Infertility Awareness Week Part 2

So I have been a bit of a bad blogger & blog reader this week as I have been concentrating on various discussions elsewhere in my computer on infertility awareness as part of Infertility Awareness Week.  Thus the biggest thing I have learnt this week is that it appears that there is only so much time per day you can spend online and carry out your normal life!

It’s been an eye opener at the reactions some people have to infertility & it’s treatment, I am genuinely shocked at the lack of empathy out there.   It’s also been an education as to how people deal with it, and the impact it has on their lives.   It has also been a great inspiration for future blog posts.

Whilst online I have been very active in talking about infertility I am ashamed to say in real life I have done nothing this week to be more open. Mainly because it’s not been appropriate and I have decided that that is the key to making talking about infertility not a taboo.  Making infertility not taboo doesn’t mean talking about infertility all the time it means talking about it at appropriate moments. When it should be mentioned do but there is no need to randomly mention it, unless of course you wish to! (MsFertilty I’m looking at you and your queue discussions!).

I embraced this yesterday we popped in to visit some friends and they asked outright where we were and where we were up to, so we told them.  They asked more questions, we shared more details than maybe we should have but no one felt uncomfortable and they are good friends.  Now they know exactly how an embryo gets back into the womb post fertilization in a test tube and I am sure they feel better for knowing that!  I on the other hand am not so convinced by their business plan thoughts of possibly trying a diy version in the garage to make the whole process cheaper for us infertiles, and possibly making them rich!!

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Infertility Awareness Week

So it’s National Infertility Awareness Week for the Americans this week (22nd to 28th April 2012) and given that that the theme for the week is “Don’t Ignore Infertility” it seemed only right that I posted about it. I have googled to see if there is a UK equivalent but couldn’t find anything.

I have a group of friends that live in the computer and we decided that we would mention this week on the parenting forum we all met on. We thought it might be good to let people ask questions and talk about it, especially given the upset that the thread on the newspaper article on infertility had caused a few weeks ago. Whilst the read rate on the thread is high very few people have engaged with us. We also chat on Facebook in a secret off board group and the general feeling on there is disappointment that those we considered friends actually have no interest in finding out more or offering support. Now obviously we chose to post on a parenting forum, it’s very nature means it’s aimed at parents not the infertile but given that people share fairly intimate details on there you would think the empathy would work both ways. I suppose it’s a micro version of real life some people are interested and some people aren’t.

The main difference is that online I am very open about my infertility, in real life I find it tougher. Like many people I am ashamed of it, I am embarassed, I don’t want to make people feel bad so it’s easier to ignore the whole issue, pretend you don’t want children or change the subject and hope no one notices! Over the last year or so and very in keeping with the not ignoring infertility theme I am trying to make baby steps so when people ask whether I have children rather than saying “no” I tend to now say “unfortunately not”. It’s a subtle difference but one that I think shows that I am not hiding that there is a problem, nor am I telling the sordid details to all and sundry! Some people go onto ask, some don’t and that’s OK the main thing is that I am being more open about it all.

Thats’s the thing isn’t it? Until we are all more open about our infertility we can’t expect people to understand because they genuinely probably have no idea. If their journey to children involved the let’s have children chat, let’s have sex, 40 weeks later a baby appears how can they understand? In much the same way that many of us can’t understand how you can just decide to have children and they appear!

So let’s be more open without upsetting ourselves, baby steps that we are comfortable with, because unless we are comfortable with our infertility how can we expect other people to be?

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Maca Powder

Maca Powder hit my radar about 3 years ago when it was named by the nutritionist I was seeing as a super supplement. About the same time I happened to pick up a magazine of dubious quality in a doctors waiting room and it was mentioned in some kind of “my miracle baby” article. Must be a sign I thought so went off to google.

I asked on a parenting forum I go on and got some fairly short shrift answers saying how ridiculous it sounded,  undeterred I googled some more to try and see if it was something I should be trying.

