My Story by Hayley

I want to share my feelings about infertility, because I want you to understand my struggle

I know that understanding infertility is difficult, there are times when I don’t understand it myself.  

Me and my hubby got married in 2012 and decided to try for a family. After a year of trying we went to visit the doctor to voice our concerns as I had no periods. We went for all the relevant tests and scans and I was prescribed Clomid to take for six months to try and kick-start things, but to no positive outcome.

The side effects of Clomid for me were awful, I felt anxious, sick and like my head was going to explode and like a mad woman

We were told IVF would be our only option so was referred to start our IVF journey.  After a consultation, we had hundreds of forms to complete and sign, questions included “what happened to our embryos if one of us died” things that you would never really think about, before waiting for our drug appointment in Feb 2015.

We were funded for 3 egg collection cycles on the NHS

I collected my huge bag of medication and was quickly shown how to administer an injection.  I was turning from nail tech to nurse Overnight. At that time I had comments like “I how can u inject yourself?”  My reply was ‘I had no option’. My Hubby was always scared of needles so wouldn’t even watch me do it. I was alone, but had to face up to it and be brave. 

I took tablets first to bring on my period, had a scan where they found a cyst so had to wait til next month to try again and hope the cyst goes.  
Took the tablets again, scan shown cyst had gone so then started daily injections to make follicles on my ovaries grow. The first needle was a Saturday night and I’ll never forget it, panicking incase I did it wrong, it stung and bled a bit but I did it.  Scans were regular to check how many follicles were being produced, then our egg collection appointment was booked as everything looked fine.

Then the day arrived for egg collection –9th April 2015, it was an early start, no perfume, deodorant, or make up allowed for both of us, we travelled to liverpool, nervous & feeling sick!  We barely spoke only to say, “u ok?” The answer being NO from both of us. We were shown to our private room and gowned up. He went off to do his bit before the nurse came to collect me.

19 eggs were collected whilst I slept and mike sat patiently in the room for me.  We were sent home to then wait nervously for our call tomorrow, they were kept overnight to fertilise.  I received the call, she told me –an amazing 14 had made it, they then had to grow these embryos for 5 days into Blastocysts.

Then the waiting continued….  

(Thinking our possible babies were left for 5 days in a dish to develop we had no update and didn’t know the outcome) so 5 days later received another call to say embryo transfer would take place today. 4 of our embryos had made it!

We returned to the hospital on 14th April  to have 1 of the embryos transferred. Not knowing what to expect was difficult, we were both gounded up with hair nets the lot and taken into the clinical room,  the nurse confirmed our names and date of births about 5 times to confirm who we were, also by the embryologist. We were shown our embryo on the TV screen which was in the dish and labelled to confirm it was ours. The nurse them inserted the embryo through a catheter her words were “best of luck” something that you hear said on the lottery when the button is pressed, at that point I just cried.  
We were lucky to get 4 out of the 14 to blastocyst stage so 3 were safely placed in the freezer.  

The next 11 days were the longest of our lives, waiting to see if the embryo had taken.  Every time I felt a flutter, went the toilet or eat something, all I could think about was the embryo growing and attaching. Thoughts then started like, how would we announce our good news, when would the baby be due, would be New Year’s Eve and would this embryo be our baby girl or boy.  

So on Sat 25th April 2015. we woke up about 5am and tested, feeling sick and anxious

The result was negative. It was heartbreaking. Having to make the phone call to the hospital to say it hadn’t worked was the hardest call I’ve made. I just felt like a failure.  

One of the hardest parts of this journey is returning to square one – after everything we’ve been through, we are no more pregnant than we have ever been. I have no concept of what it feels like to find out you’re pregnant. I can’t imagine it, I can’t picture it, it’s hard to believe it will ever happen to me.  And yet the disappointment never gets any easier. It hurts so much.

My husband deserves so much to have a child that’s just like him. And I can’t give him one. The guilt sets in. Then everyone around us seem to have babies, or when your friends or family members announce that they are about to become parents. Although we’re over the moon for them, of course it’s natural to have that jealousy and bitterness that makes us wonder why we can’t have that, what’s wrong with us? what are we doing wrong? Why are we being punished?

