fertility

He’s here at last! My pregnancy and birth with endometriosis and adenomyosis.

/ Endo Lady UK / 5 Comments

I’m happy to announce that baby Barney FINALLY arrived five weeks ago. I say finally as he was fifteen days overdue (!) in the end and arrived by emergency c-section as he flatly refused to be born! 😀

I still can’t believe I have a baby boy after years of fertility struggles owing to severe endometriosis and adenomyosis. It’s really surreal but I don’t take a moment for granted, even in the most sleep deprived moments.

I thought I’d give a little overview of my pregnancy and labour journey on here as I never see much written about this online with regards to endometriosis and adenomyosis. I imagine my experience is pretty individual though as these diseases tend to affect us all so differently, but thought it might be useful to share anyway.

Pregnancy
Aside from morning sickness that lasted for seven months I was actually in a moderate to severe amount of pain at times throughout my pregnancy. This felt like a stretching and ripping pain which I attributed to my adenomyosis and adhesions having to stretch despite not being made of the most stretchy substances. The worst part was you can’t  take any heavy duty pain killers in pregnancy so I just had to just grit my teeth and get through it. It felt quite alarming at times but my medical team never really seemed concerned, and all was well with myself and the baby throughout the pregnancy thankfully.

Birth
I never went into labour naturally. When I was fifteen days overdue things were getting slightly ridiculous and the baby was getting distressed so I agreed to be medically induced. This kind of broke my heart as I was hoping for a natural birth but accept that these things happen. My induction failed however as I did not dilate past 2 cm- hence the emergency c section! (FYI- Being awake for major surgery is CRAZY! Not sure I’m keen to repeat that in a hurry.) Lots of guess work here but I wonder to what extent having a uterus riddled with adenomyosis affected it’s ability to contract and dilate. I imagine it didn’t help. Not sure why I didn’t go into labour in the first place though- stress perhaps?

Ultimately, although I didn’t have the birth I imagined I am just thankful beyond words that Barney is here and we are both safe. Recovering from a c-section is proving to be tough for me (currently on my second post-op infection- yay!) but I am just trying to look after myself and take things one day at a time for now.

I spent so many years thinking having a baby would never be possible for somebody like me with severe endometriosis and adenomyosis who had been trying for years without success. I don’t really believe in miracles or fate or anything but I’d like to offer some hope to other women in my situation that things can work out and that you never know what’s going to happen in the future.

I’d love to hear your fertility/ pregnancy/ birth experiences with endometriosis and adenomyosis. Do you feel these conditions affected your plans for a family? 

With love,
Claire
xxx

My fertility journey with severe endometriosis and adenomyosis: An ode to Heal Endo.

/ Endo Lady UK / 4 Comments

This post originally featured on the fabulous Heal Endo website. You can see the original version, along with a very kind into, here.

————————————————————————————————————

I remember waking up from my first laparoscopy with my surgeon hovering over me. ‘Good news, it isn’t cancer’ she said. ”Bad news, you have endometriosis and it’s really bad, it’s EVERYWHERE”. She recommended that I go to see my GP to have the Mirena coil fitted. ”Oh, and come back and see in a year when you’ve been unable to conceive, if that’s what you want” she added.

And that was my terrible introduction to the crazy world that is life with endometriosis. I was 25 years old. I had never even heard of endometriosis and no explanation was provided. Not that it was a huge surprise after some speedy Googling- I had been suffering with severe period pain, fatigue, bowel and bladder pain, as well as shoulder pain since I was 12 years old. These symptoms had worsened over time and become increasingly debilitating to the point where I was considering dropping out of my PhD studies as I felt too ill and exhausted to continue working. I was hospitalized with diarrhea so severe at one point that I almost died of dehydration! A year later a diagnosis of severe adenomyosis followed.

The news that I had a chronic and incurable condition that I would have to somehow manage for the rest of my life was more upsetting than the fertility bombshell at the time. I was only 25 and having children hadn’t ever really crossed my mind at this point, despite recently becoming engaged to my partner Simon. I joined a local support group and did lots of reading, and decided the best course of action for a chance of recovery and to boost my fertility was to have excision surgery, which I underwent in London two years later.

While excision surgery helped to reduce my pain and symptoms significantly, I soon realised there was a huge difference between ‘having less pain’ and ‘feeling truly well’. Two years post surgery I had also been unable to conceive which was making me feel anxious, depressed, and like a failure. Like many of my endo sisters I turned to natural approaches with the aim of prompting my health, and started following the ‘endo diet’ religiously. I cut everything- gluten, dairy, soy, meat. You name it, I didn’t eat it. I was also pretty miserable (I’m a massive foodie at heart) and didn’t feel that the endo diet was nourishing me in the way that I hoped, as I wrote about in my blog here. I was also punishing myself with heavy exercise daily with the thought that this was healthy and would help me to manage my pain better and to lose the weight I seemed to be gaining despite my attempt to restrict calories.

