Cindy’s Story

On the 24th September 2017, I found out I was pregnant with a baby I would never get to see, never get to hold. A lifetime of things we would never share. My life was at risk. My first surgery would leave scars on my body. I was the 1 in 80 women suffering an ectopic pregnancy. 

I needed support, but more so, I needed to know that I wasn’t alone. I needed my voice to be heard that my daughter existed, however fleetingly. So I went to Facebook and The Ectopic Pregnancy Trust was one of the first pages I came across. Through that page and another for  women who have experienced the same pain, my daughter was validated. She is still validated.  

Three years later I was preparing my first batch of Rhubarb and Rose Petal Jam for my recently started business and it struck me the irony of making a jam using rose petals on my angelversary and so my charity jam was born.

$2 from every jar of Tahlia’s Rhubarb and Rose Petal Jam is donated to The Ectopic Pregnancy Trust. May 19th should have been my expected due date and the date I chose to transfer donations I have raised to this amazing charity. 

It is only a small amount to some but it is from my heart, and through continued sales of Tahlia’s Rhubarb & Rose Petal Jam, not only do I get to continue to support this charity, I keep my baby’s memory alive. 

If you feel inspired by Cindy’s experience and fundraising, please take a look at ways to get involved or email our Fundraising Co-ordinator who is happy to help: jill@ectopic.org.uk.

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#EPT1000 Challenger Spotlight – Celestine

Why did you start your #EPT1000 challenge?
I joined because I knew it was a really big challenge for me and I needed to work on my own confidence after my ectopic pregnancy in 2018. It was a way to give back to the charity that supported me and a nice way to pay tribute to Millie’s memory.

How far have you gone so far?
I have done 391 km so far!
 
What has been the best or most interesting part of your challenge so far? 
The challenge and the support from the charity has given me the confidence to go out walking more and Celebrity Spotting! So far I have met Shelley King (Yasmin from Coronation Street), Chris Gascoyne (Peter Barlow in Coronation Street), Roy Keane and Idris Elba to name just a few. 
 
Do you have a favourite place to walk? 
I live in a big city so I have enjoyed exploring new and old places.
 
Do you have any top tips for fellow challengers?
Be motivated by the group, go walking with friends to help you get out and take lots of pictures for your own memories!
 

If you feel inspired by the Celestine’s EPT1000 Challenge, Please do take a look at the challenge and join our lovely community (Your Goal, Your Way) or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

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Why did you choose your specific 100 challenge?
It was very much on a whim! I knew about the Captain Tom 100 Challenge but initially I’d not thought of anything I could do for it. Then on the same day a friend of mine suffered her 2nd ectopic pregnancy, resulting in the loss of her remaining tube, another friend gifted me her hula hoop out the blue and it just seemed like it was meant to be! I’d not used a hula hoop since childhood so it definitely felt like it would be a challenge to get to 100, but hopefully achievable as I only had 2 weeks to go at that point.

Why did you choose to support the Ectopic Pregnancy Trust?
I’ve been supporting the Ectopic Pregnancy Trust for a while now. After my own ectopic pregnancy back in 2011, it was a massive lifeline for me. At the time, I was a midwife and my husband was an obstetric and gynaecology doctor, so whilst we had the physical side of it covered, I realised just how desperately lacking any emotional support is. The charity helped me to realise I wasn’t alone and got me through some of the darkest months in my life. It was then in 2019 I took on their “EPT1000” challenge, covering 1000km in the year whilst raising awareness and fundraising.