After a few months of grieving, in September 2015 we began the steps for our frozen embryo to be transferred

I took tablets, and daily injections again but this time to close everything down, called “down regulating”, basically puts my body through the menopause- great side effects -NOT.   Then tablets to build up the lining of my womb, which didn’t work in my case, the max size of my lining was only 4.5mm so after 6 weeks of medication the cycle was cancelled. The ideal thickness is 6-8mm for an embryo to implant successfully.  This was devastating, emotional and draining. what a waste of time. I thought to myself I can’t do this again, why should I put my body and mind through all that headache, but I had no option but to try again if I wanted to achieve my dream. I kept trying to tell myself this. 

In December 2015 I had an endo scratch which is to help thicken womb lining and help implantation

Not very nice treatment, very painful and I was awake. It is what it is called “the consultant scratches the endometrium with a metal rod”.  

Then I started with more drugs to prepare my body for a frozen embryo to be transferred.  I took clomid and progynova this time, so no injections and After several scans my lining was at 6.6mm so suitable for the transfer.  (6mm is the minimum)

On Sunday 24th January 2016, I received a call from the embryologist to confirm to defrost/thaw one of our precious embryos.  

We were given a time to head over to the hospital and told to keep my phone on incase anything happened to our embryo, that drive to the hospital  was the most nerve wracking. I sat looking at my phone the whole way, We arrived and everything was fine, our embryo had survived the thaw. We were another step closer.  There are so many steps In this process and hurdles to get over. It’s not just as simple as celebrities and some people make out or think.

Our embryo was transferred and I was sent home again for the dreaded 2 week wait with instructions of what to do and not to do as if I was then pregnant.  PUPO, so “pregnant until proven otherwise”. You would think that was so exciting, but it felt just scary and I was even more nervous. Then the next 11 days dragged again waiting for that test day.  The morning to test arrived and those words we had seen before “not pregnant”. That was on 4th Feb 2016.

I don’t actually know how I would react to seeing the word pregnant,  (something that a lot of people take for granted). I think the whole street would hear us celebrate

At that time I thought I can’t do this again….  each time it got harder but easier In the same way.  

We booked a last minute trip to New York in March. Life needed to go on!   People would say, “go on holiday and enjoy yourself, then it will happen”. What people don’t realise is the consultant told us that it would not happen naturally as I don’t ovulate.  My LH level is 33 and normal is 5.

This whole process was making us unhappy, miserable and taking over our lives

To the outside world, our friends and family they knew what were going through to some respect,  but not to the full extent. It’s was totally draining and affecting our marriage.

The best quote I have read was “from the outside looking in, it’s hard to understand,  from the inside looking out it’s hard to explain”. Unless you have been in this situation it’s so hard to understand.  Never did I imagine growing up, that I would need all this help to become a Mum which comes so naturally to most people.  

In March 2016 we had an appointment with our consultant and he suggested I should have an NK test to see if my natural killer cell levels are normal.  

For the next 4 months I took Clomid again with Progynova to make me ovulate and thicken my lining as that was required for the NK test to be done. So each month I would go in for a scan to be told “not this month” my lining was too thin. 5.1mm, 4.2mm, 3.5mm and 3.3mm.

After not getting my lining thick enough each month, in July 2016 we decided against NK test and decided to have another embryo transfer

The hospital were reluctant as they wanted me to have the test, but the drugs were not working to increase my lining so I couldn’t.

This time I was going to have Intralipids, which is a drip of egg yolk and soya, given 5 days before the embryo transfer to help the immune system

Then if a positive test is gained a further drip, and then at 4, 8 and 12 wks pregnant. After clomid and an increased dose of 12mg of Progynova, 6 tablets a day, my lining was at 8.4mm so on 1st August we paid £295 for the Intralipids drip which took 3 hours ready for our transfer on 7th August 2016.  

