The Family Patch

A Flash of Yellow (Endometriosis Awareness)

                                                                                                        label design by Kaye Sedgwick

If you're new to the Patch you may (or may not) have noticed I have a page on the blog entitled "Endometriosis". But to be fair I haven't written about it in a good long while so I'll let you off if you hadn't noticed. But go check it out...

And if you're an older reader of the Patch you may have noticed that I haven't written about the topic for quite some time. I do believe my last post was this one. 

But why have I not been writing about it much? Have I been spared the pain of Endo since giving birth? Well, not quite!

I have to admit that my periods have been less painful and more regular than ever before with or without the use of contraceptives and for that I have been grateful. But my life has still been far from easy. We've had to deal with the after-effects of my pregnancy first and foremost and all the things that come with being parents to a new baby. But I've still had an ultrasound and two visits to the gynaecologist and am now on yet another form of contraception (the only option we'd never tried). And for me the trade off is hard... I'm ill without the contraception but I generally get other side effects with whichever one I take. And it's balancing which is more preferable. So, yes, my periods are better and I would say quite hesitantly that they are the best they have been for a very long time, perhaps ever. But I don't expect it to last. And besides "better" does not mean "good". 

But as I say, they have come slightly lower down my list of priorities this year than a lot of things. I am heavily involved in research on Hyperemesis Gravidarum as I am writing a book about it. Though there are limited resources out there for Endo sufferers, there are even less for women who suffer from HG. And with a baby to take up my time, I just haven't had the chance to write much about the Endo stuff.

Which is why I was so very excited when I heard about A Flash of Yellow, a flash mob of women who were all going to wear yellow, and raise awareness in three locations in London on 1st September by striking silent poses that symbolise what life is like living with Endo. Kaye, who organised it, has written a great post about the day, please do check it out. 

I wanted to be there so much. I bought my yellow clothes. I chose some yellow-y clothes for Little Man. I made my preparations. I started putting some money aside each month for the train tickets. I thought we were good to go...

And then last week I went to look at the train times and discovered to my horror that it was going to cost us at the very least £40 per ticket. That meant at least £80 for two of us (there was no way I was braving the train AND underground with a pushchair on my own!) and that didn't even include the tube fares. 

Now it's no secret that money is tight here at the Patch. You might remember I got some pretty snide comments last year from someone who believed I shouldn't be having a baby when finances were less than ideal. Thankfully my friends and blog readers all rallied round to defend me (thanks everyone). But what I never full explained was why we're on such a low income.

And the why is this: I have Endometriosis

Endometriosis is a chronic condition. It isn't just a couple of days of pain each month and then you're fine and dandy. It is a daily battle. 

It wasn't until I had Little Man that I realised I had been going to school, uni and work for years in the same level of pain as early labour (I remember the doctor who had come to hook me up to an IV when I got sick during labour commenting on how calm I was to say I was in active labour and I pointed out quite calmly that I had worked in this type of pain and had been expecting more!) 

It also wasn't until I had Little Man and hit transition super quickly after they broke my waters that I realised the very worst of my periods, the ones that had kept me in bed in terrifying agony for hours on end, were the same intensity as transitional labour (you know, the bit where you're begging them to give you a break and start saying "I can't do this anymore!")

And when you have irregular periods, never knowing when they will arrive, you cannot plan for this. It can catch you out at any time. 

Add in the blood loss from heavy periods, the anaemia that sometimes comes with it, the awful treatment from the medical profession telling you "it's normal" and having to hide how you feel because a) no one gets it and b) no one wants to know about your cycle and you've got a lot to deal with.

And that's before the surgery, the crazy hormonal treatments they put you through, and the fact that there is no cure and you're faced with this for many, many, many years to come.

And all of this led to my coming out of work and our decision to live on a single salary. 

I used to work full time in a busy tourist office. I was on my feet all day. I had to commute on a village bus that meant I was out of the house between 60 and 70 hours every single week. And during the 18 months I worked there I went through two chemically induced menopauses and surgery. And dealt with huge amounts of pressure from HR and my manager for my absences.

I turned up to work in agony. I went back to work a week after surgery despite being told to take at least two weeks off, because of that pressure. And I sat in the office and cried. 

And I developed depression. I realised this was never going to change. I couldn't keep going out every day and putting on a brave face only to fall apart every evening. And I knew that if we were ever to try and start (and raise) a family I would need more strength and energy. Endo isn't just a threat to your fertility, it is also a drain on your ability to give all you want to your kids if you're lucky enough to have them.

In Spring 2010 I left full time work. I left a job I loved because I just couldn't do it anymore. It was a hard decision and one I still worry about but ultimately it was the right one for me.

Endo didn't rob me of my fertility (despite being told at 21 I could have issues, including an increased risk of an ectopic pregnancy due to my fallopian tube having been twisted) but it robbed me of an awful lot of other things.

And that includes money. 

I don't want lots of money. It would just be nice to be comfortable. And be able to turn up to things like A Flash of Yellow because I had the money to spare. But I don't. The money I would have spent getting there and back would feed my family for two weeks. It's a no-brainer when you put it like that. But it still hurts...

I am passionate about raising awareness of and supporting women with Endo, just as I am with HG. Neither one takes precedence because both have negatively affected my life in so many ways. But with my focus on the HG book of late (and it being very strong in my mind because of how it has robbed us of the dream of a larger family) I have written more about that of late than about Endo. Which is why I have written this post.

