Endometriosis affects around 1 in 10 women and those assigned female at birth in the UK, yet it still takes an average of eight years to diagnose. For many, that’s years of heavy periods, back pain, exhaustion, and being told it’s “just one of those things”. We know it’s not.
Ashley and Jason began IVF in 2020 after three years of trying to conceive, with Ashley facing endometriosis and COVID-19 delays. Their fertility treatment at Care Fertility Sheffield brought hope, but also challenges – Ashley shares their story below:
Living with heavy periods and silent pain
I'd had bad periods for pretty much all my life, really, starting when I was 15 and really heavy. I suppose because it’s not spoken about, I never really told anyone about the extent of the pain or bleeding, and I think I just expected that this was normal, and that everyone was the same.
But in December 2014, Jason and I had just moved into our first home together, and the back pain started, and it was quite bad back pain, the type of sciatic pain ran down both legs to a point where I felt, looking back now, I was pretty much bed bound, I couldn't do anything. My periods were so heavy and they were very painful.
I went to the GP, and they referred me in for physiotherapy. At the physio, every time she touched me, she could feel that my spine and my back were tensing up, so she said that she didn't think that this was back issue. So, I asked for a referral to gynaecology because of the heavy and painful periods.
The gynaecologist was at the general district hospital, and by October I was having my first laparoscopy to investigate the issues I was having. Just as I went into theatre, the surgeon said to me that ‘this is all psychosomatic, you don't get pain in your back when it's period pain, this is not endometriosis’. It was frustrating, because he was the gynaecology consultant, and I was feeling not listened to.
I was thinking if this isn’t endometriosis then what is it? Because my life had already been taken over pain, so what could it be?
Finally being diagnosed with endometriosis
When I came out of theatre, I was told that they had found endometriosis,but they hadn’t been able to remove it fully as it was on my bladder. So off I went, and there really wasn’t any other treatment available to me, but now I found that I was getting up several times in the night to use the toilet. I had a lot of bladder pain when my bladder was full, and the bleeding stull carried on.
I would say that I ended up in more pain after the surgery, and I remember saying to someone that something wasn’t right – not that the surgeon had done anything wrong, but there had to be something more going on.
I went back to gynaecology, and I was put back under investigation, but now for the bladder issues too. I went on a medication that made me hold my bladder a bit longer, which did help and I had pelvic physio. The pelvic physio was good,she did a lot of movement on my stomach, and I think that that helped to release a lot of the adhesions, which lead to less pain.
I also went onto a medication called Zoladex, this puts you into a chemical menopause. I was on it for seven months, and I experienced all the menopause symptoms – brain fog, sweating, especially night sweats. I also had bad heart palpitations, I struggled quite badly on that medication with heart palpitations and panic attacks, which then led onto me needing to have antidepressants as well because of how bad the anxiety was.
Eventually, I went to a specialist centre to meet with another surgeon. In the UK, we have BSGE specialist centres. So, I ended up going to the one in Sheffield. The surgeon really listened, I took four pages of information about how I was feeling, what symptoms I had, and he said, ‘we really need to sort you out’.
I went into surgery with him, which was incredible. He removed pretty much all of it, and I had a pain free life! This was in 2017, and I was doing my nursing degree, and I remember we did it during the Christmas holidays, so I had a couple of weeks off and I just got to live a completely normal life, with no pain.
Wanting a family but nothing happening
But we wanted a family. We had been trying and I’d been doing ovulation testing every month, and I had always ovulated. My cycles were up to 30 days. I knew dead on when I'd ovulate. We had sex every other day, as the GP had told us.
We'd tried all the different things, all the myths and nothing ever worked. I look back now and I remember thinking to myself that I never really thought that I was going to be a mum. I remember asking on IVF pages and support groups whether anyone else felt like this, which sounds strange, and I always say it to people now, but I really just never felt like I was going to be a mum. It was lonely, and it felt very strange.
