank you for sharing your story Adrienne.

If you would like to contact Adrienne, you can follow her on Twitter @enneirdaeeram or Instagram @enneirdaeeram.


Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.

Tuesday, 12 February 2013

Somewhere in the clouds.


I've been on a bit of a roller coaster since my last 'me' post a week ago. I felt so depressed I didn't want to continue and then over the days, my period eased off, the pain became more manageable again and with that, the cloud lifted a little.


On Friday, I pushed myself to achieve the one goal I'd set myself - to get out in to town. So me and the boy had a wander around the shops and, after spending a little too much money on pretty things, we had a bite to eat. It was so lovely to get out and apart from feeling a bit rough later on in the afternoon, I managed fine. I think I just pushed myself a little too far. After a day of recuperating on Saturday, I managed to get out on Sunday also. We had a bit of a random day... We went to an indoor car boot, then on to an antiques centre where we had a spot of lunch. After that we went to a garden centre where we found robins and cats living inside, and then, finally, to the pet shop where we were greeted by frisky rabbits, all before heading back to the boys house for dinner. It felt like I was almost back to normal. I spent Monday recovering again but apart from being pretty exhausted, I'm don't think I'm doing too badly.


I'm quite pleased with myself at how much progress I've made over the past week. Me and the boy even managed to have some intimate time (finally) and that felt, well, great! I'm still on the same tablets because I don't feel good enough to come off anything yet (I tried to come off my Ibuprofen on Sunday but was in too much pain without it), but hopefully I'll be able to reduce those soon. The bladder problems are back again unfortunately and that is getting to me. If I go to the toilet for a wee, there's either hardly anything there or it hurts, and then, probably because of this, I'm wetting myself. It's frustrating and embarrassing because this should be fixed and I don't know why it's not been.


My moods are still very up and down. I spent most of last night crying and thinking negative thoughts. I've found that happens every time I'm on my own now. I guess I can't expect everything to be magically fixed so it's just something I've got to work at.


I'm having a bit of a catch up with everything now I'm feeling a bit better, so, I'm hoping to get working on some new posts on here, contact everyone that's been in touch with me and then get on with the list of things that are mounting up at home... I just need to find some energy first.


S.

Monday, 4 February 2013

I thought this would be the end.


OK. So, after bleeding almost constantly from my operation anyway, I started my period just over a week ago (a week early) and then yesterday it started properly. Today? Today, I'm in agony. Not even kidding. My back, both shoulders, my arms, my tummy and legs are agony!!

I know the first period is usually worse but this is no different at all to what it was before. In fact, right now I'm in more pain than I have been for a long time - and that's saying something! I'm on more tablets today than I've been on for a while because my usual Tramadol/Ibuprofen concoction is not touching the pain.

Ugh. I'm so exhausted with this. I'm so desperately trying to be positive and keep my mood happier, but I'm not happy. I'm sad and more depressed than I've been in a long time. I can't get out of my hole. My antidepressants are making no difference at all. I want to give up. I'm tired and so fed up with this pain. I can't see past this. Right now I'd quite happily have everything taken out and risk it coming back again in the future for just a few years, a few days of relief. I'm not supposed to be in this much pain after all this. But nothing ever changes. All those months spent trying to be positive and being adamant that this would work and what for? Nothing! It's not worked. I'm sick of trying to be happy for others. I'm in pain and I'm upset and I don't want to live like this.

But it's not like I have a choice right now. At least until April, when I get to see the Prof., this is how it will be.

I feel crap. And worthless. And shit. I have nothing. I am nothing. Why is the boy with me? I can't offer him anything. We can't even bloody move out because I can't work. We can't do anything beyond this bedroom because I can't move! How is this fair on him? It's not. I am desperate to get back to work and earn some money. How is this a life? I know some would be happy for it but being in this much pain on a regular basis? Really? Right now I'm in a what's the point of anything mood.

I'm annoyed too that my pictures on here never correlate to how I'm actually feeling. It's a rare event now when I get dolled up though - no one wants to see what I actually look like right now. Blotchy faced, red, snotty nosed, crazy bed hair and comfy, less than attractive clothing - pyjamas in fact. Ugh.

Ugh. Ugh. Ugh.

I want to give up.


S.
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