Endo may not be the major player in my life right now like it used to be, but don't be fooled. It is still around, still hiding in the background and making its presence felt every once in a while. And I know it will be back. It always comes back. 

And for the 1 in 10 in the UK who also suffer from it, this is their reality too!

Please do check out Kaye's post about their day in London

And check out the Endometriosis SHE Trust for more information and to support the charity. 

 

 

 

The End of a Long Year!

My latest article for iVillageUK focuses on preparing for the birth of our son next month. As you all know, pregnancy has been incredibly difficult for me physically, mentally and emotionally and although becoming a parent is going to be a real challenge, I am ready for the end of the pregnancy and our new life as a family of three to begin.

I often feel as if time has changed over the past few months and it's as if I haven't really been here, but locked in my own strange little world of pregnancy woes. And yet, looking back at the very first article I wrote for ivillage I realise just how much has changed and how crazy it is to think that it hasn't even been a year since I started writing these weekly articles. 

In fact, I am pretty sure that the beginning of my series on Endometriosis and Trying to Conceive started around the same point in September as my baby is due. Now that is rather mind-blowing when you think about the fact that the series started from the uncertainty of coming off birth control and trying for a baby. 

It was truly difficult to keep the news of our pregnancy quiet until the end of my first trimester, especially when I was so sick. I continued writing articles on trying to conceive because I had thought it would take us much longer to fall pregnant and so had many topics I still wanted to cover. But it was very strange writing them when knowing we had been blessed with our little man. 

And so when I was invited to continue writing my articles from a pregnancy point of view I was thrilled. What better opportunity can someone who loves writing and sharing experiences possibly be given than to write for such a website? And suddenly I was writing about a whole new range of difficulties and Endometriosis was rarely mentioned.

Don't get me wrong, I am loving writing about pregnancy and am happy to say that I have been offered the chance to continue writing once the baby is here from a parenting point of view. But it does leave me wondering whether I am neglecting a cause I feel really strongly about: Endometriosis Awareness.

Just because I fell pregnant and haven't had so many issues directly related to Endometriosis in recent months, it is still very much a part of my life. I wonder how I will be after the birth. Will my periods return quickly and will they be as painful and troublesome as before? What might be different? And how will it affect my ability to be the best mother I can be if I am ill on a regular basis?

And the closer I come to giving birth the more I wonder about this and the more I realise that I seem to have come full circle, so to speak. My emphasis is on my long-term health again rather than the difficulties of pregnancy and I am determined to use my voice to raise awareness of Endometriosis, as well as so many other things I am passionate about. In fact pregnancy has given me more things to campaign for, such as better research and support for those suffering from such debilitating conditions such as hyperemesis and PGP. 

I'm all for using my own experiences to help direct my writing and work, and yet it has been hard to know what to write of late as there is so much running through my mind. So it has been wonderful to have guest bloggers share in spreading the word about Endometriosis. If you missed it, please do check out Danielle's post explaining all the work she has been doing to raise awareness of it. And don't forget to enter the giveaway for Jen's Endometriosis Awareness Tote Bag/Hot Water Bottle Cozy and Purse. You only have until Friday to enter (by spreading awareness in one of the four ways described at the end of this post) and it would be a shame to miss this opportunity to get the word out and make a difference in any way you can!

 

Endometriosis Awareness: free crochet pattern and giveaway!

Good Morning!

Today I have a real treat for you. My "crochet guru" Jen has kindly created a very special crochet pattern that I'm sure you'll love as much as I do.

I'll let Jen explain the pattern herself, but please don't just "skip" this post if you're not a crocheter. The pattern is actually remarkably simple once you understand the basics and I shall be having a go at it myself once I get some yellow yarn. And even if you are absolutely certain you'll never pick up a crochet hook, you could still get a hold of the end product, courtesy of Jen's generosity and a little giveaway we have planned. So read on and all will be revealed...

I’ve known Amanda since she was a teenager. It seems pretty incredible now that the only time we actually met in person was a luncheon in Glastonbury in 2006. 

The world of online community brings people together in a way they never could before. Where else could the inquiring mind of a middle aged American woman with a family meet the inquiring mind of an English university student under circumstances in which they become friends? Seriously, I ask you?! It’s an amazing thing, and even more amazing now that she is married (hi Tim!) and expecting a son soon. (I, on the other hand, am still a middle aged American woman!)

But I digress! It’s not only inquiring minds that Amanda and I share, we share a love for crafting. Between us, we’ve shared ideas, recipes, patterns and tips. I’ve used her as an excuse to try my hand at projects like the beaded Dream Tree...

...the crocheted cabled Tree of Life afghan...

...and to create the best mix cd of love songs EVER.

I’ve felt helpless though in sharing her journey through endometriosis. While I could offer moral support, it upset me to see the physical, emotional and mental pain it’s brought to her over the years. We’ve all felt it, wanting to fix something for someone who is suffering… it’s very difficult to feel helpless isn’t it?

Normally when I am feeling helpless, I practice ‘random acts of kindness’ and they help me feel more connected not only to the ‘family of man’, but to my own priorities. I help the old woman at the grocery to reach her favorite jam on the top shelf (I’m tall, it happens). I pick up someone’s tab at a restaurant (very rewarding, you should try it!). I spend a day picking up trash at the lake (you’d be surprised how other people join in). These little extensions of myself fill me up in a way nothing else can.