So along with many other supplements Maca is supposed to boost your fertility by improving your hormones. Now this is where is gets a bit iffy it boosts your progesterone levels which can help sustain a pregnancy, if you know you have low progesterone.  Some of the indictators that iu have low progesterone are spotting mid cycle and light periods. However if you have excess progesterone levels which is common if you have pcos it could therefore cause your levels to rise even higher and cause more issues than it solves.  My opinion is that it is a supplement that shouldn’t be taken without proper support to make sure that you aren’t doing more harm than good.  Probably in conjunction with blood tests.  In fact on further reading I was horrified that my nutritionist had recommended it so blindly, it actually destroyed my trust in his methods, which was a shame as a lot of what he talked about and advocated did make sense.  I suppose it’s one of those situations where the desperate need for a baby can sometimes lead you down paths that you aren’t always comfortable with.  The good thing being that as long as you continue to question what and why you are doing it you haven’t completely lost the plot!

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Wedding Chitter Chatter

I went to a wedding the other weekend of an old university friend, unfortunately Villa Boy had to work, as did a couple of other friends other halves so for the first time in ages it was like old times. That’s not to say I don’t like my friend’s partners but sometimes it’s nice to catch up and reminisce without having to consider if someone feels left out. This particular group of friends are quite brutal in their banter, which is why I love them they make me laugh, a lot. However I have had a couple of years of distancing myself from them as I couldn’t cope with the well-meaning “when are you having kids” banter. Last year the 40ths started and the banter was there about why didn’t we just have kids, I snapped and said “well we can’t”. At this point I should probably add that this group is all boys, we lived together in a big house with 1 other girl in my final year, somehow it’s weirder to share stuff like that with boys. As ever they were properly supportive and I felt stupid for worrying about seeing them or about it coming out. Although I was glad I wasn’t drinking, which I hadn’t done as I thought if they started with the banter if I was drunk I would cry, turns out they were all so nice that would have made me cry if I had been with alcohol at the time!

As ever with groups there are different levels of friendship and I spent a chunk of my late 20s as the “friend with benefits” with one of them. Unsurprisingly once I met Villa Boy and then he met and married his wife quite quickly, we didn’t meet up without the others anymore. They had their first child at around the same time as our first baby would have been due. In some ways this added to my sadness as a lot of the group had already had babies and I had those daydreams of where you see your children being similar ages as the catalyst for a renewal of friendship (obviously without the benefits!). I missed having him as a one to one mate and would like to see more of him and his wife, who seems lovely but I don’t really know. I also know that him and Villa Boy would actually get on very well, they get on well in a let’s get drunk way but don’t really know each other outside of that environment. Anyhow he was the one that I cracked with on the “OK I admit it I’m infertile” as he was the one that had obviously been tasked with finding out why I hadn’t been drinking on social events and knew me well enough to say “what’s going on Barrenyears?”. His initial response was a manly hug and a confession that they were about to start tests as number 2 wasn’t appearing. I wished him and the Mrs lots of luck, and went home feeling lighter than I had for a while.

It was nearly a year later when he popped up on facebook messenger one afternoon, most out of character and after initial pleasantries were exchanged he said “we’re about to bring in the high-tech response”. I loved the cryptic nature of this, as if someone might read his facebook chat, I immediately said “with the aim of increasing in numbers? – I’ll email you we’ve got that t-shirt now”. We had a little email exchange where we exchanged lack of reproductive news and later that day we spoke. It was strange as he expressed bewilderment at his wife’s reaction to stuff. I felt I had a privileged insight into how I must appear to Villa Boy. Turns out they had had a post 12 week scan miscarriage and a couple of goes of iui so had really been through it. “She’s so angry” he said, “I don’t understand how she can be so angry”. He also didn’t understand her need for knowledge to understand why, what and where to go next. We chatted, it helped both of us I think. For the first time I really had to explain, and almost justify where the anger comes from and why. I offered an ear to his wife, who as I said I don’t really know (and have to admit I was never sure whether she liked me or not!). Surprisingly she called, the next day. Her opening line was “I’m so glad he spoke to you, it’s like he’s finally admitting it and because he’s not really a research it type of guy the fact he sought out talking to you has really helped me realise he finally gets it”. I have to admit I felt all warm and fuzzy inside. Villa Boy was bemused, mind you his only input had been his comparison of the wanking rooms and which was best!