What would you like to accomplish through completing your challenge?
I’m always trying to raise awareness of ectopic pregnancy. Women still die each year in the UK so early recognition really does save lives. I also feel quite privileged to be in a position where I’m able to openly discuss my own pregnancy loss now, and it’s been a real honour when other women have opened up to me about their own experiences they’d previously not felt able to talk about. Plus of course fundraising for the Ectopic Pregnancy Trust. It’s a very small charity but with a big impact on women at their most vulnerable time. The charity not only seeks to offer support to women, but also to their families and medical professionals, on top of constantly striving to improve research and patient care. On top of all of that, I hope that the hilarious photos and videos of my many failed attempts helps to put a smile on my friend’s face as she is grieving her own ectopic loss, as well as her loss of fertility as a result

Lois showcased her new skill of hula hooping by doing the challenge on Facebook Live smashing 100 making it look easy while being cheered on by James and their children Molly and Benjamin.

If you would like to support Lois please do take a look at her fundraising page and also do take a look at the news coverage on the day that Lois appeared in alongside other people taking on challenges.

If you feel inspired by the Lois fundraising experience, please do take a look at ways to get involved or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

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Erin’s story:

Our second pregnancy was long-awaited but unexpected. We couldn’t quite believe it but every test said “Pregnant”. We calculated how far along I was, reconsidered holiday dates, felt our lives start to shift around this new person who would be coming to join us in eight months. I started to feel a bit fatigued and was off my food. I’d been dead on my feet and sick as a dog with our son four years earlier; I mentioned to Oli in passing how the symptoms didn’t feel as strong this time around.

And then there was blood. Brown and thin, just the tiniest smear really. But three days later it was still there, without fail, every time I went to the toilet, and then the pain on my right side started. Sharp and sudden, it took my breath away, I had to go and lie down. Eventually it passed to a dull stitch-like ache. The blood kept up. So I rang 111, who told me to go to A&E where I sat alone, masked, for hours, just to be told that I was too early along to be scanned. They took my blood, confirmed my hCG was high and so I was definitely pregnant, but sent me home to wait out the ten days or so until I would calculate at seven weeks and could come into the Early Pregnancy Unit to be scanned.

And for those ten days I continued to bleed that watery, brown blood. I continued to ache on my right side. But I continued to feel my pregnancy symptoms, even if they were more muted than they’d been with my son, so I held on to hope that I wasn’t going to miscarry. I scoured the internet looking for hope, other women who’d bled and pained all through their first trimester and gone on to have healthy pregnancies and children; that’s when I came across The Ectopic Pregnancy Trust’s website. And as I read and absorbed the information I felt a chill – so much of what was described here was what was happening to me.

I went to the seven week scan. Oli was allowed to come into the room with me. The technician looked so hard, I could feel through the wand just how much she didn’t want to give up that there was a sac there somewhere. But eventually she withdrew the wand without turning the monitor to me and said she was sorry, there was nothing in the uterus, and it didn’t look like there was anything in the tubes either. I went to have my bloods taken again – they said they would take them every 48 hours to make sure my hCG dropped, otherwise I’d have to come back in for further investigation.

The next night I started to bleed in earnest. And I was relieved. This was the miscarriage I’d been dreading, but I’d been dreading needing any sort of medical or surgical intervention more. I rang the Early Pregnancy Unit and told them I was bleeding. They told me to take a pregnancy test in three weeks’ time and come back if it still said Pregnant.

It was more than a week before the bleeding stopped. The food aversions and nausea slipped away. We put our positive pregnancy tests away in a little box. And then, a few days later, I was working and rocked back in my office chair – it felt like I’d been stabbed, on that same right side. I ran to the bathroom. I was bleeding again, but this time it was bright red, like I’d just cut my arm. The pain was so awful I was doubled over. I drove myself to A&E. I begged them to help me, to scan me. I said repeatedly I feared it was a ruptured ectopic. I lay out all the reasons why I suspected it. They kept me in a side room on a straight backed chair for seven hours. I paced and rocked through the pain like it was early labour, watching the clock and popping paracetamol at every opportunity.

