IVF after trachelectomy

Hi ladies

After having a radical trachelectomy in Feb 2015 and trying to conceive unsuccessfully for the last 10 months we are about to embark on IVF. As I don’t have time to set up a proper blog, I am going to post about the process on here for anyone interested - now or in the future. Equally, if anyone has any tips, tricks or advice PLEASE share.

A little about me to begin with…

At 34 years old and newly married, my partner and I were ready to start trying for a baby. As I was a couple of months late having my smear (wedding planning/honeymoon etc.) I thought i’d better get everything checked out.

Much to my surprise (after never having an abnormal smear) I received a letter with the dreaded words ‘severe dyskorisis’. After much crying and googling, I had diagnosed myself with cancer and was in a right state.

To cut a long story short, after being given a Lletz and a cheery ‘see you in 6 months’, I was called into the hospital 2 days after New Year. This is when they broke the news that they had found cancer in the sample and it was staged 1B1. I was told I would need a trachelectomy as a minimum and possibly a hysterectomy. WOW words cannot express the shock and fear i felt at that time.

I was extremely lucky that my scans were clear and I had a successful trachelectomy 4 weeks after diagnosis. Recovery went well and we were given the green light to conceive after 6 months. and…despite much trying…nothing happened!

After 9 months I saw my GP and had to push, push , push to be referred for tests. I know the wait is usually 12 months but after a trachelectomy and cancer there are extenuating circumstances. What if it comes back and i need more treatment? What if we have other issues, apart from the obvious lack of cervix? I LOVE the NHS, it saved my life and my fertility, but you sometimes have to be your own advocate and fight for your health.

So we got our tests. And low and behold there are male factor issues affecting our fertility as well!!! Some have very little chance of natural conception and we would have wasted another 3 months trying and worrying.

So that’s it. We have been referred for IVF.

The doctor has said that we may do ICSI (where they inject one sperm into each egg) but this will depend on whether or not the vitamins and healthy lifestyle hubby has been on to up his count has worked.

They are also going to do a ‘mock transfer’ to make sure they can get through to my womb before they go ahead and try with my precious little embryos. I cannot find any information on IVF for ladies post trachelectomy so I am hoping this continued post can help someone else in the future.

So, whatever happens I’ll update you soon! Wish me luck!

N x

Hi Nellie,

I also had a Trachelectomy for stage 1A2 in February 2011 and had no luck conceiving. I am currently going through IVF and have just completed a Frozen embryo transfer just waiting till test day now.

There are many success stories on here and also a Facebook group with so much information.

Good luck for your upcoming treatment. Hopefully we will have success stories of our own soon 

Claire x

Wish you good luck Nellie! I might follow the sam in sptember if nothing happens...

how did everything go? I did my mock transfer today and it was tricky but successful.  i am supposed to transfer one next month

Hi, I have been a little delayed as I decided to have a transabdominal cerclage before IVF.  I am just waiting for my period and then the downregging begins? Have you started that bit yet and how is it? 

N xx

Hello

 

im wondering how things have now gone for you? I myself had a successful ivf treatment prior to cancer diagnosis.  I am currently waiting for my staging which will tell me either nothing more in relation to treatment or radical hysterectomy.  We were planning on starting our second ivf journey this month before we had the diagnosis so things are a bit hard to take in at the moment.  I'm thankful our first Ivf was successful but should I not need any more treatment it would be great to hear of some succesful I've stories post treatments.  Plus if anyone has. Any questions re IVF and clinics then I'm more than happy to help!

Hello!

I haven't really gotten much further along at the moment ......but probably enough for a short update.

I have just had a transabdominal cerclage done by Dr Wales in London (a stictch around my lower uterus to suport a pregnancy as I have no cervix).  This is to give me the best chance of holding a pregnancy for as long as possible.  I have now had my first period since the op at the usual time -(cue a big sigh of relief as I was expecting that there could be a delay due to surgery) - and I'm ready to get cracking.

I am booked in to have a mock transfer on the 22nd of August.  They need to make sure that they can get through my scar tissue and stitch and into the womb.  If they don't try this in advance, there is a danger that they will not be able to find my opening when they are trying to transfer the embryo. They plan to do this mock transfer at about 21 days into my cycle, so that they can also take a look at my womb lining.  This is also the optimum time to do a womb scatch, which is a promising new technique to make IVF more successful.   The idea is that controlled trauma to the womb forces it to have an immune response and the womb is 'rejuvinated' in time for the next cycle and an embryo is therefore more likley to implant. The hysteroscopy itself is likely to give similar benefits to a womb scratch.

I will not be given any anaesthetic for this procedure so I am a little nervous!  Even a smear hurts nowadays as everything is so tender up there!  They have the head of the IVF clinic covering all of my procedures though due to my history, so i know I am in very good hands.