And that’s where my association with Katie from Heal Endo started. She contacted me saying that she liked my post and agreed that the traditional endo diet is not as healing as it could be and is often counterproductive.  Katie suggested that she could work with me and that with her guidance we might be able to improve my symptoms and make me truly well again. I jumped at the offer! I would try anything, although by this point I felt somewhat skeptical about the impact that a natural approach could achieve. Fertility, I insisted, should be placed on the back burner indefinitely. I knew my body needed to heal and was in no fit state to carry a baby as it was. Anyway, I felt defeated and was reluctant to spend huge amounts of money on IVF.

After completing a barrage of testing and paperwork documenting my symptoms and usual diet, Katie was able to devise an individualized eating and movement plan to start me on my journey to healing. I was slightly intimidated as it represented a huge change to my usual habits as a low sugar plan was recommended for me at first as my glucose scores were through the roof! Strangely , I grieved the loss of caffeine the most as my daily cups of tea had fulled me for years and had become somewhat of a comfort blanket. Instead of daily weight training and running I’d be walking. Still, I persevered and committed 100% as I knew this was an all or nothing opportunity.

What amazed me was how quickly my symptoms started to reduce when following the ‘Heal Endo’ approach. After about two weeks I noticed something truly remarkable whilst driving to work- for the first time in over a decade I was feeling well! I had energy! I actually felt happy! All this while eating more than ever too.

As the weeks rolled on this trend continued- my energy levels increased to what I’d call ‘normal’, my mood stabilized (no more ‘hangry’ my husband joked to his relief), and my bowel symptoms melted away. I enjoyed being able to introduce more foods over time with the focus on their healing benefits (such as pro-biotics) rather than the focus being on deprivation of what was off limits. Also, the food I was making was really tasty- even my husband (the ultimate sugar addict) was able to join in and was enjoying the meals.  Being abler to eat lots of organic grass fed meats, dairy, and vegetables was a joy.

But the biggest shock, three months into my work with Katie I fell pregnant completely unexpectedly. I am awaiting the arrival of my baby boy any day now. I will never forget Katie’s amazed and delighted face when I told her my news. It felt like a miracle but upon reflection I was feeling so well by this point I honestly believe my body was ready at last. Everything seems to have fallen into place, and I am so grateful to Katie and her Heal Endo method for this.

I cannot recommend working with Katie and/or following the advice published at Heal Endo highly enough. It has honestly changed my life and I will be practicing her approach for the rest of my life. She is also a kind and fun person who is open to collaboration and helping you get the most from your own healing goals.

I hope my story can give some hope to other women out there experiencing fertility struggles. I feel like if I could go on to conceive and carry a baby to term with severe endometriosis and adenomyosis then there really is hope for other people too. Katie also has her own inspiring fertility story to tell.

You can read more about Katie’s work on her site Heal Endo or you can follow her on Instagram (@heal.endo).

I’d love to hear more about your own fertility journeys- what you feel helped and hindered the process!

With love,
Claire
xxx

Seasons greetings and happy update :)

/ Endo Lady UK / Leave a comment

Seasons greetings everyone! Hope your Christmas and new year are as restful and pain free as possible.

Apologies that I have not been able to post for a while, a lot (of truly HORRIBLE stuff) has been happening in my personal life which means I’ve had limited time for writing and a significant amount of writers block. I have lots of new articles planned for the next few weeks to please do stick with me.


I just wanted to post a quick update on her to share some happy and exciting news that I have (for once, see I’m not all doom and gloom)… In April I’m going to be having a baby boy! 🙂 Currently 25 weeks pregnant. Still can’t quite believe it- having both severe endometriosis and adenomyosis, and having been trying for a few years with no success. I’d pretty much written myself off fertility wise to be honest with you.

Maybe miracles do happen. Or perhaps it’s luck. Or maybe I’m one of the people I hate who just ‘relaxed’ and then got pregnant- as if that’s a thing. Either way, I got the shock of my life after doing a quick pregnancy test having felt ‘a bit weird’ for a week in the summer.

I hope this isn’t too triggering for anyone but I just wanted to share my good news with you all as so many of your have been such huge sources of inspiration and support throughout my chronic illness journey.