As normal the embryologist called in the morning to get our consent to defrost/thaw. But she advised us to have both our remaining embryos transferred due to the quality and it being our third transfer. It was a hard decision to make, but we went with her suggestion. Both our remaining embryos were transferred and then we waited those long 11 days until test day.  This time our chance of twins was greater, which would have been scary but we  would have been happy either way to get a positive test. The test day arrived 18th August 2016, and again those two words. Heartbroken, devastated, sick. It hadn’t worked again. Why????

Time out required again

It was hard with people asking what you going do next?  When you starting again? It’s not that simple, it is emotionally draining and takes over your life.  The whole wanting a family for us has taken over our lives, you try and we do everything right. Following all the guidelines, eat and drink things to help, plus organising our lives and lifestyle around it, but you keep coming up empty. It just feels like blow after blow.

People would say to me, “are you taking time off work?” I wanted to carry on with work as that was normal  and it kept my mind occupied. I had enough time off due to appointments and scans etc, so I carried on with work as normal as possible. I always hoped that there would come a time when I would need time off anyway for midwife appointments etc.  

There were days I would wake up and not want to, but then I gave myself a good talking to and said “come on, get yourself together”

We had no embryos left from our first cycle, so it was time to start cycle two. We decided to get Xmas out of the way and start a fresh in January 2017.  It used to be a time of year I loved….but now hate. It is all about children and not having any just makes us feel left out and what’s the point.

Friends and family deliver presents to each other for their children, take them to see Santa, go to pantomimes etc, and I just feel jealous and left out.  I hope one day I can be part of all that but for now, I just need to deal with it.

We had to re-sign all consent forms, and have bloods tests again, so started my tablets and injections in March 2017.  So the injections started, which then takes over my life again, they had to be taken at the same time each day so would always be planning ahead. I could never just pop out unplanned after work as I had to get home to do my injection. If it was something planned I would take it out with me, in the toilets doing my injection.  So nerve wracking, and always thinking what if I lost my bag or got searched!!

On 12th April 2017 it was my second egg collection, we headed over again. He was sent to do his sample and I was put to sleep and my eggs were collected.  Coming round I was drowsy, but trying to act normal so I could hear the nurse telling me how many. She said 6 eggs were collected, we were gutted as we got so many more last time.  Again I cried.
I was on a lower dose of medication as from my first cycle was at risk of OHSS.  

The nurse made it clear it wasn’t about quantity but the quality

Waiting for the phone call the following day was nerve wracking as ever,  we thought maybe half would fertilise. She rang me and said “good news” 5 had fertilised.  We were amazed!!

Due to me being unwell and some studies shows that frozen transfers can be more successful, due to giving my body time to go back to normal, we decided to freeze the embryos that made it to Day 5 blastocysts. We got a call on 18th April to be told two had made it to day 5, blastocysts and graded at 3BB & 3BC.

On 22nd June – we had a consultantation to discuss what frozen protocol we would be having,  he advised medication and if my lining didn’t reach the thickness then he would try me on Viagra to help increase it.  

Few months break again and time to celebrate turning 30.  I dragged it out more than I ever expected. Barcelona and Vegas, My birthday party and then surprise trip to Rome, also a hen do in Benidorm, it was a very busy few months.  

But all I could think about was starting my drugs again in August

That was never my plans for my 30th, although I would have always had a party, my plan was to be a Mum to 1 or 2 children by this age,  instead I was explaining to people that our next cycle would start after my 30th celebrations.

On 9th August 2017 we received some devastating  news that the ccg had cut funding and we were not longed granted our 3rd cycle!! If these 2 embryos don’t result in a positive, we would then have to consider paying for treatment, at around £8000 a cycle it’s not money you just have lying around so would cause us financial issues as well as more of an emotional strain on our relationship.

Our drug appointment was booked for Friday 25th August – our 5th wedding anniversary (Never would we have thought that we would be in this situation 5 years on).