I am also due to start medication for down regulation on the 19th August.  This is where they essentially use drugs to turn your ovaries off and throw you into temporary menopause.  My husband has been warned by my doctor to tread carefully around me during this time!!  So i am preparing to turn into an emotional monster for a couple of weeks!   The medication will need to be done via injections or snorted up my nose!  I am not sure which to go for.  The injections give me the peace of mind that I am getting my full dose, however the risk of lymphedema after having my lymph nodes removed also worries me.  Any advice would be great!!

We are also prepping ourselves for the cycle.  My husband and I gave up alcohol 6 weeks ago and I also gave up caffiene. We are eating as best as we can and are trying to relax as often as possible!  We are also working with 2 accupuncturists who are based at my IVF clinic and are specialists in fertilty treatment.  The stats on accupuncture and IVF are very prmoising....and if nothing else it is pretty relaxing.  We will probably also incorporate fertility reflexology closer to the actual transfer as well.  As a result of accupuncture and lifestyle changes my hubands sperm count went from 13.7 million to 104million in under 4 months so we are big believers in being proactive and making the most of alternative treatments. 

So that's all that is planned so far.  I am excited, nervous, scared and keen to get on and do this!! 

I will update after I have had the procedure.

N xx

If you do t mind me asking what clinic are you usung? Im

using [Name of clinic removed] on great Portland street? 

Hi Leigh 

I am at [Name of clinic removed] in Nottingham - they are fantastic!! 

Quick update....

I am now 2 days into my injections.  I was pretty nervous about these but actually find them easy peasey! After my trach I had to do anti clotting injections for a couple of weeks and these were far worse than the IVF injections!  My skin is a little itchy after the injection but it only lasts for 5 minutes.  

I have also had my mock transfer this morning.  It was sore and uncomfortable but my Doctor managed to pass the catherter through in under a minute and could clearly see the opening. MASSIVE sigh of releif and another hurdle overcome!  I am so releived about this as I am not sure what the next step would have been if they couldn't get through.  My womb lining also looked nice and thick which is good apparently.  

So I am continuing my injections (suprecur) until my first scan on the 8th of September.  This scan will show whether my ovaries have successfully shut down ready for stimulation.

In the meantime I am going to continue with accupuncture.  I am also going to be doing meditation and fertility yoga (bought a DVD) and start being a bit stricter with my diet (no sugar apart from fruits, lots of protein and fresh fruit and veggies!) 

I'll let you know if I have any side effects from the drugs but otherwise will update after the 8th.

xxx

i think i already have a cerclage in me.  I tried to use my frozen eggs and non survived the thaw, i was pretty frustrated about it, bc i was confident at least one would work.  I have to start IVF all over again and use my fresh eggs now.  If its not one thing its another. 

I'm so sorry to hear this.  How many frozen embryos did you have in storage? When do you start IVF again again?

I already had a cerclage which was placed at the same time as my trachelectomy.  There are different types though and some have higher success rates than others. I wrote to a specialist in cerclages and he recommended I needed a transabdominal cerclage.  

I really hope your IVF goes well and begins quickly.  xx

almost 2 weeks on down regging and the side effects have been kicking in over the last week! I've had headaches, hot flushes and night sweats. I'm also pretty tired out!  Apart from that I'm all good though.  And I am hoping that the side effects mean that the drugs are doing what they need to do.  

I have a scan on the 8th to find out if everything is nice and calm in there - before starting on stiumlation.  woohoo!

Will update again after the 8th!

Down reg scan took place this morning!  I have been doing my busereline (suprecur) injections for 19 days now.  I had a period during this time (as expected) and then also a 2nd bleed.  This worried me, but apparently it's perfectly normal while doing down regulation. 

During the down reg scan they are looking for small follicles on your ovaries and also a thin womb lining under 5mm.  My folicles were very small and my lining was 3mm.  Yay!  These are small victories, but they feel huge to me.  After cancer, infertiltiy and disappointment, the fact that my body is responding well to the drugs is a huge blessing.  I pray it continues! 

I am starting my stimulation injections today, which will be taken alongside the buselerine I am already taking. Next scan is a week today.  If all is well and my body is responding well, we will be looking at egg collection w/c 19th.  I am excited and scared in equal measure.  Excitied because I could be pregnant within the month and scared because I honestly don't know how I will cope with the possible disappointment of it not working.  It feels like we've been on this journey for a very long time.  I guess you just pick yourself up and try again! 

By gods grace I hope it is good news xxx

Hi ladies.  

Time for an update! 

Injections have been going well.  They got a bit sore the day before yesterday but I think I rushed the injection which made it more painful. Lesson learned!  The side effects of hot flushes and night sweats disapeared pretty quickly once I started gonal F, although it was replaced with me feeling weepy (cue crying at the Xfactor!!!!!!).  I was on 225IU of Gonal F each day - I believe this varies from person to person. 