So at this wedding last week, I obviously asked where the Mrs was and she had gone to her parents for some r&r following a day 6 transfer the previous week. We talked numbers, Matey expressed his delight at how much better his sperm had been on the day than it had on his previous 2 samples. I congratulated him, and explained how much Villa Boy’s had improved too. Another one of those conversations you never though you’d have really. We laughed at how we were genuinely interested in each others sperm counts and egg numbers and quality. We giggled at how frivolous 2 tight people had become when it came to paying for IVF. It felt great to be discussing it with a mate, who got it rather than was just empathetic. There is a certain level of humour associated with IVF that I think you only really get if you have been there.

Again I came away with a bit of a spring in my step and texted later that week to say Cheers mate and fingers crossed. He texted back to say it hadn’t worked. I am gutted for them I really am. I texted his Mrs to say I had heard and I was sorry cos people acknowledging it helps, or at least it helped me. I think she appreciated the gesture.

I seem to be writing a lot about friends and friendship and I think it’s because their support or lack of supportive is so important with being able to cope with this all. Not necessarily in needing big gestures or lots of contact but knowing that your friends accept you for what and who you are. As is often the case those that are most supportive are not necessarily the ones that you would immediately think of and that is good, it enriches the soul. I also think that old friends are a special breed; life does mean you may move in and out of each others lives but at key points you pick up with friends for different reasons. In this case, we were single when others were settled down, now we are infertile when people have completed their families. In a strange way it’s nice to pick up again and be supportive in a completely different way and get to know his wife, which actually had we not shared this rubbish we may never have really done. So as I often say there really is a silver lining to a lot of these clouds.

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Conversations you never thought you’d have….

Another weird and wonderful part of ivf and fertility treatment is the knowledge gained on your partners ejaculation habits. I seem to know far more than I think a girl needs to on his self ejaculation habits, plus I have spent more time than is strictly necessary obsessing this.

It is probably fair to say that one of the reasons we have stayed with our clinic is because Villa Boy likes the male set up. Our previous clinic the room was merely partitioned off and Villa Boy said it was quite off putting. He also had a bad experience when his GP referred him for what he thought was his NHS sample, a room in a clinic in London where he could hear a lot of people coming and going which he said was a bit distracting plus the material for assisting the process was kept in a squeaky drawer and to top it all they charged him 57 pounds when he had finished! He was too shocked to query it poor thing.

So when he practically skipped back from his first go at this clinic telling me all about the bed, the films on loop on the wall, the better quality magazines. it boded well. In fact I reckon that egg collection day there is one of Villa Boy’s favourite days, he gets to go for some self loving and then takes himself off for a fry up whilst I am in theatre what more could a boy want?!

We obviously have sex regularly but I have to admit that we treat the ivf cycle as a bit of a holiday from our normal routine, and sex doesn’t tend to happen so frequently. This leads to me to worry that Villa Boy isn’t ensuring that he is keeping his supply fresh. This in turn leads to discussions as to whether he needs my help or whether he has sorted it himself. Never did I think I would be so interested in his wanking habits! Never did he think he would have to share that information! It’s a glamourous game thus infertility lark isn’t it?

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Dhea – friend or foe?

Dhea is a hormone supplement that is seen by some as the key to youthfulness.   The side effect to this is that it is supposed to improve hormone levels which in turn leads to an improvement in egg quality in women with low amh.  It is also meant to decrease the risk of miscarriage.  However there is a lot of contradictory research out there as to whether it does do any good or not.   The Centre For Human Reproduction was the pioneer of this treatment yet it has not been widely accepted elsewhere.  As a clinic The Centre for Human Reproduction have some great stats for older women so anything they do cannot, in my opinion be dismissed.  Having said that ARGC who have the best results in the UK don’t recommend it which also can’t be dismissed.  The ladies on fertility friends are never short of an opinion and there are a number of discussions about it on there which are worth a read if you are considering it.

As I have said before when you are diagnosed with low AMH it feels like you have nothing to lose.  Low AMH was for me rock bottom and I was willing to try anything and everything if it might help.  My theory being that if I needed a miracle to get pregnant then anything has got to help, and nothing was likely to hinder me.   However I was recommended I take it by my acupuncturist and having read up on it I am not sure I would start taking it without some medical type input.  Frankly I think I would be too scared of my already slightly dodgy hormones being screwed further.  Now whilst I am obviously not pregnant one of the good things to have come out of our ivf cycles is that my egg quality isn’t an issue now this may or may not be down to the dhea but I have to admit I am too scared to stop taking it just in case.  In fact I did have a little break from it post last summers treatment and working on the 90 days to work through your ovaries theory didn’t restart it 90 days prior to our January treatment which was a disaster.  It’s not scientific proof but in my humble opinion for me it has to be doing something that helps and that’s good enough for me at the moment.