After the surgery in late 2017, we started trying in 2018 for a family again. But it just wasn’t happening. We got married in 2019 and the day before my wedding, I realised that my period was a week late, and I thought my goodness, we’re pregnant, how am I going to hide it from people? And I was excited. But the day of the wedding, my period came, and it was horrendous.
On their wedding day, Ashley and Jason dreamed about the family they’d build together. They didn’t know then how much strength that dream would ask of them.
Delays, COVID, and turning to fertility treatment
In 2020, we decided that we'd been trying for a long enough time. We went to the GP, and he referred us to an NHS clinic. But in March 2020, the COVID-19 pandemic hit, and all the clinics shut. So, we were now in a situation where we really wanted a family, and I wasn’t getting any younger, we didn’t know what my AMH was, how my follicles were.
It wasn’t helped by the fact that I am a neonatal nurse, so I am around babies all the time. Luckily, I had heard that Care Fertility were opening their clinics back up so I got in touch with our GP and asked if we could be referred to the clinic in Sheffield.
Starting IVF and learning the hard way
Within a month of seeing them in the July, I'd had blood tests and by August, I'd started my treatment. I found the process stressful; we had lots of ups and downs emotionally and physically. We experienced a lot of desperation and hope.
I feel we always thought IVF would work the first time around – after all, why wouldn’t it? I think with the injections as well, even though I am a nurse and I inject other people all the time, I don't inject myself. I've figured out with, through IVF that I am a control freak. I really, really struggle with Jason doing anything. So, I wanted to inject myself even though I didn't really want to inject myself.
Treatment meant daily injections and strict medication timings. Ashley decided to administer her own injections, wanting to feel in control of each step.
I'd read a lot about endometriosis and IVF and that success is more reliant on whether your fallopian tubes are damaged or not. I'd had the test where they checked my tubes and my tubes were clear. But I'd read that the damage with the endometriosis is probably killing off the egg before it could get anywhere. We retrieved nine or 10 eggs that round, which was amazing.
Jason's sperm count was a little bit lower than what they'd wanted. He had quite a few sperm tests and in the end it was fine. Whether it was stress related, we don’t know. We were strict, he wasn't allowed in a hot bath or a hot tub. I had to get acupuncture every week.
We spent a fortune on anything and everything that was supposed to help, even castor oil packs. I started drinking only hot, hot water. I never had a cold drink because I’d read that endometriosis had to be warm, and my feet were always cold, so I always had socks on. I never did the McDonald's fries, though, after transfer. I didn't agree with that as such. We'd go out for a meal after and sort of celebrate.
But I... don't know. I just went into it a bit naive, to be honest. And I think that was probably my downfall, because I think I'd got my hopes up.
OHSS, hospital, and a frozen transfer
Transfer day came around I was feeling unwell. My stomach was quite blown up, and I was in a lot of pain and feeling nauseous. The clinic scanned me and said that there was too much fluid in my abdomen, and it could be possible that I had been overstimulated. I ended up having to go to A&E that night, and the transfer was cancelled. I ended up on a ward, and because it was covid time Jason wasn’t allowed in with me, which was frustrating.
I was telling the nurses that I was in a lot of pain, and that I needed more pain relief, and they kept saying to me that I couldn’t have pain relief because I was pregnant. I kept having to explain that I am not pregnant, because the transfer didn’t go ahead.
I had another scan, and my ovaries were close to rupture. At this point, I was so scared that I was going to lose my ovaries but kept thinking to myself that we have four embryos frozen, and that obviously the first one was going to work.
I had a month off the IVF to recover, and then by the October I had my first transfer as a frozen transfer, which looking at it now,I think it was probably the best. I think I found egg collection really painful, and I think my body just needed that little bit of time really to just settle down.
A positive test
I had the transfer and went home thinking that I am pregnant and that I am going to have a baby out of this – as you do.