Then, Amanda had an idea! Her idea is to combine my love of crafting, and crocheting in particular, with the cause of endo awareness. Brilliant! So, here we are… I created this hot water bottle cozy with a yellow awareness ribbon, in hopes it will not only bring awareness but comfort to a woman in pain. 

The exact same pattern can also be used to make a tote bag, and I’ve included a pattern for a small pocket purse for carrying personal items as well (because you know we all do!).

When Amanda asked me about it, I spent a couple of days simmering with ideas. I decided on this “illusion crochet” ribbon not only because it’s cool, but because it is symbolic of hidden issues, and the work so many are doing to bring them to light. If you look at it one way, it’s simply striped...

but change your perspective a little and the ribbon appears.

You can find the free pattern here. I wrote it with beginner crocheters in mind so don’t let the look intimidate you if it is a new technique. If you get stuck you can reach me through my blog with questions.

We’ve also come up with a way for you to win this one from me! (Amanda will fill in the details)

The process of creating these items reminds me that we don’t have to move mountains to make a difference, we just have to make an effort to share our gifts as they are… when we all come together and contribute in our own way, those mountains will begin to move themselves!

So, do you fancy being in with the chance of winning an awareness tote bag/hot water bottle cozy and purse?  Can you picture yourself receiving all of this in the post?

 

I can tell you from experience that receiving a package from Jen is a true pleasure. So what are you waiting for? 

As this is designed to raise Endometriosis Awareness, you need to spread the word in order to be in with a chance of winning this giveaway. 

How to enter: 

1. Leave a comment on this blog post saying what you like about the pattern, whether you'll be trying it out, and why you'd like to win this giveaway.

AND/OR

2. Follow me on twitter using the handle @amandaspatch and then retweet my tweet that says "Want to #win a handmade totebag and hot water bottle cozy, while raising awareness for #Endometriosis? Then RT this"

The giveaway will close on Friday at midnight GMT, any entries after that will not be counted. The winner will be contacted by email, so please be sure to leave your email address when leaving a blog comment (this will not be visible on the blog itself). The winner will be officially announced on Monday next week and the items shipped as soon as I have received the postal address of said winner. 

I am extending the closing date for this as there has been very little interest this week and I want to give people a chance to see it and take part. A new "end date" will be confirmed later on, so for now, why not have a go?!

Good Luck!

I hope that makes sense, any questions just ask. 

***************************************************

For more information, help or support, please consider visiting the following websites:

Endometriosis UK

SHE Trust UK

Endometriosis and Pregnancy

I'd like to say a quick thank you once again to Danielle for her brilliant guest post the other day. Please do check it out, and don't forget that her radio interview on the Pelvic Messenger is scheduled to start at 6pm GMT tomorrow (Thursday 28th July). 

It felt great to get some new information and thoughts on Endometriosis onto the blog as I have not written about it myself for such a long time. Part of the reason for this is that due to the intensity of my sickness and physical discomfort during my pregnancy I have had other things on my mind. But in talking to Danielle I realised something that I hadn't consciously accepted.

With Endometriosis being a major cause of infertility, being one of the "lucky ones" who managed to fall pregnant not only without medical interviention but also very quickly meant that I felt a certain uneasiness in sharing the news of my pregnancy and drawing attention to Endometriosis. Despite never having written solely about Endometriosis, I knew that posts about the topic could come up in search engines and bring new readers to the blog who were trying to come to terms with their own fertility issues and to then have them see pregnancy related posts seemed like it might be a smack in the face.

Things were made doubly difficult by the fact that pregnancy has been incredibly harsh on my body. I have been very ill from the word go and it has been an immense battle to keep going most days. I tried not to write too much about my struggles, again for the reason of not wanting to hurt someone inadvertently. And so not only did I steer clear of writing about Endometriosis, but I also limited my writing about Hyperemesis Gravidarum which, like Endometriosis, is a under-researched condition that is often poorly managed by the medical profession and scoffed at by those who believe it is merely "morning sickness".

And yet, despite all of this, there have been many times that I could have written about Endometriosis and pregnancy. Without a doubt, being able to have a baby is one of the most beautiful things and I am so glad that my husband and I escaped the heartbreak of infertility. But at the same time, having had such a challenging pregnancy I know I couldn't do it all again. Most people respond to this with the words "you never know how you'll feel once the baby is born" and "that's just because you are feeling so sick now". What they fail to see is that it isn't just the Hyperemesis Gravidarum making the decision for me (although that is a key point in the way I feel). What they do not realise is that life isn't as easy as deciding to have a baby and simply going for it. 

My husband and I had to think really hard about when the best time for us to try and conceive would be. I have suffered with painful periods since my early teens and since 2005 have had two laparoscopies, gone through two chemically induced pseudo-menopauses, and spent an awful lot of time struggling to cope with the demands of everyday life. Completing my degree was difficult when I was so tired all the time. Commuting and working in a busy environment was almost impossible on my worst days. And making the decision to relocate so that I could work fewer hours each week was exhausting in itself.

We did everything we could to ensure that I went into our pregnancy journey as fit and healthy as I could be. But it wasn't enough. I didn't have much in terms of reserves of energy and getting through the nightmare of Hyperemesis Gravidarum was one of the hardest things we have ever had to do. Despite finally being on anti-emetics, I still feel sick a lot and add that to the pain of unstable joints and regular period-like cramping and stabbing pains which we think are caused by possible Endometriosis adhesions being stretched, and you'll see that pregnancy is not as easy is it first seems in our case. We may be able to fall pregnant naturally, but at what cost?