The A&E gynaecologist came in and out. She listened to me but she didn’t seem convinced. I asked her to examine me because I was sure that the red blood I was bleeding wasn’t normal in relation to a miscarriage. She didn’t – she told me that a wide range of bleeding and pain was “normal” in baby loss. They were waiting for that night’s blood tests to come back to confirm I was still “pregnant” but there was a delay. I begged them to let me do a urine test, which turned positive straight away. Again, I asked them to scan me and she said they didn’t have the keys to the ultrasound rooms.

At 3am the gynaecologist returned and told me to go home. I was stunned. She said she’d finally received a copy of my seven week scan and it showed her that I had last ovulated from my left hand ovary and so it was “very, very, very unlikely” that my right hand side pain was due to an ectopic pregnancy. “You don’t need to be in hospital,” she said. “You’re not in dire straits.” She told me to medicate with over-the-counter painkillers, hot water bottles and bedrest. “Unfortunately, miscarrying is painful,” she told me, with a shrug. Then she told me to call the Early Pregnancy Unit after the weekend and go back under their care until they could confirm my hCG was down to negative. In a daze I left the hospital and drove myself home in the dark.

The next night my right Fallopian tube ruptured. The whole night is a bit of a daze. I remember being on my bed on my hands and knees groaning through the pain. I was so gaslighted by what the doctor had said to me I just considered it a miscarriage, and pressed a lukewarm hot water bottle against the intensity of the pain. In the morning I got up with my little son, went through the motions of my Sunday, the pain in my side now reduced to a sluggish throb.

On Monday morning, I went to the Early Pregnancy Unit for another blood test. But the nurse couldn’t get a vein. She sent me away to have a walk, have a drink. But nothing. My blood pressure was through the floor. She started asking me about what had gone on at the weekend and her face turned more and more alarmed as I recounted my symptoms. She disappeared for a while and the next thing I knew I was back in the sonogram room where I’d received that bad news weeks earlier. And there it was – right up by my right ovary. I’d been internally bleeding for days at this point and (after a hurried Covid test and a hyperventilating call placed to Oli) I was immediately rushed to surgery. I cried and cried as they put the oxygen mask on me. I’d somehow known this is where we were going to end up. I couldn’t help but focus on the thought that if I’d been listened to earlier I could have saved my tube, although of course, not the baby.

The next day I came home, a little bit sore, a lot heartsore. I was straight back on The Ectopic Pregnancy Trust website for details on what to expect going forward. I scrolled through the forums when my head kept me awake at night. Knowing that I could call the helpline and speak to someone about how I was feeling and get answers to my many, many questions quietened my anxiety. But I was still so angry about what had happened to me and I didn’t want to talk about it aside from with closest friends and family.

Eventually, I realised something. If I’d had a ruptured appendix, I’d have had no problem shouting from the rooftops about the trauma I’d been through. Why was the fact it involved pregnancy and baby loss stopping me from doing that? If anything, it was more important to speak up. I kept thinking that if I had only had one friend who had experienced an ectopic pregnancy to speak to back when I had my early suspicions, I might not have felt so alone, I might have had more strength to push further with the medical professionals who kept telling me to go home and wait and see what happened. I hope that one day I can be that experienced friend for someone else.

So Oli and I decided we wanted to both raise awareness about ectopic pregnancy and give back to the charity that had underpinned and supported our experience. As a family of three we decided to walk (or run or cycle, as opportunity arose!) a collective 150 miles around our full-time jobs during the 30 days of April. Given we are with our little son (who stops to pick up every stick, examine every bug, kick over every mound of earth) for the majority of the time, this is a real challenge! We opened up about what had happened on our social media and the outpouring of love and support was amazing. Friends who I’d never known had experienced baby loss reached out and we grieved together. We had a £300 fundraising target – as I’m writing this, halfway through April, we are on £1,420 and counting.

It means a lot to us to both be able to honour our lost child while we give back to a charity and a community that has given so much to us; The Ectopic Pregnancy Trust simply needs to be around to do exactly that for many other women and families in the future, and it will always be a cause close to our hearts.