So if you fancy giving it a go I would talk to your doctors and see what they say and if possible get them to source it for you.  I wouldn’t just buy it online but if you do it’s quite hard to find in the UK so you may have to go to a US site.  You need to take 75mg a day, preferably with meals and may want to build up to this dose gradually.   Make a note of how you feel prior to starting it as it can have some side effects that make it not viable for some people, I haven’t felt any different since taking it so cannot comment on the bad bits but acne, hair loss, stomach upsets are some of the problems that people report.   Having said that I think most things can make some people feel bad so it’s only about how you react, and of course hopefully getting pregnant!

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What will I miss..

A lot of the time people say you never miss what you haven’t had, and I guess that is true for a lot of things.  I am not convinced that it is the same for parenthood though.  I know that there will always be a part of me that misses not being a mother.  After the reaction to Bibi Lynch’s article in The Guardian it really got me thinking of the things that make me sad about the possibility of never becoming a mother.  Coupled with the comments on the article that said she should embrace being important in other children’s lives and the reaction to her comments on being an aunt it’s been an eye opener into how people don’t really understand.  Her comments about being sad about being a beloved Aunt were taken to mean she saw it as second best and that she was selfish and immature for seeing it as so. Now I love being an Aunty and it was the huge joy my godchildren brought to my life that made me realise that yes I really did want to be a parent. But it isn’t the same as being a mother, I know that despite not knowing what it’s like to be a mother. My heart melted the first time I was called Auntie, ironically by my god-daughters cousin, the first time I was called Auntie by a child who properly knew me it made me smile for weeks. Especially as I have never presumed I should be called that, it is a title the children that call me that have decided I deserve, well apart from the nephews they had no choice! Being an Aunt is a tremendous honour, it’s a role I delight in and that brings me many smiles and happy times.  I love the way small people are pleased to see us, I love buying them gifts, being there for events in their lives or being part of something that will always be a childhood memory.  It’s a role that I hope will continue to bring mutual joy as they grow up and I grow old.  But it’s a different role it isn’t the same as being someone’s parent.

I appreciate as a parent that I won’t jump out of bed every morning delighted to spend another day being unappreciated as I wipe bottoms, prepare food, soothe tantrums, worry incesently and juggle the demands of motherhood.  But I do know that there will be many moments that will make up for the drudgery of motherhood, those smiles and memories of small moments that make parenthood worthwhile.  So for me the things that I know I am missing by never being a parent are:

    • never being called mummy (or mom or mum).
    • never getting a home made mothers day card
    • never seeing Villa Boy being called daddy or see him cuddle his own child better
    • never being the one person who can make everything better – yes I give great cuddles to nephews, god-children, and other children we have close relationships with, but ultimately only mummy or daddy will do in some situations.
    • never sneaking a look and seeing my children giving each other a big hug
    • never looking at a thoroughly decent young person and thinking we helped shape that
    • never looking in at my sleeping child before I go to bed
    • never having to teach a child to ride a bike, ski, read, count, cook – yes I can help with this but it really isn’t the same, well I presume it’s not I get ridiculously excited at these things and can only imagine the excitement my own children achieving these things would bring
    • never have a little person sneak into my bed night after night because it’s where they feel safest
    • never attending a parent evening to talk about my child
    • never watch my child being invested as a cub or brownie (as an ex cub leader this makes the list as again I watched with pride at other children and again can’t imagine the emotion of it being my own!)
    • never having the choice in how many children we have
    • never being the real annoyance to a teenager that only parents can be! Our friends with teenagers are the real annoyance, we are just their friends, I like to think that we are still in the “alright to grunt at category!” we are certainly never ignored in the same way as they ignore a parent !
    • never filling my child’s christmas stocking.  Yes I’ve helped and it’s exciting and lovely to see their faces on Christmas morning, but….
    • It boils down to never being a family with children and all those silly things that come with it that make your family unique.