Don't get me wrong: I would never dream of comparing the hell of my pregnancy with the hell of infertility so many women have to face. But what I am saying is that it is so easy for people to misunderstand what I'm saying and even judge me harshly for it. I don't blame any woman who might read this and think "I'd go through as many 'difficult' pregnancies as possible if it meant I got to have my baby" because I know I would think the exact same thing were I unable to fall pregnant myself. But having experienced it I know that I could never do it again.

I have previously touched on my feelings regarding pregnancy, but it was only when talking to Danielle that I realised just how deep the discomfort this issue brings runs. By worrying about inadvertently upsetting someone I guarded my posts from ever truly touching on Endometriosis, which is still a major aspect of my life. It is almost like there are two groups people affected by Endometriosis, those whose fertility is unaffected and those who face infertility due to it. There are so many groups out there for women facing infertility and within that group there is another division: those who never get the chance to be parents and those who do. I've often read the blogs of women who previously found so much support from the infertile community only to wonder where they fit in now that they are expecting a baby or have a family of their own. And if it's hard for them to know what to say and do, having experienced the same feelings as the readers and friends they now worry about upsetting, then it's certainly hard for those of us who never had to face such things.

But does that mean that we should keep quiet about our own experiences and put on a brave face to hide the pain we are suffering ourselves? I feel almost like I have forgotten why I started writing about Endometriosis in the first place. My initial series on iVillageUK was about trying to conceive and mentioned Endometriosis a lot because at that time I had no idea how my fertility might be affected. Since becoming pregnant and starting a series called "a pregnancy journey" I have barely mentioned Endometriosis and it saddens me that I am missing a great opportunity to spread awareness through such a widely read medium. 

I remember talking to someone about how I would broach the subject of pregnancy on here and deciding that I would try and be as honest as I could about it because that it what this blog is all about. I write about life, my life in particular because that is what I know best after all, and that means writing about every aspect of it. Endometriosis may not be at the forefront of my mind during pregnancy, but it is always nagging away somewhere behind the more obvious things I'm dealing with right now. I worry about how soon my periods will return after the pregnancy is over. I wonder how bad the Endometriosis symptoms may be. I think about the fact that despite so many treatments over recent years the Endometriosis continued to grow and cause more and more havoc on my life, so what is my next option: do I try another form of birth control or see what my body does on its own for the first time in years? And how will all of this affect my ability to do all I want to as a mother? 

Yeah, there are many things I could write about regarding Endometriosis even during pregnancy, and even if there weren't I could still be promoting the work of others like Danielle, because at the end of the day Endometriosis is a chronic condition and it's going to be with me for a long time. But finding that balance between writing about it and trying to ensure I don't come across as "rubbing my pregnancy in other people's faces" is a difficult one. Yet it is one I need to find because if I am to live up to Danielle's kind words about me and the work I do for Endometriosis Awareness, then I need to be writing about it much more frequently than I have in recent months. 

So stay tuned for some new projects and ideas I have regarding Endometriosis over the coming months and please do get in touch if you are, or know someone who is, trying to live live with Endometriosis. It would be great to hear from you. 

And as a last thought, why not consider following me on Twitter? I finally built up the courage to overcome my complete lack of knowledge regarding it and joined up last night. You'll have to give me a few days/weeks to get to grips with how it works, but it would be great to see you there too. My username is @amandaspatch 

Guest Post: Danielle Bevan Jones on Endometriosis Awareness

I mentioned a while back that I had some guest bloggers lined up for The Patch and I am delighted to introduce you to the first of them.

Danielle is a real inspiration of just how much any one of us can achieve once passion and determination for a cause grabs a hold. I'll let her tell you her own story and exactly what she is up to. And please, let's leave her lots of comments to welcome her to the blog!

Firstly, I'd like to say a massive thank you to Amanda for asking me to write this blog post. I don't want to sound like some smarmy sychophant but it really is an honour to be asked, as the work Amanda does for Endometriosis Awareness is great and it has been wonderful to hear her story and get to know her. So now (well deserved) flattery is over with, I can get on writing this post.

I expect you'll want to know a little about me now, I mean I could get all philosophical about life, love, loss and coping, then draw some conclusions and introduce myself to you that way... It seems a little contrived to me, that method, and besides, you'd be very disappointed if half way into this post you discovered that I was some hateful witch sauntering around in haute couture smelling of vomit and million pound eau de parfum.

Right, well, I don't smell of sick, I'm as poor as a church mouse, and whilst I do have a tendency to get my broomstick out when provoked, I've never hated anyone in my whole life. My name is Danielle, I'm 23, a not-quite-single mother of 1, student, Film-Maker, charity trustee and Endometriosis sufferer. There, that was quite concise wasn't it?! We got there in the end.

