My Life With Endometriosis

How is life affected by a diagnosis of endometriosis?

March is Endometriosis Awareness Month and, as a sufferer, I wanted to write a blog post to help raise awareness and understanding.

As I’m typing this blog post, reflecting on my own personal journey with endometriosis, I’m in pain. My abdomen feels like it’s contracting and twisting whilst being stabbed with a hot poker, my lower back is on fire and I’m just exhausted. I’ve felt this way, more or less, for 15 years. It’s part of who I am.

Before I get going with the short version of my own journey, I want to give you some facts and figures about endometriosis.

Endometriosis is the second most common gynaecological condition in the UK, affecting 1 in 10 of the female population which equates to around 1.5 million women. There is no known cause and there is no cure. Endometriosis costs the UK economy £8.2 billion per year, in healthcare costs and loss of work. The current average wait for a diagnosis is 7.5 years.

The symptoms are varied, so please have a read of this information. Personally, I have 16 out of the 19 symptoms listed, but thankfully not all at the same time!

My Story

Let me take you back to 2002. It was my first year at university and I was living away from home. I felt fairly stressed and so when I started to get regular, debilitating, stabbing pains in my stomach I put it down to not eating enough and always being on the go. I thought the backache I always had was from carrying heavy books and files, and sitting on small furniture when on placement at primary schools.

Eventually I decided I needed to see a doctor and so began about 6 months of back and forth with the university’s GP practice. First they said I needed to change the contraceptive pill I was taking. Then I was treated for IBS. Then I was accused of having an STD and then finally I saw a sympathetic female GP, who happened to specialise in gynaecology, who told me it sounded like endometriosis. I’d never heard of it. I couldn’t even pronounce it.

I remember taking a book out of the library to find out more about it and I just cried. I read that this was a disease with no cure. That I would miss a lot of time from work, assuming anyone would employ me as a teacher in the first place. That I would need surgery just to get a diagnosis. That I would most likely never have children.

Endometriosis

I had my diagnostic laparoscopy in April 2004. I remember the registrar being so dismissive of me “You know we won’t find anything, don’t you? You’re too young to have this” and I remember being terrified of the general anaesthetic. (I still am, 6 surgeries on).

I came around from the surgery to be told that I had endometriosis which had been treated with diathermy and that they had also removed a large cyst from my right ovary. I was sent home that day with some paracetamol and absolutely no information about my healthcare going forward.

I rang up my surgeon’s secretary a week or so later to ask whether I needed further apppintments or something and she told me that “he removed it all so obviously you’re ok now”. After demanding a follow up appointment I was prescribed a medication which put my body through a false (reversible) menopause.

Discovering Endometriosis UK (then The National Endometriosis Society) was such a lifeline for me after that diagnosis. I used the message boards to chat to others and I found out about the Birmingham support group.

At the first meeting I went to, I met a wonderful gynaecologist. He changed my life. I switched hospitals to be treated by him and over the next several years underwent various surgeries which involved him cutting the endometriosis out, rather than lasering it. At that time, he was one of very few gynaecologists performing this treatment.

After that first meeting, I ended up getting more involved in Endometriosis UK; I trained as a support group leader and co-ran the Birmingham group for a while.

I suffered with endometriosis throughout university to varying degrees, and with that came various challenges. I had to have deadlines extended for a few assignments; I missed quite a few lectures; I missed days at Teaching Practise and had to make them up; and my social life suffered. I was often in pain and couldn’t go out and I very rarely drank because it made my pain worse. I’m lucky that I had a very supportive boyfriend all through university.

Endometriosis affected my work life too. I’ve worked alongside some very unsympathetic colleagues and heard them say things like “it’s only period pain”. I’ve taught a class lying on the floor because I wasn’t allowed to go home. I’ve sat crying in the staff room with a hot water bottle instead of doing my planning. I was warned about having too many days off sick. I almost passed out in pain once and then walked in on a colleague laughing to someone else about it. I was coerced into coming back to work a week before I was medically advised to after surgery.

The last surgery I had for endometriosis was August 2010. I was told that my endometriosis was severe, affecting my bowel and bladder as well. My Fallopian tubes were both blocked and none of the dye they use for the test got through. I was told that I needed to think about if I wanted to start a family because I had more chance of winning the lottery than conceiving without assistance. Andy and I had been together for less than a year at this point.

We made the decision to look into IVF. The IVF appointment and my follow up from surgery happened to fall in the same week and somewhere between the two, we discovered that I was already pregnant. Our second daughter was also conceived naturally a couple of years later.

