IVF baby joy after endometriosis ‘agony’

Pill masked the symptoms of endometriosis

Carlene was put on the pill as a teenager to ease painful periods and it masked the symptoms of endometriosis, a condition where tissue, similar to that of the lining of the womb, grows in other parts of the body such as around the ovaries and fallopian tubes.

“When I came off the pill to try to get pregnant the painful periods returned and slowly got worse and worse,” she says. “The pain would be so bad sometimes that I almost couldn’t function. It was terrible; I would wake up in the night, throwing up with the pain, my heart would be racing and I would be having hot sweats. I knew something was wrong.

“I was told that I would have to go back on the pill to ease the pain, but me and my husband Lewis really wanted a baby, so I had four years of agony.”

The couple, who live in Suffolk, went to their GP for advice and the initial tests came back normal, so they were told to try for longer before they were referred to hospital.

I would need to have a hydrosalpinx removed before fertility treatment

CS236 hydrosalpinx was removed before successful IVF“I had an internal scan and was referred to a surgeon for an exploratory laparoscopy, which identified that I had a hydrosalpinx (fluid) on my left fallopian tube as well as endometriosis. The tube needed to be removed, and I would need fertility treatment, it was like starting again.

“I was referred for another laparoscopy which revealed that the damage caused by the endometriosis was so bad that it had caused adhesions on my bowel and bladder and both of my ovaries were stuck to my uterus. They couldn’t remove the tube completely because I had so many adhesions from the endometriosis, so they clipped it.

“We were referred to Bourn Hall Norwich for NHS-funded IVF treatment, 12 weeks after my operation. I only had one egg collected during our first round of IVF and we had a day two transfer which was unsuccessful. I was gutted.

“For our second round it was suggested that I had egg collection under general anaesthetic to make it easier to retrieve my eggs. This would be done at the Cambridge clinic. <

“For me it was a much better experience and when I woke up, I had the number ‘8’ written on my hand and I was absolutely over the moon. Seven of the eight eggs fertilised and went to blastocyst; we couldn’t believe it, we felt like we had a chance.

I felt ecstatic on the drive home after embryo transfer because I just knew I had that hope and I hadn’t felt like that for such a long time; I went for a really long walk the next day. I didn’t quite wait the ten days to take the pregnancy test – and it was positive.

We didn’t dare believe we were pregnant

Lewis with Leo“Even when we went to the scan and saw the heartbeat we still couldn’t say that we were pregnant, it just wouldn’t come out of our mouths. We just didn’t dare believe it; we were guarding ourselves so much just in case. It had been such a long journey and we just didn’t dare say it.

“Leo arrived three weeks early, on 27 January 2022 at the James Paget, and when he arrived we absolutely loved and adored him straight away; we couldn’t believe he was ours – we still can’t sometimes!

“It is hard to put into words what IVF means to me. It has given me my life back to be honest. My whole life was consumed with worrying about whether I’d have a child and IVF was the only way I’d be able to have one.”

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Parents at last after five miscarriages in seven years

When Michael’s mum sadly died from Covid in November 2020, the couple nearly gave up; it had been her dream to see them as parents and their grief was intense.   

Marie says it was a heart-breaking time: “We had five miscarriages and Michael said ‘we can’t do this anymore’, but I knew it was what his mum would have wanted.  

“We didn’t get our hopes up as we didn’t want to feel hurt and upset again, but when the pregnancy test for our final round of IVF was positive, we felt it was a sign, mum’s gift to us.  

“The nurses at Bourn Hall IVF clinic were very supportive. ‘Although it is heart-breaking to lose someone you are very close to’, they said, ‘another door opens with a gift of life.’” They were right and the couple welcomed their son Frankie into their lives in September 2021. 

Two miscarriages after natural conception

The couple’s journey had first begun in 2016, when they became pregnant naturally, only to miscarry a few weeks later. Marie remembers that she tried not to think too much about the loss, but then she kept getting pains. The consultant at Ipswich hospital thought there was a cyst in her fallopian tube and examined her (the fallopian tube takes the egg down to the womb where it is normally fertilized).  

Devastatingly, it was found not to be a cyst but a baby. Marie had been carrying twins. The tube was removed, and the couple were deeply upset.  

Marie had a second miscarriage four months later, but this time the pain was so unbearable that when she got home from work Michael took her straight to hospital and she was rushed through to surgery. It was another ectopic pregnancy, and the second fallopian tube was removed. 

Both of my fallopian tubes had been removed 

Marie woke up after the surgery to find her family around the bed, as she had nearly died in the operating theatre through the amount of blood she had lost.   

“I was so worried that I couldn’t have children, when all we wanted more than anything in the world was a baby,” she says. “I had a long chat with the consultant who did my surgery, he explained that he had no option but to take out my fallopian tube, he was very helpful and gave us the option of referring us for IVF and said that we would get three free rounds on the NHS.   

“At the time I said to my husband ‘I cannot do this’. I had lost all faith and hope and felt I had let everyone down.  