If you would like to support Erin, Oli and William please do take a look at their fundraising page. where you will also see their regular updates and photos.

If you feel inspired by the Meakin’s fundraising experience, please do take a look at ways to get involved or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

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Lucy’s story:

I had an ectopic pregnancy in February 2021, having had two miscarriages in 2020.

I remember clearly sitting in hospital and being told that my baby could not survive, one of my Fallopian tubes had ruptured and I had to have emergency surgery, within the hour, as I had 500ml of blood sat in my stomach. Another pregnancy loss….not again…please. I was devastated.

The hospital staff were lovely and gave me The Ectopic Pregnancy Trust information pack…..it’s really helped me. It answered lots of questions I hadn’t even thought about, reassured me about the feelings I was having, and where I could go to for more support.

After my surgery, I lay awake that night in hospital unable to sleep. I went onto the forums and saw lots of different stories and how they were focussing on something positive, I even sponsored someone whose story really moved me.

It was then that I thought I would focus on something to try and help me heal that would also help others, so I thought I would grow 1000 plants for the EPT. I thought I could grow plants to look at in my garden and give them to other people to make them smile whilst also helping to raise awareness about ectopic pregnancies and miscarriages. I’m hoping to get a greenhouse at some point so I can grow lots from seeds!

Since our ectopic pregnancy, my partner and I have had SO much love and support from family and friends. People sent and made flowers (our house looked like a beautiful florist for a month), candles, homemade gifts, chocolates and food. I also had a lovely call with someone from the Ectopic Pregnancy Trust who made me feel that I wasn’t alone and how I was feeling was normal….she gave me hope in the darkness.

A crocheted daffodil gave Lucy hope and support during those difficult early days

Talking about my experience has been so powerful. I’m very lucky to live in a little village and there is a group of six of us that meet in each other’s gardens (Covid allowing) or have been walking/running in smaller numbers. Since talking to them, I’ve found a number of us have had pregnancy losses and, by sharing our experiences, it’s enabled us to feel better and help each other at the same time. We are never alone.

I’ve started an Instagram page called Roses2Rhubarb so I can share what I’m trying to grow and changes in my garden and have already raised £200. I have always found gardening to be such a great healer…. whether that’s been seeing things grow, switching my brain off from all the things/worries I’m having, or achieving things that I didn’t think I could. My Nan and Grandad (Bapa) loved their garden, so I hope I’m doing them proud too.

I’m hoping I can raise some money to help other women who experience an ectopic pregnancy and to help both women and men to realise it’s ok to talk about these things…. together we are stronger.

Gardening can really help, if we just give it a try.

If you would like to support Lucy please do take a look at her fundraising page. and don’t forget to follow her on Instagram Roses2Rhubarb.

If you feel inspired by Lucy’s fundraising experience, please do take a look at ways to get involved or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

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Victoria’s story:

I found out we were expecting our second baby in November 2020. We were extremely excited. Two weeks later, I started to experience pains so I rang the early pregnancy helpline and they advised me to go and checked to be on the safe side. After a long wait in A+E I was sent home and told to wait for a phone call to book me in for a scan (unfortunately this all happened on a Saturday and the early pregnant unit was shut so no scans on offer.) Fast forward 6 hours and my husband found me collapsed upstairs, he rang for an ambulance and I was rushed into hospital. My memory is a bit of a blur after this. My husband was told that I was very poorly and had been internally bleeding due to a ruptured Fallopian Tube resulting in losing our baby and my right Fallopian tube. I had to be resuscitated, put on life support, and given six blood transfusions in theatre. Luckily I woke up and I was alive. I had 3 small scars on my tummy that would be a reminder for the rest of my life of an extremely scary time. 