Endometriosis did not go away during my pregnancies; if anything the pain got more intense. It didn’t get any better after having my girls either. Right now, endometriosis is back with a vengeance. I’m regularly in pain; my daughters are 3 and 5 and they notice. The only reason I haven’t sought any more surgery in the last few years is because of my daughters; I don’t know how my recovery time would affect us all. I’m seriously looking into a hysterectomy as a last attempt at freeing myself from this disease, even though I know it may not work. I’m 33 and I’ve had enough of this disease and the way it has crept into every aspect of my adult life.

Toria

If you would like to find out more about endometriosis, please contact Endometriosis UK, I cannot recommend their support, advice and understanding enough. If you want to reach out and talk to me about it, please do (although bear in mind I cannot give medical advice).

How is life affected by a diagnosis of endometriosis?

Does Criticism Have A Place In The Online Sewing Community?

Does criticism have a place in the online sewing community?

I first discovered the online sewing community when I decided to finally give in and open an account on Twitter. Until then I had no idea that there were so many people out there who shared a love of sewing, particularly as everyone I knew in real life thought it a bit weird that I wanted to learn to sew. Twitter led to the discovery of many of the blogs I love, then Instagram and now I actually have real life sewing friends as a result.

Chances are, you’ve had a similar experience and the internet is fantastic for connecting people through a shared passion who otherwise wouldn’t have crossed paths.

After a few years online, I’m to notice things about the sewing community. Is it just a little too positive? Now I’m all for positivity; we certainly need some light relief and something to uplift us with everything currently happening around the world, and for some of us in our own lives too. I’m not knocking that at all, but I do think this overload of positivity comes with a lack of any real criticism.

I’m going to generalise a bit here and I assume that you sew because you make clothes either for yourself or someone else. I’m also going to assume that over time you’ve improved your skills and want to continue to do so.

How can anyone improve their skills if they are told that everything they make is wonderful?

I’ve posted photos on Instagram and asked for advice on fitting issues and people have responded very helpfully to that. I’ve learnt something and tried to put that into practice. Isn’t that the way it should be? I’d much rather post a photo and have a few comments of “oh that’s a great colour on you, but have you thought about doing a full bust adjustment?” rather than someone telling me what I’ve made is perfect.

I’ve seen the argument made that telling someone they’ve made a mistake might put them off trying again. I disagree. It’s how you tell them that makes the difference. When I was teaching, we had system of marking the children’s work where we’d give them two things we loved about their work and give them one thing to improve on. It worked. They had the confidence boost of knowing their work had some great parts and then they had something to work towards as well. I think giving constructive criticism well is all about how you frame it. I’d never look at something a beginner sewist has made and point out all the flaws, but I would give them one thing to maybe look at for next time.

Why is criticism even important? Why can’t we leave everyone alone and let them get on with it? Ok, I see your point here; people are posting their photos and blog posts online, receiving lots of lovely comments and they go away feeling pretty good about themselves. I have no problem with that. However, if you start to believe your own hype (for want of a better phrase) and believe everything you’ve made is wonderful, I think you’re heading for a crash of self-esteem eventually. That’s not good for anyone is it?

For example, when I started getting involved in Etsy teams, I met a few people who are good at whatever craft they do, but honestly need to make some improvements to their techniques to be able to sell things. They feel sad that their Etsy shop gets no attention and they genuinely don’t understand why, because everyone they know has told them that they’re brilliant. I’d guess that most of the online sewing community don’t want to turn their sewing into a business. But surely you want to make your sewing the best that it can be for yourself?

What do you think? Should we give advice and constructive criticism only when it’s asked for? Should the sewing community remain a completely positive space?

Toria

Does criticism have a place in the online sewing community?

Slow Sundays

We love Sundays. Slow, relaxing Sundays after a busy week are just the best for recharging and recalibrating.

This year we made a conscious decision to spend Sundays at home, just the four of us. Think roast dinners, afternoon films with popcorn, pots of tea, podcasts playing and the occasional walk in the sunshine.

Creative block? Go for a walk!

It was hard to slow down to begin with. It felt like wasted time. We could be doing homework, we could be working, we could be running errands, we could be doing housework; we could be doing a million other things really, but I’m really seeing the value in us slowing down and reconnecting as a family. Enjoying the simple things.

Appreciate the little things

What has this got to do with sewing or crafting though?

The obvious answer is that a slow day at home is an ideal time to get on with some crafty projects. Quite often I’ll pick up my knitting for a little while, or cut out a new sewing project.