Like many Endometriosis sufferers, it took me several years to convince my several doctors (including a psychiatrist or two) there was something wrong with me, resulting in my eventual diagnosis last year (January 2010). The feeling was, as many Endo Girlies will agree, bitter sweet to finally know what was wrong, yet face an incurable and chronically painful condition for the rest of your life. To add crippling insult to injury, my (then) partner decided he’d had enough and left. Supportive (please note sarcasm - it doesn't come across well in text I've found - you should see my face right now) 

Thankfully, this cued the entrance for not only my thirst for knowledge about this little known and under-researched condition, but also the arrival of my DREAM MAN who understands! And luckily for me, DREAM MAN (lets call him DM from now on) helped me pick up the pieces, introduced me to the world of documentary film-making and joined me on my mission to raise awareness of Endometriosis.

I switched courses at University, and DM and I decided that we would start making a documentary about my story and living with Endo. What started out as a 9 minute film for a piece of coursework, soon changed. The more that I found out about the condition, the more passionate I became. The more I went through treatments (such as laparoscopic excision and Prostap), the more that I felt people should know about Endo. And the more that I found out about the facts and figures (1 in 10 women have Endo! 80% sufferers are undiagnosed and the majority, unaware the condition even exists! It takes on average TEN YEARS to get diagnosed) the more I thought to myself, “Right, something NEEDS to be DONE about this and I’M GOING TO BE THE PERSON TO DO IT”. And with that, the film and the research began to take over my (and DM’s) life. Lets get this straight now though – I’m not complaining about this at all. I love my work.

 

I began my mission to raise awareness, contacting Television Shows, Radio Programmes, Magazines, Newspapers, started up the My Endo What?! Facebook Group, and even got over my Twitter phobia in order to start tweeting celebrities in the hope of an RT or a #Trend about Endometriosis surfacing (N.B. I still do not understand Twitter and never will, but I do pretend). It didn’t work. My ever-growing research led me to the Endometriosis SHE Trust where I began a firm friendship with Dian Shepperson Mills (author of Endometriosis: A Key To Healing and Fertility Through Nutrition, Founder of the Endometriosis and Fertility Clinic, and Chair of the Endometriosis SHE Trust). I often refer to Dian as my second mummy because she is a truly fabulous woman and a fountain of knowledge and I feel privileged to say I know her personally (much like my own real mummy).

Inspired by Dian and the work of her charity, I soon began to promote the Endometriosis SHE Trust, and after 5 months of unsuccessful attempts to get the media interested in Endo (and my work) this happened: An interview on BBC Radio Wales, 22^nd December 2010.

 

Soon after, at a film festival that DM won an award at, I met two graduates from my University course who now run an independent film company. I briefly mentioned what I was doing/planning to do, and before DM and I knew it, they had introduced us to a Television Production Company who share my passion to get this film commissioned, made and aired on National TV. Since that meeting, things have slowed on the film front due to faffing with paperwork, proposals, taster tapes and a lack of funds for the necessary Broadcast standard equipment (yawn all very boring stuff, I know).

However, I have spoken on Lorraine, ITV,, and been invited to join the Endometriosis SHE Trust’s Board of Trustees (a great honour!) as well as embarked on a political campaign, lobbying  several MPs in the hope of gaining better health services for Endometriosis sufferers, money for research into treatments and that ever elusive ‘cure’. I like to call it my Endometriosis: It Doesn’t Have To Be This Way campaign (excuse me while I LOL). I try my hardest to speak to the girls on my Facebook Group on the chat window every night. I have met some truly remarkable women in the process, including the fabulous Elisabeth Oas, of Save The Last Dance fame – playing Diggy (I’ve done it again, she really will kill me this time!) who’s Radio Show I will be appearing on this week. WARNING: SHAMELESS PLUG!! This Thursday 28^th July 2011 6PM UK Time @The Pelvic Messenger, also available on demand afterwards!

While it may sound a little masochistic, there are many things that I am actually grateful to Endometriosis for. It weeds out the unnecessary and unsupportive people from your life and introduces you to amazing people you would have never met otherwise. Some of the girls from the support group have actually become firm friends of mine.I’ve been places and spoken to people that I would never have approached in the past. And although I suffer almost every day, having this condition has actually encouraged me to go out, find hope, meet people, boost my self confidence, and as a result not only am I working for a cause I truly believe in, but I’m now pursuing my ambitions and life goals too.

And now I must bid my goodbyes to you lovely followers of Amanda’s Blog, to continue my mission to raise awareness of Endometriosis and spread hope to those who suffer from this chronic, painful and incurable condition. After all, we have Endo But Endo will not have us. Thank you so much for reading this, I hope we got through it in a fun and (slightly) amusing way? Please (whether you have Endo or not) please feel free to join me on my journey, you can follow my blog, join the Facebook Group, subscribe to my YouTube Channel or (and I quote) send me short timely messages on Twitter @daniellerachael.

Thanks so much for reading. Take Care, Much Love Danielle xxx

 

Pregnancy: Your Thoughts...

Today I am going to ask something that has the potential to be rather controversial, and very painful for some. And I'd like to apologise in advance if this upsets any of you because of your own personal experiences, but it is something that I have been thinking about a lot and that I feel is worth discussing even if it is difficult. 

So before I begin, I'll just leave this quick warning that if, for whatever reason, you find the discussion of pregnancy difficult right now, then you might want to skip this post. 

I'd also like to say that I really hope that as many people as possible can get involved in answering this question with their own personal take on it, no matter what angle they are coming from. The very reason I am writing this post is because I want to know how people truly feel about this, and to find out the range of thoughts, feelings and opinions there are regarding this. So please do leave a comment, if you feel you can, and perhaps even pass on the link to anyone you think might be interested in having their say too. As always, any comments left will be unmoderated (unless, of course, they are abusive to others or simply spam!) so it's pretty much a case of "whatever you feel, please do write it and know it will be read". I fully expect there to be differences of opinions, and all I ask is that you respect that this is the case and try to remember that there are many people out there for who this subject is extremely painful.