I was released from hospital a week later, I was struggling with movement and very simple tasks. Luckily for me I have a very supportive family. I was longing to feel normal again but I knew that It was going to be a long journey. My hospital mentioned The Ectopic Pregnancy Trust to me so when I felt strong enough to start dealing with the emotional side I sat on my laptop and read through their page. One week later I was sat on a Zoom group call with five other amazing women who shared their story, listened to mine, watch me cry and gave me advice. It was incredible. I walked away from the Zoom call feeling emotionally exhausted but so much stronger. Raising money for The EPT is the least I can do. 

Training and why I am doing the GNR 

Fast forward again 4 months… I began running once the hospital told me it was safe to do so. I was a runner before but never long distance. I found that the first couple of runs I went on after my ectopic pregnancy I was replaying everything in my head, it was so tough but before I knew it I had ran 5 miles…..the longest I had ever done. I began aiming for longer distances and last week I completed 11 miles. I was so proud of myself for achieving this. I reached out to The Ectopic Pregnancy Trust when I had seen them post about the GNR. I couldn’t quite believe what I was getting myself into but I signed up anyway and they accepted me!! I hadn’t shared my story with many people and I knew that if I wanted to raise lots of money then I would need to write about it. So a couple of days ago I sat with a glass of wine and wrote it down and posted it. I was then flooded with messages from friends and donations, it was such a weird emotion, I was so so happy but sad that I had been through something like this. I know this will help my healing process, it already has in a way. I will be forever grateful for the trust and I urge everyone to go and look at the symptoms, it could save lives and prevent a situation like mine. 

I have started my training and I am loving it, taking it slow is the key and I am so fortunate to have a husband who is a runner. He is going to run The GNR with me for The Ectopic Pregnancy Trust as he owes them just as much as me. He has his wife back and a healthy one at that!

If you feel inspired by Victoria and Cai’s fundraising experience, please do take a look at ways to get involved or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

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Vix’s Story:

My name is Vix and I’m a photographer from Mid Wales. I have suffered 2 ectopic pregnancies which both got diagnosed on the same day 2 years apart. I had my first ectopic in February 2019. This really affected me and my mental health. I ended up having my right tube removed and I went on a spiral of self-destruction after this, which led to me leaving a job I loved and was good at to go to a job in which I was bullied and really pushed me into a depressive state. When the first lockdown happened in March 2020 I started working from home in which I thought this would help me gain back control, unfortunately the bullying carried on and I ended up leaving my job and setting up my own photography business. 

I really found that this was a great therapy for myself and I focus my work on empowering women, capturing their pregnancies and their breastfeeding milestones and family growth. 

In February 2021, I was diagnosed with my second ectopic pregnancy. This took a lot of pushing from my side to the GP’s as I honestly think they thought it was in my head because it was the exact same timeline and symptoms as previously. Luckily as I know my body, I knew something wasn’t right so I pushed and pushed which led to be being referred to the EPAS ward at my local hospital. I went and had my scan alone and they found internal bleeding, in which I was then sent to a larger hospital around 90 minutes from my home in which I was treated with methotrexate. 

Having to attend all my appointments alone was the hardest thing due to covid. Not having my husband there for support but also for him not knowing what was happening to me and being said was also really difficult. It was harder to connect with medical professionals due to masks and PPE. It was like there was a barrier between you and them. 

Even though I still have my left tube, I have opted not to try for any more children because of the trauma from both of my experiences and want to ensure my own safety for my daughter, Freya who needs her mum more than I need a second child. I have decided to focus on building awareness and funds for the ectopic trust so they can help more women like myself. 

On Monday 22nd March 2021 I braved the shave and raised £2180 for the trust. I am so proud of this and will continue to raise much needed funds for such a fantastic cause. I am currently in the process of gaining my masters in photography which I am focusing my project on fertility loss and ectopic pregnancy and I am making a short film about my journey with a film maker friend, Gwyn Cole at Still River Films and cannot wait to share this with you. 

If you would like to support Vix with her fundraising, please take a look at her fundraising page.