More often than not though, it’s time to get crafting with my girls. I’m so happy that they love being creative; Eleanor doesn’t go a day without drawing in her sketchbook lately. I think if children are interested in creative hobbies, it’s such a fantastic thing to help them with that. Let children see the value in being creative.

Eleanor asked me last weekend if I could teach her to crochet and we spent such a lovely hour or so making chains. She turned one into a bracelet and one into a necklace with a charm she’d made and was really excited to take them into school for show and tell. How great is that for a child’s self-esteem and confidence?

Crafting is a wonderful self-esteem builder for children

I also think that having a slow day, with no crafting, ends up being good for creativity too. It lets ideas percolate whilst you’re doing other things. It stops you from being too burnt out to create as well and I think we all need that from time to time.

Here’s to slow Sundays!

Toria

 

💙 She wore blue velvet 💙

It’s almost the end of the week, the sun is shining and I feel like I’ve been crushing my to do list this week. Boom! 💥

So, a World Book Day update… I, ahem I mean my girls, didn’t win a prize for best costume because school apparently decided against prizes this year. Whaaaat?! Still, they loved their outfits and that really is the point.

In other news, I still haven’t finished that scarf. I decided that although I love the mustard colour of the yarn I was using, I hated the feel of it on the needles. I bought some navy blue yarn instead and I’ve started again. Honestly, by the time I’m done with it, it’ll be autumn again, but I kind of like the slowness of knitting. (In my case, I mean my Grandma could knit at an amazing speed!)

Remember I said I was going to get my WIP pile down? I’ve finally finished something I started in December! I decided back in November I think that I wanted to sew a crushed velvet Lady Skater Dress for Christmas Day. In December I had few health issues going on and lost all motivation when all I needed to do to finish it was the side seams and the hem.

Yesterday I dug it back out and finished it and I feel so much better for doing it. It’s one thing achieved from my list and I have something new to wear. It may not be as seasonally appropriate as it would have been in the winter, but I’ll still wear it.

Crushed velvet Lady Skater Dress? Hell yes!

I was pulling a face in this photo, so it had to be cropped out! I’m quite pleased that the colour is ok in these photos, usually when I try to take photos of any dark blue, it looks black. I guess this isn’t as dark as navy blue though.

The construction of this was a cinch, as usual and sewing with this crushed velvet didn’t really make any difference. I used my regular machine (I don’t have an overlocker) with the normal foot and I used clips instead of pins just because I prefer them. The fabric is stretchier than the jersey Skater Dresses I’ve sewn, and I should have taken that into account, but it just means it’s really comfortable no matter how much I eat!

A daft photo, but I like how it flares out when I spin around!

I’m no natural at having my picture taken am I?! This is why I crop my head out of most pictures, I’m always pulling a weird face.

So there you go, my third Lady Skater Dress and definitely not my last. I’m really loving stretchy jersey things at the moment. They’re so much quicker to sew and I don’t think you have to be so accurate with adjustments like you do with a woven garment. Plus, I’m trying really hard to get fit at the moment (karate is such a good workout!) so at least jersey stuff will look ok if I do lose any weight.

Toria

Blogtacular here I come!

I’m feeling a mix of excitement, nervousness, happiness, anxiety and fear right now. Why? Because I booked a ticket for this year’s Blogtacular!

I enjoy writing blog posts, taking photos for Instagram and all that so I thought I’d take the plunge this year. I have no idea what to expect, but I’m hoping to meet lots of lovely people, learn some stuff and just have a day to myself.

It’s a massive thing for me to be doing this; my anxiety levels are at an all time high and honestly, I am worried about how I’ll cope, but if I don’t try I’ll never know. Plus it’s months away so hopefully by then I’ll  be feeling a lot calmer thanks to therapy and lot of crafting!

Toria

Run, run as fast you can…

World Book Day is upon us again! Which is of course means sewing up some fancy dress 😀

Last year, Eleanor went as Sophie from The Tiger Who Came To Tea and won first place which I’ll admit I was pretty pleased about. I couldn’t not make her something this year too.

As always seems to be the case, Phoebe is wearing something her sister has grown out of. (I will definitely have to sew something for her soon, so that she doesn’t always feel like she’s in hand me downs, poor thing.) Anyway, Phoebe is going as Little Red Riding Hood, wearing the cape I made for Love Sewing Magazine forever ago:

This year school have decided on a theme of traditional and fairy stories, I suspect in a bid to limit the number of Elsa and Darth Vaders. Eleanor asked to be the Gingerbread Man and my initial thought was to get her some brown leggings and top and sew ric rac and buttons on them.