Frankie

“But with time I felt more determined. I said to myself ‘I am going to give my husband a son or daughter and all our parents a grandchild’. So, after a couple of months, I got back in touch with the consultant and asked if we could be put on the list for IVF; we were given several options, and we chose Bourn Hall in Colchester. 

IVF gave us hope  

“We started IVF in 2018, and everyone at Bourn Hall was so lovely and helpful, and gave us so much hope and encouragement. The first round was unsuccessful, but we felt determined that IVF would work for us.   

“Then on our second round, I fell pregnant on both a fresh cycle and a frozen cycle but lost both. We couldn’t work out why. We did have a lot going on as my husband’s brother died, which was very painful and stressful, as we were the ones who found him.   

“We took a break for a little while for my body to heal and for us to have time to grieve.  

“We then started our third and final round of NHS-funded treatment. I didn’t fall pregnant on the fresh cycle but did on the subsequent frozen cycle – and lost it again.   

“The team at Bourn Hall were so helpful and gave us information to go away and think about.  

“We still had one frozen embryo in the freezer but with Covid we had to wait and put treatment on hold.  

If we don’t do this I will always wonder ‘what if’?

“My husband has been my rock and supported me all the way along our journey, but he couldn’t bear to see me hurt and upset again. But I thought, if I don’t do this, I will always wonder ‘what if?’. I just wanted that feeling of being pregnant, being able to feel a baby move inside me and most of all I wanted to be a mummy, and my husband to be a daddy.  

“So, we got a quote for the last IVF cycle and I also asked for the Embryo Glue which you do not get on the NHS, but I felt it might make a difference.”   

“We started the final round. Then we lost Michael’s mum, which was heartbreaking, as all she had wanted for us was to become parents.  

This pregnancy was successful, and Marie and Michael now have a little boy, born following an emergency C-section as Marie’s waters broke early – “Frankie really couldn’t wait any longer!”  

Frankie is a ‘gift from heaven’

Marie says: “We definitely recommend Bourn Hall as everyone is kind, lovely, caring and so, so helpful. We are both so over the moon with our little miracle baby, he really is a gift from heaven.”  

Michael adds: “It was a long, daunting journey; I felt like giving up several times, as it was very draining and very emotional for both of us. But it was very worth it. I’m not superstitious at all but I lost my mum to COVID and then our baby popped up. I’m very glad we didn’t give up, as we would not be without him; he makes us very very happy, he is such a handsome happy little baby, our little smiley, and I know my mum and brother never met him but are watching over all of us. Frankie makes us melt every time we look at him; he is so loved and he has made our little family complete.” 

Born after five miscarriages, ectopic pregnancy and major surgery

EmbryoGlue explained

EmbryoGlue is made from a substance called Hyaluronan, which is found naturally in the body and is thought to have a key role in implantation of the embryo into the womb.

During IVF an egg and sperm combine to form an embryo. The cells in the embryo multiply rapidly and when it reaches the 5-day stage it is called a blastocyst. This is when it will start to implant in the wall of the womb. Some of the embryo cells will grow to become the baby and others will form the placenta which feeds the baby. This implantation stage is really crucial to a successful pregnancy, and it is thought that many recurrent miscarriages are due to a failure at this stage.

Naturally the body increases production of a sticky substance called Hyaluronan just before implantation, and it is thought that it plays a key role in this process.

EmbryoGlue is one of the supplementary treatments, known as add-ons or adjuvants, that may be offered to you, or you might wish to consider. Hyaluronan is found it many tissues in the body and has multiple roles so there are no known risks and it may benefit patients that have experienced unsuccessful implantation.

However, there is limited scientific evidence of the benefits of embryo glue, so it is not widely recommended or available on the NHS, but it is thought it may have benefits for recurrent miscarriage.

Research from the Cochrane review* shows that embryo glue containing hyaluronan increases pregnancy and live birth rates by around 10%. There is one high quality study in this review which shows that the use of embryo glue improves pregnancy and live birth rates, other studies in the review were of moderate quality.

You can read more details on this and other supplementary treatments on our website – your IVF Consultant can also discuss these with you based on your own personal circumstances.

For the latest on the effectiveness and safety of EmbryoGlue we recommend that you visit www.hfea.gov.uk/treatments/explore-all-treatments/treatment-add-ons/ where our regulator has summarised the consensus of UK medical and scientific opinion.

*Bontekoe et al. Adherence compounds in embryo transfer media for assisted reproductive technologies (Review). The Cochrane Collaboration 2014. Published by John Wiley & Sons, Ltd.

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Shanna given choice of hysterectomy or motherhood at 21

Throughout her teenage years and twenties Shanna was blighted by excruciatingly painful periods – needing regular surgery to rectify the damage wreaked by endometriosis and ovarian cysts. “It got so bad that I was offered a hysterectomy when I was 21,” she says. “But I had always known that I wanted children and I remember saying ‘absolutely no way.’

It was a hard decision because I was miserable and constantly in pain but I wanted to be a mum and decided I would have to deal with the pain to get what I wanted.”