I had my scan at 7am this morning to check how everything is developing. I was super nervous, as there are so many things that can go wrong at each stage. I thank God everytime we reach the next hurdle.   During this scan they are looking for lots of follicles which are developing nicely (but not too many or too developed, as that could mean you hae overstimulated and they may need to cancel the cycle!).  They also look at how your lining is thickening up.

 So my scan showed that i have 14 follicles developing and that they are all a pretty good size for this stage (the biggest is 17mm)  So that is potentially 14 little eggies. FOURTEEN!  I assume 14 is a good number?? But i have no real frame of reference for this so if anyone can shed any light???

The Doctor is really pleased and plans to scan me again on Saturday before (hopefully) doing egg collection on Monday.  

So, all being well TRANSFER WILL BE NEXT WEEK.  I COULD BE PREGNANT NEXT WEEK!! Just writing that makes me SO emotional.  

I know that it may not work and we may have to do this again and I'm at peace with that.  I will be devastated in the short term but I am dertermined to become a mummy and a bit of disruption, discomfort and waiting will not put me off.  

Hopefully I will be back with more good news soon xxx

 

Hi Nellie

14 is a very good number! I was told I had about 10 at the stage you are at now and I ended up with 14 on the day so you may even have more! But it only takes 1! 

Wishing you all the luck in the world, you are so brave sharing your experience. 

Xxx

Quick update!

I had the retrieval yesterday.  They walked me into theatre, popped a canula in my hand and after feeling like i was a little drunk I remember nothing else!  I woke up in recovery to be told that they had retrieved 19 eggs!  I was over the moon.  Unfortunately the hubbys sperm was having an off day (17 million and 25% motility) so they had to revert to ICSI (injecitng a single sperm into a single egg).  This was a little disapointing as hubby has worked hard on improving sperm count, but it still looked positive. 

After the procedure I was very sore.  There is no way I could have worked today and even walking was difficult.  My stomach felt very sore and swollen and is actually more uncofrotable than it was after my trachelectomy! I'm sure the fact that I had morphine with my trach is the main difference in the pain level though!  Paracetemol just does not cut it!

This morning it is still sore but has improved alot! 

I also had the call from the embryologist this morning.  14 of the 19 eggs removed were mature.  Out of this 14, 9 have fertilised normally and successfully.  BIG sigh of relief. Now I am just praying that my little embryo's keep growing and thriving!!  Transfer is likely to be on Saturday!

Will update again on Saturday and then probably disapear for a bit during the dreaded 2 week wait! 

xxx

Thanks so much!  Can I ask how many embryos you ended up with and when transfer took place?

xxx

Hi Ladies,

This will be my final post for a little while as i'm trying not to obsess too much until I can take a pregnancy test!   So lots of days out and cinema trips for me!

The transfer was done on the 23rd of September and we had a beautiful grade A expanded blastocyst put back in!  We also had 2 grade B blastocysts and 4 grade C.   They only freeze anything grade B or above as anything lower is very unlikely to survive the thaw :( Still we are over the moon though!  Lots of people don't get to the blastcyst stage or have any embryos to freeze. 

The transfer itself was difficult.  I had a mock transfer previously and the opening was visible to the naked eye and he got into the womb in minutes.  This time is was not immediately visible and took a lot of painful poking around to find!!  I actually kind of knew that the opening is over to the left, so was able to help them to find it from the feel of it.  Strange but true! So I would advise any women undergoing this to pay atention during their mock transfer so that they also have an idea of where the opening is.  As I say, it was painful but not unbearable.  

We saw a picture of our little blastocyst on the screen prior to transfer and we also saw the tiny blip of light on the ultrasound as they guided it into my uterus!  Amazing!! 

I have to take 2 pesseries of cyclogest a day. This is a prgesterone supplement that all IVF patients have to take during the 2 week wait.  If pregnancy is confirmed they continue to take it in the first trimester to help support the pregnancy.  As a trachelectomy patient it is very likley i will be using these pesseries during the entire pregnancy as it is believed to help the body create a mucous plug to protect the baby.  The pesseries are often used vaginally but with my lack of cervix the risk of infection is higher, so I have to take them rectally.  This is really easy and not messy at all.  I did one vaginally before I knew they had to be done rectally and it was messy as hell! 

So now I am just praying and trying to relax as much as possible.  I am grateful that I am in this postion full stop.  There are too many women who have had to have a hysterectmy before they've had the chance to have a family and my heart goes out to them.  Whatever the outcome of this IVF I need to remember that I am one of the extremely lucky ones and that I can try again. Not everyone has that luxury. 

I hope and pray I will be able to share good news with you soon xxxx