I got to nine days and I took a test. There were two pink lines! It was just this moment of ‘oh my goodness, I am pregnant’. It felt so surreal, and we were so happy.
But then five days after that, when I should have tested, I started bleeding. I was on an epidural study day, and I didn’t tell anyone what was going on, even though I know the people in that room would have understood and tried to help. I stayed for the entire day, and when I got home, I just got into bed and sobbed.
I rang the clinic and they said if I am bleeding let’s just see what happens over the next few days, just carry on with the medication. The next day I rang them and said that I just needed to know and that I don’t know what todo. So, they did my bloods, and they came back at 7,000 for HCG, which is quite high. I went back three days later, and it had dropped to 700 – it was a chemical pregnancy. That hurt, it kind of felt like it had taken away that my body had got pregnant, something had worked.
An ectopic pregnancy and six months on hold
The nurse said we’d do another test in two weeks and we could then discuss what our next steps would be. The clinic were really good, they offered me counselling but at the time I was like thinking to myself, no it’s fine, I don’t need it.
I did the test two weeks later and the lines came back even stronger, and I was like what is happening? I suppose it was a little bit of hope too, like 'oh maybe I am pregnant, should I start the pessaries again?'.
The clinic asked me to go in for a scan and a blood test. I went in, they did the blood test, and Emma, the nurse, she was really, really lovely. She said I think we'll just do this test and this blood test and then we'll see. And I got the pregnancy test out and I said, no, this is the test. And she was like, 'oh', and you could see on her face. She got me straight in for a scan and the lady in the scan room saw a shadow on my left ovary.
I went home after that whilst they spoke with the doctors and decided what to do. When I got home and researched it and I was like, my gosh, is the pregnancy in my ovary? Emma rang me later that day and told me she had made me an appointment at the early pregnancy unit, and that they weren't sure what was happening.
At the early pregnancy unit, they told me it was an ectopic pregnancy. I’d never really looked into the risk of ectopic pregnancies with endometriosis – but looking at it after it was clear it was quite a high risk. For all of Christmas, up until the beginning of January, I had to go back to the unit for a blood test every other day – the HCG was declining but not at a rapid enough pace. They decided that I’d either need to have my fallopian tube removed or have methotrexate to remove the pregnancy.
It was really hard because I didn't want the tube removing just in case the tube was in working order. But I remember the surgeon coming to me, and I'd never met this surgeon before, and he just said ‘look, your tubes are broken anyway because of the endometriosis, so you might as well just have it out’. But I really struggle with being put under general anaesthetic, so I opted for the methotrexate. Everything was still under covid precautions, so Jason wasn’t allowed in, and I was alone for nine hours.
The doctor clearly didn’t understand what it took to conceive with IVF, and he asked me if I had anymore embryo’s and when I told him yes, he said ‘Well, you can just try again then’. I’ll always remember that because I just thought to myself, 'yeah because it’s so easy to just keep trying again and again'.
Because of the methotrexate, I then had to have six months off because it can affect any potential foetus.
Searching for answers and further testing
In April 2021, we went back to the clinic and were looking at starting again. But I just knew something wasn’t right. I asked for extra testing and asked if I could have clotting testing, lupus anticoagulant testing, and autoimmune testing. It came back that I did have a few clotting issues, that would require me to have aspirin and blood thinners. The lupus anticoagulant came back positive, but you have to be retested again, and when I had that done it came back negative.
Because of this we decided to go without blood thinners for our next cycle, I did use steroids and aspirin though. I wanted to do more of a basic cycle, as I had gotten pregnant. At the same time, Oxford were doing a study for NK cell testing, so I became a participant. I came back as negative for NK cell.
I think because I am a nurse, I’d do so much research, I’d probably backed myself into a bit of a medical corner. We went for our second transfer, but five days after sort of test day again, I started bleeding. I went into a depression at this point, and I just felt that something really wasn’t right. I wanted answers, and I didn’t want to just keep ‘wasting’ embryo’s because of how painful the retrieval had been for me, I was desperate to avoid another one.