Take care of yourselves, and am looking forward to posting again in the coming weeks. If you need me feel free to drop me a message into my email inbox- I know this time of year can be really difficult, and it is for me too this year, so always happy to talk.

With love,
Claire
xxx

I am currently featuring on The Fertility Podcast to raise awareness of endometriosis.

/ Endo Lady UK / 3 Comments

It’s March 1st- which means it is now officially the beginning of Endometriosis Awareness Month! I’m really excited for all the articles and events planned to raise awareness of this horrible disease over the coming weeks!

I recently had the privilege of being interviewed about my experiences of endometriosis (and infertility) by Natalie from The Fertility Podcast. I will not stop until the whole world knows about my broken lady parts- and why this is a big deal! 🙂

You can check out the full podcast here.

fertility-podcast

I’d love to know what you think of the podcast. Do my experiences resonate with your own? Have you had experience of infertility or IVF? (Also, I am always here for any of you affected my infertility/ endometriosis who needs somebody to talk to, so please do get in touch if needed. Please don’t suffer alone- a problem shared really can be a problem halved).

With love,
Claire
xxx

Can you help to shape future endometriosis research?

/ Endo Lady UK / 3 Comments

Hello lovely endosisters! I hope you are all as well as can be today.

I’m writing this post to update you all about an exciting research project I have had the privilege to help develop over the past year as a member of the Radcliffe Women’s Health Patient Participation Group (University of Oxford). We are hoping to establish a set of core outcomes which can be used in future endometriosis research, which will then make it easier for scientists and healthcare professionals to compare the results of various studies and gain a deeper insight into the disease.

ihome-logo
This post is also a little bit of a call to action and a plea to ask you to take part in this research. Participation involves completing three online surveys over the course of a few months, where you will share your experiences of endometriosis and views on what outcomes doctors and researchers should be prioritising when working to improve the quality of treatments and healthcare we receive.

We have made a short video that explains what we are doing in greater detail:

If you would like more information or to take part, you can visit our sign up page here.

Please do get in touch with me directly if you would like any further information or have any questions. Alternatively, you can contact lead investigator Dr. Martin Hirsch (Queen Mary, University of London) by email: m.hirsch@qmul.ac.uk.

I really am hoping the endometriosis community supports this exciting research opportunity. We can hardly complain that there is a lack of research into endometriosis (which is clearly true and a real injustice when you consider how many people are affected) but then not support the projects when they do take place.

I’d love to hear your thoughts, and whether you’ve been involved in any research projects yourself. Please do share this (on your own blogs and/or social media) with any other endosisters you know who might be interested in taking part- the more voices we have to contribute the better!

With love,
Claire
xxx

MPs will debate decommissioning IVF on the NHS- I’ve had my say, now it’s your turn!

/ Endo Lady UK / 1 Comment

On Thursday 19th January 2017, MPs will be debating whether IVF should continue to be provided by the NHS.

While this is a good opportunity to highlight the plight of those experiencing infertility and to highlight some of the injustices that exist around accessing fertility treatment (e.g. the postcode lottery) I find it incredibly frustrating that such a vital service could be removed from the NHS in the near future.

A Facebook group has been set up by MP Steve McCabe for the public to express their views on this matter, which you can access via this link. I strongly encourage those of you living in the UK to contribute to this if you feel able to, whether you have been directly affected by infertility or not. (A word to the wise though- LOADS of my Facebook friends ‘liked’ my post, so it’s not the most private method of airing your views on this topic!)

outward-smiles

One day I will snap.

Personally, I’m so angry about this! Women with endometriosis are high users of IVF, since the disease is one of the leading causes of infertility in women, and so as a community we stand to loose so much if these services are decommissioned. This breaks my heart as I feel that we endosisters have suffered enough already and do not need or deserve the added stress of being unable to access fertility help.

As some of you may also know, 2017 is the year that I am hoping to access fertility treatment, so WHY THE HELL IS IT GOING TO BE DECOMMISSIONED NOW?! I’m not the type to be prone towards paranoia but it does feel a little bit like the world hates me.

There are also some sinister undertones to this debate that I think are really ugly. Like  how infertility is only the result of ‘lifestyle choices’ and that it’s just tough luck to those that experience it. We need to challenge such thinking NOW, because if IVF is decommissioned on the NHS it’s very unlikely that it will be reinstated.

I uploaded the following comment to the Facebook page:

nhs-ivf
I could have written more, but I started loosing the will to live to be honest with you. I am sure this will turn out to be a frivolous exercise, but it still feels good to publicly air my frustrations and contribute in my own small way to the debate.