So, on with the question... it is in several parts, so please bear with me!

Would you consider pregnancy to be one of the best experiences of your life, no matter what difficulties you faced either getting pregnant or getting through the pregnancy itself?

OR

Given the opportunity, would you rather skip the "pregnancy experience" if it were possible to have a baby without 9 months of your body being pushed to (and beyond) its limits, and the many months before and after pregnancy that just add to the emotional and physical challenges?

Are you still with me? Confused? Let me explain a bit more about this question and where it came from.

If you've been following my blog for a while you will know that this time last year my husband and I were unsure whether my Endo would cause us fertility trouble. So you'd be forgiven for thinking that now I am pregnant I would consider pregnancy to be one of the best experiences of my life. After all, with so many couples facing infertility, the very fact we conceived the second month of trying should mean we are overjoyed by our luck. 

So let me first say that, yes, we are overjoyed, more than I can say. There was a time a few years ago when I thought my Endo would be so bad I wouldn't even feel able to try to conceive. So for us this pregnancy is a real blessing and has actually run very smoothly in terms of the health of the baby (i.e. we never had any bleeding scares, all our scans have shown normal growth etc). But, in terms of my health, pregnancy has been one of the hardest experiences of my life.

And that is saying something, because with Endometriosis I have struggled through years of pain, heavy bleeding, surgeries, hormonal ups and downs, and many various treatments. I am not new to nausea, pain and emotional turmoil, but pregnancy has taken me to new limits. Hyperemesis Gravidarum meant that for the first 3 months I was unable to even get out of bed without retching and putting almost any food in my mouth made me gag. I won't go over this again, other than to say that I lived in my own personal hell, where the simplest of functions such as even talking to someone could make me sick and so it felt like the world was continuing on its normal route through life and I was somehow apart from that. 

If you've never been that sick then you probably can't understand that during those first few months I actually resented being pregnant. I felt immesely guilty for such, because I knew how lucky we were to be expecting a baby, but I still resented being so ill. My sickness continued at a slightly less intense level but still enough to stop me gaining weight and doing everyday things long past the halfway point of pregnancy and even now that I am anti-sickness medication I still suffer from daily nausea and extreme exhaustion. Added to that is the pain of hypermobile joints and an unstable pelvis (causing PGP), meaning I find moving around very difficult, and the sudden appearance of period-like pains and stabbing pains, we think are caused by adhesions or scarring from the Endo being stretched and you'll begin to see why pregnancy is far from the best experience of my life!

So when a friend of mine commented recently that she considered pregnancy one of the best experiences of her life, I had to stop and think about how I really felt about it all. I have been saying for most of this pregnancy that I would never, ever do it again. And that has been hard because I would have loved to have a second child in a few years time and I feel robbed of that opportunity because there really is no way I could do this again. I know my limits, and although I possibly could go through it again, I actually don't want to. It's not a matter of whether it is physically possible for me, but rather that emotionally and mentally I am not willing to go through such dark times again. 

For most people that is impossible to understand. In fact I feel incredibly guilty for grieving the fact that I can't have an "easier pregnancy" when for some people pregnancy itself is impossible. And in that respect I also understand when people say that I will forget all about this once the baby is born and once my broodiness sets in again I will be willing to go through it again. But at the same time it irritates me that people assume that I don't know my own limits and think that I am just naively reacting to a difficult situation. There is no doubt that I am reacting to a difficult situation, but there are so many reasons why for us another pregnancy is not really an option we are willing to consider. 

Which leads me to the second part of my question: "Given the opportunity, would you rather skip the "pregnancy experience" if it were possible to have a baby without 9 months of your body being pushed to (and beyond) its limits, and the many months before and after pregnancy that just add to the emotional and physical challenges?" 

Tim was always certain he only wanted one child and I always felt that I wanted more. It was something we were going to face in the future, deciding when the time came. But since going through this pregnancy I actually fear falling pregnant again and having to face it all again with a young child in my care. And although I have started to accept that maybe we will be a one-child family, Tim has started to think maybe we shouldn't rule out expanding our family in the future. Which has led us to look at alternative routes.

Thankfully, we are both very open to the idea of adoption or fostering, if we find ourselves in a place where this is possible. And although we know that taking that route will be very different and may mean that our relationship with an adopted or fostered child will be different to that with our own child, especially if we end up with an older child who comes with challenging past experiences, we feel that we could love and cherish and nurture such a child as much as we will the one I am currently carrying.

But I know that for some people the absolute ideal is to have their own biological children, and adoption is not really something they would choose over pregnancy. And to be fair, had I had an easier pregnancy I would have liked to have tried for another child naturally. But if we do decide to look at adoption in the future, it will be a choice we have made rather than our only option as it is for some people. And in that respect I am much happier to say "yes" to the second part of my question than some people might be.

Yet I still find myself wondering about the relationship you build with a child and how and why for many people (including ourselves) trying to conceive is such an important part of our dreams for our own family. Despite being happy to consider adoption, I do feel sad that never again will we see our baby on an ultrasound and this is the only time I will ever experience a baby wriggling around inside of me, helping to build a bond before it is even born. 