During half term I had a much-needed day out fabric shopping and spotted some brown velour on the £2 per metre table in Barry’s. Boom! An idea was born. I decided to get a metre of it and make her a Skater Dress, adding some pink ric rac and buttons. Incidentally if you do sew for little ones, I’d absolutely recommend the Skater Dress pattern, it’s great, but I’ll blog about my love for it another time.

It didn’t take too long to sew the dress together. I made her the age 5-6 size. For reference, Eleanor is 5, and has long legs and a small waist (buying leggings for her is a nightmare!), but as this is for fancy dress I wasn’t too concerned about a perfect fit. As it turns out it’s fairly forgiving around the waist, the length of the skirt is fine and the sleeves are a touch long. So it’ll last a while at least.

Sewing the ric rac on took a while. I tried using my Sewline glue pen to hold it on whilst sewing, but it wasn’t working so I ended up having to put loads on pins in as it kept shifting about on the velour. The girls were both fairly impressed with the “icing” when I’d finished though.

Annoyingly the buttons have ended up a bit wonky, and I’m in two minds whether to take them off and move them. It’ll only bug me though, so is there any point? I do like these buttons, they’ve been in my stash for a while now and were a freebie from Mollie Makes. I think they look a bit like sweets. I do wish I hadn’t been stupid and sewed them on before the ric rac though. Duh.

I’m pleased with the finished dress and, more importantly, so is Eleanor. I guess I’d better get on with thinking about Easter bonnets for the girls next!

Toria

Why craft is good for me

This week I’ve had the sewing machine out for a couple of days making World Book Day outfits and it’s been great. I have all sorts of things going on at the moment, which aren’t suitable for discussing here, but suffice to say it been a tough few weeks.

I’ve made no secret of the fact that I suffer from depression and anxiety, or that I’ve recently been having Cognitive Behaviour Therapy. I also suffer from endometriosis, which has its moments of being debilitating. When I’ve been at my lowest, I’ve tended to avoid sewing, knitting, and any other type of craft but I’ve realised lately that avoiding these things are actually the last thing I should do. I need the distraction.

For me, sewing something simple or something I’ve done before is a good way to refocus and ignore everything else that is going on, even if I can only squeeze in an hour here and there. Last week I sewed up the most ridiculously simple shrug out of a metre of grey jersey I didn’t have any other use for and even though it’s something I could probably  have done in my sleep, I felt like I’d achieved something. Maybe these small wins are what we need when we’re feeling down?

I think knitting is most likely the best go to craft when I don’t have time or I need a quick fix of distraction. Although, for those interested in the progress on my scarf, rib stitch is still eluding me but I will not be beaten! I’m going to have a proper go at it when the girls are back at school (i.e. Not climbing all over me!).

I wonder how many of us participate in craft for wellness? I’ve started a bit of reading about crafting, mindfulness and mental health and so far it’s interesting. I’m hoping to put a couple of posts together on the subject. I guess all I’m really saying in this post is that sewing and knitting are helping me to feel better, and I guess blogging does too.

Toria

Going bananas 🍌

Back in the summer I made my second Lady Skater Dress (first here) and I thought it was about time it made its way onto the blog. Well sort of, because I don’t seem to have a full length photo. #bloggingproblems

I bought this fabric from Barry’s and, to be honest, I’m still undecided about it. I probably should have made pyjamas or maybe t-shirts for my daughters with it. I love the colours and the crazy design but I really feel like a stick out just a bit too much in it. Also, I’ve worn this dress about 4 times since I made it and the fabric has bobbled terribly. But then it was about £4.99 per metre, or maybe less, so what do I expect I guess?

It’s annoying that I’m not more in love with this version, as it’s such a perfect fit. Gah. I made it with three quarter length lengths; I think they’re a more flattering style on me. I also lengthened the skirt a couple of inches which is easy to do; again because it’s more flattering for me I think. Also I wear my pink version with leggings because I’m worried it’s too short, and I’d rather not wear leggings.

This dress is destined to be a wear it round the house kind of thing for lazy days. But that’s ok, at least it is wearable. This fabric has taught me a bit of a lesson really, and I need to think about whether a print really is suitable for what I’m intending to make from it. I do love crazy prints, but I think ones in darker colours work best for me. Fabrics like this are better for my girls. Sorry, banana dress.