More transfers and more heartbreak
After that second transfer, and the miscarriage, I was like, right, we'll try again in the October. We had a little bit of time off, had a summer holiday and recouped. And I think the thing that I find with people doing IVF, they want to do over and over and over as many transfers as they can. I think that would have been really unhealthy for me, for my mindset.
I'd had some counselling at this point and that did help. But I think I was just really determined that I wanted a baby. And I think as soon as you have had the miscarriages, you sort of want to replace that pregnancy, which sounds really strange. It's like a real desire and I'd do anything. I'd stand on anybody to get to where I wanted to be in this situation.
October came round and we went with another transfer. And again, I got pregnant. I asked for extra progesterone, so I was injecting Lubion, doing triple the number of pessaries. But again, I had another miscarriage, at around seven weeks.
By this point, we’d never even got to a scan for a live pregnancy. We just had the scan pictures of the actual embryos. You walk out of the clinic with the scan picture of the embryo like that’s your baby, and it’s odd how much you cherish that picture.
These are Ashley and Jason’s embryos. Before any positive test or scan, these images were the closest they had come to seeing a baby of their own.
Again, it was another Christmas without a baby or even being pregnant. We were just living, and it was like this for two or three years, just repetitive, going through the motions.
The final embryo and a shift in mindset
In the January I decided we'll just throw everything at it, the steroids, the blood thinners, the aspirin, everything. This was the last embryo, our final chance, and it didn’t work.
I spoke with the clinic, and I remember telling her on the test day that I wasn’t pregnant, and she was really sympathetic, but I actually was like this is probably the better of the situations because I haven’t lost a pregnancy this time. It must have been the embryo that wasn’t right, or the environment wasn’t right.
By this point, we’d used the last of our NHS cycle and it was now down to how much money we were willing to throw at it.
These negative tests followed a transfer using their last available embryo. Although it was heartbreaking, Ashley later reflected that this loss felt different — it wasn’t a miscarriage, and that brought a small sense of relief during an incredibly difficult time.
Choosing to live again and trying one more time
At this point, my mindset began to change and I just said to Jason that we’ve actually got a really lovely life together and I just felt like we could have anything we wanted in life, the only thing we couldn’t have was a family together. We decided to live a little and booked a holiday to Mauritius, a Zika-free country, just in case we conceived naturally. Typically, my period came and the endometriosis ruined it just like it always did.
While we were away, we talked about trying IVF again, and he said if that’s what you want to do. He was always very much happy with whatever I wanted to do, and it was always dictated by my feelings. I feel like he was always overshadowed by me and my emotions, and I am probably the more emotional one in the relationship.
I rang the clinic from Mauritius and said, we would like to try another cycle. They told us to look into the multi-cycle, and I did, I realised I would never have paid for a single cycle, just because of everything we’d been through at this point. I asked to have the lupus tested for again, and it came back positive. This meant that I needed the blood thinners this time, or I would lose the pregnancy.
Another cycle, new protocol, and renewed hope
In April, we started again. I didn’t stimulate as well this time, but the egg collection wasn't as painful either. I don't know whether the emotions had sort of been taken out of the whole IVF process for me. I knew that I only wanted to do one more transfer, I was downbeat and I didn’t have it in me to keep having these transfers. I felt low because I wasn’t sure how many embryos we were going to get this time.
We ended up getting nine eggs, and in theatre they kept asking me what the pain level was and I was refusing to tell them until they told me how many eggs I had, because I wanted to keep going and get as many as I possibly could. I was really that desperate for a family.
We ended up with five embryos’, which was more than the first round, and I know they always say quality over quantity, and it is true. It got to transfer day, and I was really well, and in comparison, it was unreal and it just, it felt really positive.