I asked this same question on a pregnancy forum I am part of and several people said that an easy pregnancy doesn't necessarily mean a stronger bond, and a harder pregnancy can still be completely worth it in the end. And with the advances in fertility treatment over the past couple of decades, more and more people are being given that chance to try and achieve that ultimate goal of experiencing pregnancy themselves. And I completely get that, because although we had considered adoption as an option previously, I still wanted to try for a baby of our own. It is a very instinctual thing. 

But, still, I know that if we do decide to expand our family in the future, I would much rather choose the adoption route next time than face another pregnancy like this one. For many people this is completely incomprehensible, and the only thing I can think of that makes is an easier thing for us to consider is that we had previously discussed adoption as an option because we wanted to give a child in need a chance of a family life so it isn't something we have come to because it is our only option. 

Of course, this is all completely invalid for many people. I have read too many infertility blogs to know how expensive and difficult adoption can be for some. And I have read too many heart-breaking posts from those who have faced cycle after cycle of fertility treatment in the hope of having their own child, only to end up childless or with only one child when they wanted a bigger family and are totally wiped out financially because of having to take the route they have.

Which is why I ask these questions in the first place. I want to know how others feel about pregnancy and what level of sacrifice they are willing to go to in order to have the family they always dreamed of. And as I said at the very beginning of this post, I know it is a difficult question and may well bring out some controversy in terms of answering it, because it is an entirely individual and personal choice. But I would still like to know how you feel about this. 

And, again, I apologise if this is a deeply painful topic for you, as I know it is for many. I don't ask to hurt anyone, simply to know more about what we so often think is such an easy and natural thing, but is actually very complicated for so many of us.

Thank you for reading, and if you do feel you can comment, please do. 

20 weeks

Note my ever so sexy blue seabands... having worn them almost constantly for the past 4 months I have almost permanent indents on my wrists. In fact, having gone a good 36 hours without them recently I noticed that the area where the pressure is applied looked darker, almost bruised even after a break. I cannot wait until the day when they are no longer necessary!

This is an exciting week for us as we've finally reached the midway mark in the pregnancy. It has often felt like we would never get here, especially with how sick I have been, but here we are!

We are going for our anomaly scan tomorrow and hope very much to find out the baby's gender. Before I fell pregnant I was absolutely adamant that I would not want to know until the baby's birth. But, since being pregnant my patience has dwindled and I have come around to Tim's way of thinking that it would be nice to know now and begin being able to talk to "him" or "her" rather than "it". 

I won't be announcing the baby's gender on here just yet, as I have decided to tell the grandparents and great-grandparents to be in a way that is going to take a bit of time. It involves sending a little something through the post to make the announcement to them, and so I will not be making it public on the blog until I know every single member of the family has found out. But this just gives you all a little bit longer to have a guess as to the baby's gender and see if you are right... go on, have a guess and leave a comment and we'll see how many people guess correctly!

The pregnancy is becoming very real now, rather than just something in the back of my mind that was overshadowed by how ill I was feeling. The little one has started moving around like crazy and I think we're going to have a real mover and shaker come September! It was only a couple of weeks ago that I finally became able to distinguish between the movements and "gas", but now they are becoming so strong that it is possible to actually watch my bump moving at times. It is a strange experience, but a very comforting one, especially when I feel a movement when I'm feeling a little bit down.

And I still am feeling a bit down from time to time as I am still getting sick some days and my sleep is being disturbed by terribly painful hips. My GP decided last week that as I have had blocked sinuses since January that would not clear despite my best intentions with steam inhalation and squirting salt water up my nose, then perhaps I have a sinus infection. So I am now on antibiotics and I have to say that I am hoping so hard that it really is an infection and this will finally kick the post-nasal drip that keeps making me gag. The remaining nausea that comes from time to time is annoying but bearable, however the gag reflex is stressful and upsetting, so I do hope it clears soon. 

And as for the painful hips, well it turns out our suspicions were correct. It isn't just my hypermobility causing problems, but an assymmetrical, unstable pelvis. The physiotherapist I saw gave me some hints and exercises for helping to ease the strain and I am waiting for a maternity support belt in the right size to fit my bump and I am trying my hardest to do all I can to limit the strain put on these areas, but it is difficult. 

Pregnancy is a blessing and we are so very grateful to have reached this point, but I will sure be glad when September arrives and my body is my own again! It was never the greatest body in terms of health and fitness, but at least when it was just me it had to sustain it had a chance... trying to grow and nurture a baby has taken a real toll on it and I think it will be very glad too to go back to just supporting me! So here we are, on the countdown to September...

Expecting...

Please note: this article contains images and information regarding pregnancy

 

Oh my...

I have been wanting to write this post for the past 2 months, ever since I first took a test and saw the faintest of lines. But, like many, I decided to err on the side of caution and keep the news until after a certain milestone.

Have you guessed yet? 

 

Yes, that is the first image we have of the most amazing person in our lives... our baby.

I am currently 13 weeks pregnant, and thankfully coming out of the hell that is the first trimester. I'm not going to lie to you: there were times when the going got so tough I actually resented being pregnant. And that was not something I expected to feel in a million years. 

Now, I know how incredibly lucky I was to fall pregnant so quickly... stunned is not a word that covers quite how emotionally surreal the whole thing seemed when we first saw that second pink line and tested again and again over several days to check that it was indeed the real thing.