Endometriosis causes damage

Endometriosis is a debilitating gynaecological condition affecting around one in ten women in the UK and can damage the reproductive organs, as tissue similar to that lining the womb starts to grow around the ovaries and fallopian tubes. Symptoms include: painful, heavy or irregular periods; pain during or after sex; painful bowel movements; fatigue; and infertility. More than half of sufferers will have been to A&E with excruciating pain.

“After one of my operations the doctors said that it looked as though someone had poured a load of concrete down there,” says Shanna who lives in Essex.

“I had first been to see a gynaecologist when I was 13 but my endometriosis wasn’t actually diagnosed until I was 21 after an operation to remove an ovarian cyst. I had a number of operations, averaging around one a year, to remove scar tissue and I was in such terrible pain all the time. I was regularly in A&E screaming with pain and had to wear morphine patches.

“I knew if I wanted to have children,  I would need IVF as both of my fallopian tubes were blocked. The doctors had basically told me that the next time they operated on me they would have to remove everything.”

IVF treatment at Bourn Hall Wickford

In 2014 Shanna married Dean and the couple decided to try to complete their family with treatment at Bourn Hall Wickford.

“I had successful IVF treatment in London with my previous partner, but we opted to go to Bourn Hall as it was closer to home and felt more convenient,” she says.

Shanna and Dean had their treatment shortly before Bourn Hall opened its state-of-the-art Wickford clinic and so split their treatment between the Wickford satellite clinic which existed at the time and the Colchester clinic where she had her egg collections and embryo transfers. “I just missed out on being treated at the new clinic,” she laughs.

“When we arrived at Bourn Hall I was 33. I didn’t feel that old but became aware that I was a bit older ‘in egg years’ than when I had my first treatment and that might affect my chances.”

By an amazing coincidence, as Shanna walked in the door she was recognised by Bourn Hall Fertility Nurse Angela who had previously worked at the London clinic where Shanna had her first treatment.

“The nurses at Bourn Hall were fantastic, they were always so kind and answered all my emails, nothing was too much trouble,” says Shanna.

Sadly, the  couple’s first IVF cycle was unsuccessful but, undeterred, Shanna was keen to embark on a further round as soon as she and Dean were able.

Hysterectomy or motherhood choice 

“It was hard when I didn’t get pregnant, in fact my period came on my birthday,” she says. “Also I found it difficult because I knew that my body could do it because I had succeeded in having my son, Henry, but equally already having a child gave me comfort and made me feel lucky and grateful.

“My son was involved every step of the way with my treatment for a little brother or sister and used to watch me doing my injections and I used to tell him that it was to ‘help mummy’s eggs work’. When my first treatment didn’t work I explained to him that ‘mummy’s eggs hadn’t hatched,’ it was the only way I could think of to explain it to him.”

Shanna and Dean’s second cycle of treatment at Bourn Hall was successful and on 26 January 2018 they welcomed daughter Arabella. “I felt a rush of love for her straightaway,” says Shanna.

Shanna doesn’t regret her choice between hysterectomy or motherhood.

“When I found out I was having a daughter I did worry a bit that she might develop endometriosis when she is older, as it can be hereditary, but hopefully things might have moved on in a few years in terms of treatment. And at least if she experiences symptoms when she is a teenager I will know what it is and we won’t have to wait seven years for a diagnosis like I had to.”

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Shanna and Arabella

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Katherine has twins after test revealed blocked fallopian tube

Katherine and Daniel from Essex are delighted to have twins George and Thomas.

blocked fallopian tubes

The couple first started trying for a baby in 2011 but when Katherine hadn’t conceived after more than a year they went to see their GP. “The doctor put me on Clomid and when I still didn’t fall pregnant we were sent to our local hospital for tests,” reveals Katherine.

A dye test showed that one of Katherine’s fallopian tubes was blocked. “It was actually a relief to begiven a reason why I wasn’t getting pregnant,” says Katherine. “I hadn’t had any symptoms and we led a pretty healthy lifestyle so I had no idea what the problem was.”

Referred for IVF

Katherine and Daniel were told that they could be referred for IVF treatment and they opted to go to Bourn Hall Clinic.

Over the next couple of years Katherine sadly had three miscarriages, twice following IVF treatment and once after a surprise natural conception but despite their setbacks Katherine says that she and Daniel did not give up on their dream of having a family.

“I changed my hours to part-time at work to reduce my stress levels,” says Katherine, who is a PE teacher, “and we went back to Bourn Hall for further treatment using two frozen embryos from previous treatment”.

Intralipids to help immune cells 

This time around the couple also had intralipids, which is a source of fat and energy normally injected. It is thought that intralipid is able to change the immune cells in the uterine lining, making the environment in the uterus friendlier towards the embryo.

The couple were ‘cautiously optimistic’ when Katherine fell pregnant for a fourth time but tried not to get their hopes up too much because of the previous miscarriages. Happily the pregnancy went full-term and George and Thomas arrived on 27 March 2016.

“Since the boys have arrived it has been a whirlwind,” laughs Katherine. “We have had lots of support from our parents and we have to be very organised but I can honestly say that it has been worth it. We are loving every minute of it.”

blocked fallopian tubes

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