I have also emailed my local MP Sir Oliver Heald to ask for his support in this matter, but looking at his profile (rich, white Conservative, old) and his voting record I’m not going to hold my breath that he is going to be a champion of women’s (health) rights. I would certainly encourage you all to contact your own MPs ASAP too though.

What are your thoughts on this matter? Do you think IVF should be covered fully or partially by the NHS, or do you think it is a luxury that should be funded privately? How will it affect you if this service was taken away? I’m also interested to hear from all you endosisters outside of the UK about your experiences of accessing and funding fertility treatment.

Take care all, I know this is an emotive subject and I only wish luck and happiness to each of you.

Love,
Claire
xxx

My fertility is Schrodinger’s cat.

/ Endo Lady UK / 11 Comments

While sitting in the hospital waiting room the other day waiting for my name to be called- it was my post excision surgery checkup, I could feel my heart starting to beat really hard and fast, my palms became sweaty, and my eyes starting to well up with tears. In my hand was a list of questions I hoped to ask in my appointment, most of which concerned fertility. It’s well established that endometriosis is linked to a lower rate of fertility, with increasing severity of the disease further decreasing likelihood of conception. I’m a stage four gal- never wanting to do things by halves, and this has been worrying me since my diagnosis in August 2014. Between you and me, Mr B and I are just starting to try for a baby, so the fertility issue has been on my mind a lot lately.

Sitting in that over lit waiting room  I had a sudden epiphany- my fertility is Schrodinger’s cat! For those not as nerdy as myself, ‘Schrodinger’s cat’ is a thought experiment from Physics, which postulates that it is ‘observation’ (i.e ‘looking’) that makes things real . This short video explains the basic premise very well:

In this scenario the cat is my fertility and the poisonous gas is the toxic combination of my endometriosis and adenomyosis. Good right? My brain fog had clearly recovered enough to formulate a high level metaphor- progress right there!

As I’ve never tried to have a baby before, my fertility is simultaneously dead AND alive- and we won’t find out which until we try. There are no definite answers to be given right now.

The uncertainty of this situation scares me. It follows me around daily like a big black cloud hanging over my head that nobody else can see. I want to beg my doctor for concrete answers about my situation. Perhaps a definite  ”you can’t” would be easier to handle than constant ”maybe you cans”? Although to have hope means something. You never imagine that you will have to question your fertility, it’s just there until you need it right?! I’m in my 20s, this can’t be happening! The pain of this certainty being taken away is just indescribable.

Worrying about your fertility can be a very lonely experience, especially when you have loads of friends who are all pregnant or new mothers.  I’m so happy for them, I’m just sad for me. Maybe unnecessarily sad, but still sad. But I was never the girl who daydreamed about having kids; dressing up dolls and picking out potential baby names. It was meeting Mr B that changed all that. Crafting out our future together I can totally see children in it. I want that. I’m ready! I think I’d be a good mother. He would be the most AMAZING father.

In my appointment, which ended up being with an specialist endometriosis nurse (which was excellent by the way- she gave me an hour of her time and answered all of my questions with a high degree of knowledge and empathy), I tried my best to explain all my fears:
1) How I constantly swing between positive thoughts (‘‘Your Fallopian tubes are clear” and ‘‘You’ve had excision surgery now, that will help”) to negative ones (”Your right ovary is a wreck”, ”You have to much inflammation” and ”You have adenomyosis”) a thousand times a day in some weird fertility related bi-polar.
2) How I’m so scared to come off hormones as being on them has kept me going for most of my life, and because I’m scared that my endometriosis and adenomyosis will go wild without them.
3) And how I’m so scared to face an infertility journey, if that what comes, and am not ready for it. I have become familiar with what it does to people and I feel so guilty for the possibility of my husband never being a father or my mum and dad grandparents.

We can call this 'Plan B'.

We can call this ‘Plan B’.

”You’re a worrier aren’t you?!” my specialist nurse commented. That’s true, but I’d call myself a realist. How can I not be, when I’ve done my reading and met so many people affected by this problem? It’s another example, so familiar to us those living with chronic illnesses, that people ‘don’t get it until they get it.’ They never will.

Right now I can’t answer all of these fears. Nobody can. All I can do is try and see what happens. It’s time to open the box and reveal the kitty’s fate. But I’m so scared to look inside, I don’t know if I can handle what’s in there.

I’d love to hear your thoughts and experiences of fertility with endometriosis and/or adenomyosis. Did you fear the worst but get lucky? Or do you stay positive that things will work out?  Are you aware of actions to take which may help?

Love,

Claire