Don't get me wrong, I was still really low, but I was in a better mindset. We'd been on a lovely holiday. We realised that we had a lovely life, and I stopped planning my life around ‘what if I was pregnant’ and saying no to things, like weddings in six months’ time ‘just in case’. I just started saying yes to things. I always say to people who are going through IVF now, that you just need to carry on with your life. You can’t just stop your life based on a ‘what if’.
Bleeding again and fearing the worst
I got a positive pregnancy test, which was amazing. What wasn't amazing was that I started bleeding again. I spoke to the clinic, and I told them that I was in agony. It was much more pain that I’d had with previous miscarriages, so I wanted, and needed, to know what to do next. They got me in straight away and out me on extra Lubion. They did my bloods and they came back quite low and I felt a bit deflated and thinking to myself why have I put myself through this again?
I went back two days later and they'd risen but enough. It was looking like it was bordering on being another ectopic pregnancy. I was put on bed rest, and this ended up lasting six weeks. Every time I would go to the bathroom there would be fresh blood, and I’d be looking at it and thinking that the pregnancy had gone. Every other day I had blood tests and they kept coming back a little bit higher, which showed that it wasn't ectopic. I was booked in for a scan at six weeks, and we’d never made it to this stage before.
One of their embryos from Care Fertility Sheffield, pictured next to a handful of pregnancy tests — only a small number compared to how many Ashley had taken throughout their journey.
The first scan and an uncertain beginning
We went to scan and it was really nerve-wracking, were they actually going to find anything in there because I am still bleeding. At this point, it was painful, and it felt like this was the most painful of all the miscarriages. I really wanted to put a hot water bottle on my stomach to help soothe the pain, but I couldn’t because what if there was a baby in there and I potentially harmed it?
During the scan, Emma turned the screen around and she said 'I am happy to tell you that there is a baby in there'. We could see that there was no heartbeat, and we asked if this was normal, and she said it can be.
We had a wedding the next day, and because of the steroids I was so puffed up, it was obvious that there was something going on. When I went back to work and I took my mask off, my colleagues didn’t recognise me. One of them even patted my belly and said congratulations because I was that puffed up, and I had to say ‘oh no, I’m just fat’ because I didn’t want to tell anyone that I was pregnant, just in case.
Two heartbeats
At seven weeks and four days, we went back to the clinic for another scan, and we were both holding hands, in a sort of desperation, whilst I laid on the bed. The lady doing the scan said ‘I have something to tell you’ and I instantly thought, oh it’s gone, isn’t it? But she turned the monitor around and there were TWO little heartbeats. And I suppose, this was a really weird reaction, but we just laughed. I guess almost in disbelief. We had wanted a family, we had finally gotten pregnant, and it wasn’t with just one baby, it was two. We were so lucky, the embryo had split.
That first heartbeat appointment at Care Fertility Sheffield turned into double the joy — the embryo had split, and they were suddenly preparing for twins.
A difficult pregnancy after everything
The pregnancy wasn't an easy pregnancy at all. I had bad hyperemesis, and it was clear quite quickly that I was pregnant. By nine weeks I was in maternity clothes, I was very big. People knew very, very early on and that sort of made it harder because I was so guarded, I didn’t want people to know, because what if something went wrong and I lost the twins? But I knew that I had to stop thinking the worst, and just be happy, otherwise I’d regret it. We were so happy, we were constantly holding my tummy, but I was very unwell.
I ended upon crutches with SPD, it was so painful, the weight of them both and my hips. I also got gestational diabetes. So, it felt like everything, literally everything, was just against me. We didn't buy anything until around 26 weeks pregnant. I just didn't believe that we were ever going to have these babies in our arms, ever.
It became clear quite quickly that Ashley was pregnant. After everything they’d been through, the news felt both exciting and hard to believe.
During the pregnancy, I was always aware of which twin was which, and Amelia had had reduced movement on my right-hand side. I’d been up from 2am until 7am just trying to get her to move, but nothing was happening, so we went to the hospital. When we got there, they had said I was in labour, which was funny because for two weeks prior I had been complaining of back pain and my mum had said to me that I was going to go into labour, and I said no I’m not, it’s just Braxton hicks.