Statistics show that approimately 40% of all women with Endometriosis suffer from fertility issues of one kind or another. That's almost half, and we had prepared ourselves for a long wait, and perhaps even facing the dreaded infertility diagnosis further down the line.

So, I spent the two-week wait between ovulation and taking the test looking for symptoms, and the week following the test in absolute ecstasy. At that point I was just overwhelmed by the fact that my body had, for the first time since my periods began, done what it was supposed to do. How could I not be happy?

Then the sickness began. 

one of many days/weeks spent lying in bed in my pyjamas, hoping for the nausea to pass

I had naively expected morning sickness to be similar to the nausea I felt prior to and during my period... sickly and annoying, but manageable. What I hadn't expected was the hypersensitive gag reflex that meant that anything from trying to swallow certain foods through to simply getting out of bed to walk to the toilet would start me retching. I ended up spending weeks 5 through 10 terrified of doing anything that would set it off, and weeks 11 and 12 wishing the gag reflex would settle down as the nausea had.

At its worst (around weeks 7 through 9) I struggled to get enough liquid down, surviving on a measly 400ml per day. I faced hospitalisation due to dehydration and only managed to stay home because my body somehow managed to survive on that small amount of liquid: had there been ketones in my urine to indicate otherwise I would have been shipped off to hospital straight away.

Throughout all this I couldn't help but feel guilty that I resented being pregnant when so many women struggle to achieve the same fate. The joy and anticipation I had felt right at the beginning was quickly replaced by desperation and depression: I was stuck in bed, day-after-day, dreading the times I had to move, eat or even talk some days. I dreaded anything happening to the fetus, and yet wished for an end to the misery of my own personal hell (I'm not sure if I've mentioned this before, but I have Emetophobia or a fear of vomiting and though I have learnt to deal with nausea through the years, this constant urge to retch was new and terrifying!)

I am sad that the experience was marred by this, worried that I couldn't provide the best possible nutrition for my body and the new life it carried, and felt like a failure for constantly saying "I can't ever do this again, let's only have one child!" I feel cheated in my own way, that my body has yet again amplified the symptoms that most women feel to a point where my life no longer felt like my own. The Endometriosis may not have stopped me from falling pregnant, but my body did not react well to the high levels of pregnancy hormones, and I feel like circumstances are forcing me to decide to only go through this once in my life.

But, here we are, at 13 weeks, with a picture of the baby who we will meet in 6 months time. Our lives are changing forever and we couldn't be happier (or more petrified!) And now the nausea and retching is gradually easing up, I feel ready to talk about it and share it with you all.

But before I go further, I wish to make it clear that I never, ever want to alienate any readers who may be struggling with fertility issues, but I know that I will need to share the ups and downs of pregnancy on here, as the Patch is a place I use to write about my life. All my posts are written from personal experience, and so pregnancy will come up from time to time. I just wish it weren't the case that so many women face the struggle that they do to reach this point.

A couple of my fellow "Endo sisters" who blog have just had FETs (Frozen Embryon Transfers) and I wish so hard that they will also be sharing their happy news with us all. But the timing just reminds me how important it is to remember how lucky I am to have fallen pregnant naturally and how mindful I must be of the different journeys some couples have to take and how I will never, ever understand the pain of that and must never take for granted anything in life.

For now, though, I just wish to share this news of ours and relish in the moment for just a little while before returning to more regular posting.

From tomorrow I will also be writing a weekly article on pregnancy over at iVillageUK. This is to replace the TTC articles that I have previously been writing. I hope that you may decide to pop over once in a while and see what is going on over there too. You will find the articles on the Pregnancy and Baby Channel.

Tomorrow...

is a big day for us!

I have been pretty much MIA since just after Christmas and there is a reason, but I do not feel 100% happy sharing that reason until after the fact... just in case.

Blogging will resume as normal after this, but please do spare a thought for us... we are mostly excited but just a tiny bit nervous.

See you tomorrow xx

Endometriosis Awareness Month

March is "Endometriosis Awareness Month" and I would like to draw your attention to some of the amazing women who are working to raise awareness of this condition that affects so many women in so many ways.

If you have been following this blog for a while, you will know how I left my previous workplace due to health issues caused by Endometriosis. You will also have seen that I started writing a series for iVillage on the concerns Endometriosis can cause when trying to conceive.

I have done all I can to raise as much awareness as I can for this, but the strength of awareness lies in the sheer number of women working for the same cause. And so, this post is dedicated to two of those who have really caught my attention with the sheer determination they have to raise awareness.

Please remember, though, that this is not an exhaustive list, and that I would welcome any comments directing me to the writings and work of other women whose aim is to raise awareness of this "life-altering" condition.

Jeanne, over at chronichealing.com, works tirelessly to raise awareness of Endometriosis amongst a variety of other chronic conditions. She has also set up a petition, which now has over 700 signatures, all working towards raising awareness and understanding of Endometriosis. To take part in this yourself, click on the image below:

Then there is Danielle.

 

 

I was contacted by Danielle towards the end of last year regarding the film she is making about Endometriosis, and I have to say that I was incredibly impressed by the work she had put in already to create something so visual and informative. 

I cannot wait to see the finished product, and would highly recommend keeping an eye out for her work in the future, as she has contacted so many women, organisations, charities etc to gain as great an insight into the condition as possible.