Digging through my photos trying to find better ones of this dress, I found this photo from the summer. I like this photo 🙂

Nothing to do with sewing but we decided to make Fimo necklaces and this IS something I wear all of the time! Mine is the top one. I vaguely remember making some button shapes for another necklace, I wonder what I did with those? As next week is half term, we thought we’d spend most of the week doing crafty stuff so there may be some more Fimo jewellery on the horizon.

Toria

We are all fruit 🍉

Saturday! I’d thought you’d never get here! Of course, once you have children relaxing Saturdays are pretty much a thing of the past. We have a birthday party every Saturday for a month soon….

The last fortnight has been a bit of a mixed bag for me, but happily I’m finding time to sew and knit again which is good.

My birthday came and went without any fuss, and this year that’s exactly what I wanted. Andy and I went into Birmingham and visited the museum and generally had a quiet day until the girls came home from school. I did share this photo on Instagram but I saw this in an exhibition and thought it seemed pretty pertinent right now:

World events since Brexit are why I stopped blogging for a bit; it seemed frivolous to be all “look I sewed a pretty thing” but I agree with a few bloggers recently that have said actually whilst things suck we need the distraction of nice things (as long as we’re not ignoring the bigger picture).

So in the spirit of a frivolous distraction, here’s the awesome Cath Kidston dinosaur dress I bought with my birthday money. I’m too cold to wear it right now, but I will live in it soon enough.

I decided that now my hands don’t seem to be hurting as much lately, I’d try to take up knitting again. I can do stockinette stitch now!

 

I really like Tin Can Knits’ Simple Collection which is a bunch of free patterns you can work through to build up skills. I first came across the patterns over a year ago and tried to convince my Mom to knit sweaters for the girls, which she didn’t, so I want to learn to do it myself. Matching sweaters for us all by a Christmas! Well, maybe…

I’ve started with the Wheat Scarf in a mustard colour. On the days when the little one is only in nursery for a couple of hours, I’ve been taking up residence in a new cafe near school and sloooowly knitting away.

I’ll be honest, it’s not going well, although to look on the bright side I have learnt how to use waste yarn as stitch markers and for holding stitches so I don’t frog it too far. I have ripped this back countless times now because rib stitch seems to be beyond my understanding. I know what I need to do and I think I’m doing it right but my tension is appalling and I have muddled myself up a few times (don’t talk to me if I’m knitting!). I did lose my temper completely and frog the whole thing the other day but I will persevere and maybe have a a scarf sometime before the bad weather disappears, haha. Maybe I need a real love knitting person to show me what’s going wrong instead of relying on YouTube videos.

Toria

No more fabric!

It was my birthday last week, so of course when I had some birthday money my first thought was ooooh, fabric shopping! Then I remembered the fabric stash I already have that is a bit out of control and reined myself in. I don’t need more fabric. I need to tidy up.

I spent what felt like an eternity on Sunday going through all of the fabric I have stashed in various cupboards around the house. Even all of my buttons, zips and trims weren’t safe from this de-stash.

The only reason my hoard of sewing supplies has gotten out of control is because I’m easily distracted by shiny new projects. I buy patterns and supplies and then put them away. I get seduced by fabrics I see when I’m out and about (living in Birmingham, this happens a lot) and I think “ooh that’d be perfect for [insert pattern name here] even though I know I have other stuff to do first. Admit it, you do it too.

I know that a fair few sewists pride themselves on the size of their fabric stash and seem to spend every weekend buying more fabric. I don’t understand this mentality personally, especially when you never seem to see them sew anything with that fabric. Each to their own though.

My fabric stash now fits neatly into a drawer in my wardrobe (you know those IKEA ones, that are meant for shoes?). I kind of used the KonMari principles to deal with it all, does it spark joy and all that. But I also made a list of what I’m going to make with it to try to keep me on track. Well, except for a few small pieces that I still love but I figure I can use pieces like that for pockets or lining. I did use a small piece to make a little hoop to keep my pin collection under control (I’m all about the tidying up lately!):

 

I ended up with a small bin bag of scraps that will either go to my daughters’ school or to be recycled and then another bin bag of fabric I know I’ll never use that I’m donating to the charity shop, along with patterns I’ve been given that I’ll never use.

I do feel like I’ve unearthed my motivation for sewing again now, so yay! I’m going to start with a couple of quick projects this week and then I’ll be tackling the pile of WIPs I mentioned before.

I still have no idea what to spend my birthday money on though!

Toria