They kept me in, and it was estimated that I’d have them within seven days. Four days later, as I was getting ready to be discharged, my waters broke. I was 33 weeks plus five at this point, but as a neonatal nurse, I knew that the babies would likely be fine.
Delivering our daughters
I was asked how I wanted to deliver, and I chose a c-section. During my contractions, the pain had been too much and I knew I wouldn’t be able to deliver them naturally. It felt like the period pain, and the PTSD was just too much. It became clear to me that when people would say that endometriosis pain feels like labour, they were right. That was the level of pain I had been going through for years.
During the C-section I had low blood sugars and required a blood transfusion. My baby girls were born weighing 3lb 8oz and 3lb 9oz. They were taken straight to the neonatal ward, where they stayed for 12 days, but they were finally here. We finally had the family we’d tried so hard for.
When their identical twins arrived early, Ashley stepped into the neonatal unit not just as a mum, but as a neonatal nurse. She understood the monitors, the wires, the careful watching — and she knew they would be okay. More than anything, she was just grateful they were finally here.
Life after IVF and living with endometriosis
My body endured a lot during pregnancy, and for that reason I would never advocate transferring more than one embryo. I'd had the surgery to remove all the endometriosis, but now I was at a point where I'd been stimulated a lot for the IVF. I'd had a lot of fertility drugs, a lot of hormones. I'm in a situation now where the endometriosis is a lot worse. I've just recently had an MRI, and it is now on my bowel, and my bladder, and it's pulling everything in different directions.
It’s frustrating because a lot of people say, ‘oh, when you've had a baby, the endometriosis goes away’. That's not the case, and I am in a worse situation now. I have tried the Ryko drug rather than the Zoladex, but it gave me really bad panic attacks and anxiety again. I had to stop that just because I just couldn't cope with the heart palpitations, and within an intensive care environment where I worked, I just couldn't cope. Also with the girls, I just didn't have the patience, and it just wasn't working for us as a family.
I had the coil put in very soon after having the girls. That has worked wonders, but it's just the weight gain and the other side effects that come with the coil. There’s not really a ‘nice’ hormonal treatment out there currently, and it’s not as if I can come off contraception all together, because the periods and the pain would return, and I’d most likely be bedbound. That just isn’t feasible when you have to little girls to look after! I wouldn’t be able to give them the life that I want to give them.
Our little family
Being a twin parent really does push you to your limits. I have very little time for myself, but I do have twice the moments, twice the love, and of course double trouble. None of this would have been possible without Care Fertility Sheffield, with Dr Georgios Petsas, made this happen and I cannot thank them enough for giving us our little family.
After treatment at Care Fertility Sheffield and an identical twin pregnancy, Ashley and Jason’s babies were born prematurely and cared for in neonatal. Today, their twins are thriving toddlers.
Why we donated our embryos
For me, the long down-regulation IVF cycle worked better than the short one. It felt calmer on my body, almost like switching the endometriosis off for a while and creating a better environment for implantation.
But IVF takes a huge toll. The injections, the constant monitoring, the emotional strain. With our babies here, I knew I couldn’t go through it all again. Sometimes you have to stop while you’re ahead.
So we chose to donate our remaining embryos for miscarriage research. After three losses, I knew what it felt like to get pregnant but not stay pregnant. If our embryos can help other women facing that heartbreak, then that means everything to us.
Thinking about your own fertility journey?
Do you have, or think you may have, endometriosis and are finding it hard to conceive? You’re not alone, and you don’t have to work this out by yourself. A fertility assessment can be a helpful first step, giving you clear answers and a chance to talk things through with an expert who understands the bigger picture. When you’re ready, our team is here to listen, support you, and help you explore your options in a way that feels right for you.