If you feel inspired by Vix’s fundraising experience, please do take a look at ways to get involved or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

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Philip is passionate about raising awareness and he is driven to talk about the devastating affect ectopic pregnancy from the partner’s point of view, which is often overlooked. It is important to recognise that partners need support too and it is just as brave to acknowledge and ask for this. It is crucial to have partners’ perspectives and Philip’s honest, brave and heartfelt account can reach and help others to understand the ordeal. 

Please be aware that this personal experience references emotional distress and risk of suicidal thoughts. If you are affected, help is always available: https://www.samaritans.org/ and https://www.thecalmzone.net/.

Philip’s Story:

“When myself and my wife found out she was pregnant, she was rushed to hospital within the next 24 hours due to having an ectopic pregnancy. The hospital first said it was fine on initial examination through ultrasound scans, but then she experienced excruciating pain. The next morning, less than 24 hours from finding out we were pregnant, we found out we had lost the baby and I had nearly lost my wife. It was a very frightening and emotional experience for us resulting in a lot of mental health appointments and issues still affecting us now. It is something you can never “just get over” in your lifetime. We still think about it to this day. It’s not something we thought would happen to us or something you think about at all – but if it does happen, support is there to help anyone who needs it.

We were both unaware of The Ectopic Pregnancy Trust charity when we had the ectopic pregnancy. We now know that they support both partners through these difficult times. Had we known, we would have asked for support instead of struggling and trying to come to terms with the loss and traumatic experience on our own.

The hardest part for a man is to be the support foundation for the woman and to hold the family together too at such a difficult time. There are a multitude of emotions – from the stress of losing a child, to regret and sorrow and “what if I could have stopped it”. There can be feelings of fault and, when faced with not just losing a child through an ectopic but nearly losing your wife aswell, it is very difficult. I was under mental health support for approximately a year due to it and had to stop work because of suicidal thoughts. It is like a train that just keeps going and getting bigger and bigger. There is no easy way to deal with the problem. I bottled it up and tried to keep going and be supportive, but in the end, I took the fall for it and suffered mentally.

Things won’t be the same for a long time. However, being able to talk to the EPT and share experiences with people going through a similar experience does really help. A lot of people think that the woman has had the ectopic and the operation so comfort them. However, the man also has to bear some of the scars – mainly emotional.”

The Ectopic Pregnancy Trust supports partners too and offers a safe space to talk for men and women affected by the condition.

If you would like to support and help Philip with his fundraising, please take a look at his fundraising page.

If you feel inspired by Philip’s fundraising experience, please do take a look at ways to get involved or email our Fundraising Co-ordinator who will be very happy to help jill@ectopic.org.uk

The post Philip to Compete in the Yorkshire Tough Mudder 8-10 Miles Challenge appeared first on The Ectopic Pregnancy Trust.

We are so very grateful to Leanne and are very excited to follow and her journey and watching her tick her miles off, she has even invested in a treadmill to enable her to keep walking the miles inside aswell as outside. Please do read Leanne’s amazing article in her local paper

If you feel inspired by Leanne’s EPT1000 fundraising please do take a look at how to get involved or email our fundraising co-ordinator who will be very happy to help jill@ectopic.org.uk

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Rebecca and Matthew have been through a long and hard journey dealing with early pregnancy complications. Rebecca has recently listened to her body and fought for her scan as she knew something wasn’t right. We are so glad we were able to be there for her in her time of need as Rebecca said “when I had sleepless nights the forums helped me to relax and put my mind at ease when I was suffering with ectopic symptoms. I honestly don’t know how I would have coped without the help of their website and forums.”

Please do read their heartfelt story which they have very bravely shared in their local paper, the Liverpool Echo.

If you feel inspired by Rebecca’s fundraising experience please do take a look at ways to get involved or email our fundraising co-ordinator who will be very happy to help jill@ectopic.org.uk

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