Having a child won’t make our lives perfect, we won’t suddenly become people that we’re not. There will be days (hey may be even weeks and months) when we think what were we thinking? why did we try so hard for this nightmare? were we mad?  We’re big enough and grown up enough to know that.  Parenthood is no doubt a different type of heartbreak, hoping, misery and drudgery but one that I would give anything to experience.

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Panda Loving

You know you’ve crossed a line when the main thoughts that enter your mind on hearing that Edinburgh zoo pandas need to shag today because Tian Tian is ovulating is how awful they have all that pressure. Fancy the whole world knowing that you need to get down to it. It was bad enough when Villa Boy said he couldn’t go to the pub with the boys because he was required for shagging duty when we were on holiday last week! I can’t imagine the whole world knowing. On the other hand I am secretly, well not so secretly now I have told my blog! thinking that only having that pressure once a year isn’t all bad. Obviously I know that really 1 opportunity a year to get upduffed is not a good thing but seriously after 3 years of shagging for reproductive purposes the thought of not having that constant pressure every month of have we timed it right is immensely appealing! So good luck to Tian Tian and Yang Guang – although if their well timed sex works on this one occasion my congratulations will probably be through gritted teeth! 🙂

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Infertiles vs the world?

This article by Bibi Lynch entitled “Mothers Stop Moaning” provoked an interesting response both in the comments below and on an internet parenting forum I use.   Stella Duffy’s response on her blog is, in my opinion a good alternative version highlighting some of  the things that Bibi Lynch was trying to say.  The difference in the 2 articles is that horrible thing called time.  In my mind Bibi is in the throws of coming to terms with the reality that she will not have children, Stella is 9 years along on that road and has a little more perspective.

Bibi’s article isn’t pretty and I am sure on reflection she may wish she hadn’t revealed her deepest darkest thoughts.  Jealously is a vicious emotion that makes other people uncomfortable when it’s on display or admitted.  I am sure however that many of us along the way have had similar thoughts.  However I am astounded that the article can be read without leaving the reader with some sympathy for her and the depth of despair she appears to be in at the moment.  Surely as a parent or infertile or somewhere in between you can feel sympathetic to another human being’s pain?

What I found upsetting was the way that people read the article and homed in on various points, on the forum I go on much was made of her dismissal of post natal depression.  I read that sentence as depression is horrible, regardless of the cause, pnd depression is no worse to deal with than no obvious cause depression or infertility caused depression.  I understood her opinion is that having depression caused by having a baby has in some ways got to be at least a cloud with a silver lining because you have a child.  I know from seeing people that have pnd that it doesn’t always feel like that but I can’t help but feel that whilst she has worded it clumsily she is trying to say I too have suffered the pits of depression but as I climb out of the bottom of the pit that I reached I can’t look at my child and think it was worth it.  Now maybe people don’t think like that, and they probably don’t but Bibi seems to think that she would and we have to respect  that.

Others have made much of how she has to take some responsibility for leaving it too late.  It’s easy to say but people are quite dismissive about age related concerns.  I can remember saying after my 1st miscarriage when I was 36, is this likely to be because of my age, and was assured by doctors and friends that 36 wasn’t too late.  Turns out it was because 4 years later we have run out of time.  Do I regret not trying sooner? It’s a difficult one, Villa Boy and I spent more time discussing whether to have children or not than a lot of friends who had children earlier. We wanted to be sure that our child was wanted, that we knew what our expectations of each other were, that we could afford the disruption to our lives not just financially but also emotionally.  So according to a number of internet forum goers this makes us stupid,naive and to blame for our inability to conceive.  Ironically had we tried and failed earlier to get pregnant it may have been tougher as we wouldn’t have been able to afford the ivf treatment we need and can afford.

I know that a lot of comments aren’t aimed at me personally and that people would say “oh I didn’t mean it like that or it doesn’t apply to you” if we were sat in a pub but the sort of comments coming out do nothing to dismiss my deep held belief that people somehow think you are a bit simple if you can’t manage to get yourself pregnant successfully.  There is no doubt to me that people don’t get that there may be no options to get yourself pregnant.  I often hear “I’d try everything”, “you just have to keep going”, what they don’t seem to understand is that sometimes there is nothing more that can be done.  Every avenue has been exhausted.  The look you get is as if you must be wrong there must be more you could do, you obviously just are not trying hard enough or haven’t investigated enough options.