On 27th Aug I started my daily injections to put my body through the menopause and went for my Base Scan on 14th September

Everything looked fine so I started 12mg of progynova 6 tablets a day as well as the daily injections to then thicken up my lining.  Amongst all this going on I decided to write a complaints letter to the ccg, and received a letter back saying we would get our funding back 😀.  It had basically been misinterpreted and it was for new patients that the cuts were made for, that put our mind at rest a bit. It was a back up plan but hoping these two embryos worked.  

Lining scan was on Friday 29th September, my lining needed to be over 8mm to be in line with getting a date for transfer, but the scan shown my lining was Only 5.6mm.🙁  

So from my consultant’s recommendation, I was given Viagra to take for 5 days then back for a re-scan on Tuesday, 3rd October.

I returned for another scan and my lining had gone slightly thinner

So transfer could not go ahead.  The Dr spoke about our cycle being cancelled, heartbreaking wasn’t the word, after all those weeks of using my stomach as a pin cushion, popping pills and feeling crappy.  I begged there was something we could try. He then suggested planning for transfer next week, which meant me starting pessaries twice a day and stopping the injections. I requested for a scan before our embryo was thawed, so Another scan booked for Monday 9th Oct at 9am,  if my lining is at 5.5, he would consider letting us have the transfer even though not to the ideal thickness for implantation. We returned on Monday morning, nervous and anxious as my lining might have got thinner but hoped it had got thicker more like 8mm.

The scan shown it was only measuring 2mm, so a lot thinner, our cycle was over

We came home and spent the day in bed, it was so crap, after all that time, pain, sickness, was a waste of time again.  

Our follow up appointment was booked for 2nd November with Dr to see what we could try next.  He seemed vague and said the Viagra should have helped thicken my lining, what might have happened is the dose of progynova I was started on was actually too high and it should have been gradually upped. No other miracle drug would help my lining, he basically asked us what we thought next. I suggested having a scan when I next bled to see what my lining measures with no medication, and if a possible egg then could be given an injection to make me ovulate.  

The waiting commenced again. Leaving the hospital not feeling any better or positive, felt like it was a waste of time and maybe a second opinion is needed.

We went back to see consultant in December and he agreed to let us have a fake egg collection cycle, but without the egg collection, so just a low dose of merinol to help thicken my lining then hcg and transfer.  So again it was time to get Xmas out the was and start with January 2018 bleed.

I had my drug appointment call on Friday, 5th January to confirm when I would start meds then it was a case of waiting for my bleed.  

I was then to take 2 amps of Merinol on Day 2,4,6,8 and 10 to stimulate my ovaries, to help thicken my lining.  Scan on day 8 shown – lining was only 4.5mm and I had a few follicles at 10 & 12 mm.  

So I was back again on Day 12 where my lining  was still only 4.5mm but lots of follicles now 14-17mm    

Transfer should have now been booked but because my lining was still too thin it was over again,  although Dr had agreed to give one more shot of Merinol on Day 12, plus cetritide to hold off ovulation and Rescan on day 14.   So not expecting anything any better I went along for another scan and my lining was 7.5mm😁. I cried happy tears that it was all going to plan.    I was prescribed a double dose of hcg to do tonight and transfer scheduled for next Wednesday 31st Jan.
On Fri 26th Jan-  I Started with Bad stomach pains,  but as always I just get on with things,  and started My Lubion injections on Saturday night.  But by the
Sunday the pain was worse and I was so bloated and feeling pressure like I was going to wee myself.  So went to out of hours. Dr said could be OHSS but best to see Liverpool tomorrow for a scan.

Monday 29th Jan, I called Liverpool and they booked me an urgent scan

I have never felt pain like it and cried as the nurse scanned me. My ovaries stuck together and I had lots of excess fluid –  cycle cancelled as over stimulated.

They tested my blood to check liver function etc and was sent home to take pain killers and wait for my ovaries to calm down.  How had we got 2 days from transfer day and now this, my lining was great thickness but I had over-stimulated.

I received a phone call on Tuesday to say my bloods were high so needed to be rescanned and checked Thursday,  so returned again for further scan, which showed my ovaries were calming down slowly and the fluid had reduced.

Follow up booked for 4th April so Our journey continues….

 

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