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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 

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.