Which brings us nicely onto the “why doesn’t she just adopt brigade”.  Yes there are lots of children that need homes, but not as many as you think and it is the type of children available for adoption that people don’t understand or maybe want to admit.  Quite rightly society has moved on and as such there is no shame in being an unmarried mother, a source in years gone by of babies for adoption.  In most cases social services try hard to keep parents and children together, this means  that it is older children who are mostly available.  What this also means is that these children have lived in not ideal environments and have not had the best start in life, which means that parenting them takes a lot of patience, a lot of skill and a lot of determination.  We as a couple and extended family are not strong enough to take on this particular challenge and route to parenthood. I used to beat myself up about this thinking if we weren’t prepared to do this did we want to be parents enough?  Now I realise it isn’t anything to be ashamed of it’s just not for us.  My admiration for people that can do it is immense but I shouldn’t be ashamed that we can’t.

Who knew that a women’s rant could provoke such responses and upset so may people? As people play grief bingo over what is worse – parenthood or infertility; depression or post natal depression; your body being ruined by child bearing or by it’s inability to bear a child;  being in a bad relationship with children or not being in a relationship and wanting children; surely we all need to just pause and say to our friends, family, colleagues “I’m sorry you’re having a tough time, is there anything I can do to help?”

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The glamour of infertility goes on and on

There are many glamorous things associated with infertility, things that become normal yet other people still baulk at having to have done. Internal scans, the public nature of your sex life, constant criticism of your insides, regular blood tests the list is endless. One of the things that for me tops this list is the need to have all your STD tests up to date. There is something somehow very very personal about needing to get a clean bill of sexual health in order to reproduce and something that in many ways still feels taboo.

I had my first HIV test when I was pregnant the first time, and whilst I was 99% certain I was going to come back negative I felt a degree of relief when it did. After all it is one of those things that you can have without knowing. Plus I remember when it was still taboo to admit you had had the test, and if you admitted that you had had a test, even if negative it could bump up your insurance premium as you obviously thought you were at risk – how mad is that? It did however feel strange to have another one 3 months later and then another one 6 months after that, and certainly the fear was much less after the first one. Still I think it is good for all pregnant women to be tested, and for normal fertile women their testing would be spread out over a number of years.

The good old NHS will fund the STD tests required for ivf even if they are funding nothing else which is great and a saving of probably a couple of hundred pounds, hurrah! The downside of this, in our area is that you have to go to the glamour of the Sexual Health Clinic. Villa Boy and I have now been twice for the full monty of tests. The first time we went was Valentines day in 2011, well it was the only morning we could both skive off of work to go, this year we went on February 29th. On both occasions when people have asked how we have celebrated the day I have felt unable to tell them the truth and I am not sure why. I suppose it is still a taboo subject isn’t it? getting yourself tested for STDs infers that you may think you have one. My mother was intrigued about what the other people in the clinic were like, when I said well they looked like Villa Boy and I in the main she pulled a face and said well I suppose all sorts of people get “caught out” as if it were something sordid. That made me angry surely in this day and age we are all grown up and sensible enough to know that ivf aside being screened regularly is a good thing? Or maybe not in my mothers case!?

Anyhow our local clinic is amazingly civilised and very organised. We didn’t have to wait long and miraculously were both called at the same time. The nurse I booked in with complained that they should have a quick list for ivf rather than having to list each test separately, it seemed odd that they didn’t given that apparently ivf referrals is a big chunk of their work. Secondly she then apologised for presuming that I didn’t think I was at risk of anythig since my last test, and then asked if I had had more than 1 partner in the last 12 months, I replied by saying that I wasn’t sure I should be doing IVF if I had! She then said “is it OK if I presume you don’t want condoms?!” er yes, although as I pointed out in the ivf journey stranger things have happened than being asked to use contraceptive. All in all we were in and out fairly quickly and celebrated by going to the pub for dinner, so the evening wasn’t all bad! 7 days later we were texted our results, and thankfully we are both clear of everything once again. It makes me wonder what happens if you’re not and how distressing that must be to have to delay fertility treatment to be treated for something you didn’t know you had.

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