anyone decided NOT to have IVF for unexplained infertility?

(50 Posts)
nouveaupauvre Mon 27-Sep-10 22:16:16

after 18 months tttc number 2 with no success, we are looking at a diagnosis of unexplained infertility. which means it's IVF, adoption (which neither of us are keen on) or just accept that it's probably not going to happen. we have a three year old already and although we desperately want a sibling for him, am finding myself weirdly hesitant about IVF.
maybe it's having had a couple of close friends go through real turmoil with it - one marriage nearly broke up over it - but am now starting to wonder whether we want to spend money we haven't got on what's probably a wild goose chase (I'm nearly 40 and as nobody knows what our problem actually is, i guess the chances of success are not that great) and potentially putting the family we do have under a lot of strain. i just wonder if we'll regret later not having given it every possible shot.
has anyone been in a similar position and decided not to have IVF but keep trying naturally? or had unsuccessful IVF but wished later they hadn't?

fedupttcnosuccess Mon 27-Sep-10 22:24:55

Moi.only we have no dc. I'm 40, he's 43. Been together 7 years. Ttc seriously for the past two. After numerous tests: unexplained infertility diagnosed. Hesitant to intervention as strongly feel that if there's no diagnosis of problem then how can we fix what seemingly (according to tests conducted) is perfectly normal. Still optimistic that we will conceive naturally, although if nothing changes, we are considering ivf privately in the new year. Time is running out fast. Biological clock is deafening us both. Both in stressful, but fulfilling jobs! Parents need us more and more. But we are now feeling our own mortality: and asking who'll be there for us? Questioning our life choices more and more frequently, while trying to remain positive.

Hulababy Mon 27-Sep-10 22:29:24

I have unexplained secondary infertility. I am 37y now, as is DH. DD is 8y and been TTC since she was 2y, so six years now. I was dx with Asherman's Syndrome and had a couple of ops and treamtment for that, also had 6 months of Clomid. But nothing has worked. But Dh and I decided against any further intervention, just felt it wasn't right for us really, esp after all the hormione treatment I had to endure after my ops - had had enough. Haven't ruled out pregnancy as such yet, but after all this time it is very unlikely. Although not particulalry happy about the non arrival of a second child, I am resigned to it now I guess.

notcitrus Mon 27-Sep-10 22:35:35

I've always been against IVF, even after 7 years of trying for a baby. Luckily MrNC agreed after I explained some of the details and the likely success rate. After I somehow produced ds, we're now going through the various drugs and stuff to try to get me to conceive again, but basically I've decided to give it until I'm 40 (4 1/2 years) and then give up.

I'm pretty sure the stress and anxiety of IVF would just not be worth it for me.

fedupttcnosuccess Mon 27-Sep-10 22:38:18

Notcitrus: which drugs are you using? Have you had a diagnosis then?

fedupttcnosuccess Mon 27-Sep-10 22:39:07

Did you conceive your ds naturally ?

nouveaupauvre Mon 27-Sep-10 22:52:01

thanks for all the replies. yes ds was natural conception and happened pratically first attempt - all of which made me far too complacent about how difficult it would be to have a second sad. stupid really that i worried about being too old when i started trying for ds at 35 but didn't occur to me that i was maybe leaving it too late for a second...

Whenisitmyturn Tue 28-Sep-10 07:39:53

Hi,
Slightly different for me take on things for me. We're almost on a year of TTC number 2. I am pretty certain that if we don't conceive within the year that we will acquire a label of unexplained secondary infertility as tests so far show nothing imeediately wrong. If that is the case then I have already set the wheels in motion to get an appt at a local FC. I will try IVF if that is what is recommended, and would like to donate eggs whilst I do it if we go down that route. For me the thought of not trying is too much to bear. The way I see is that IVF has higher success rates than a natural cycle so would like to give us that chance.

Good luck with whatever you decide.

Whenisitmyturn Tue 28-Sep-10 07:40:49

sorry too early in the morning to get my words out straight!

Unexplained infertility is actually no diagnosis at all. All it means is that they have failed to date to find out what is wrong. It is also a term sometimes given to patients when not enough investigation or tests have been carried out.

I would urge you to ensure that you have been properly investigated. People who are told that they've had "all the tests done" often have had some missed out.

I will put up a list of commonly missed tests.

The following tend to be omitted in the course of fertility investigations:-

Adequate x-rays of the uterus which may show abnormalities not seen at laparoscopy in either the tubes or uterine cavity.

Hysteroscopy - telescope inspection of the inside of the uterus which may occasionally show abnormalities not otherwise seen.

Carefully timed post coital testing to see if sperms are surviving in the cervix

Repeated sperm counts over several weeks and months to make certain there is no subtle abnormality

Testing the sperm in special media - such as swim tests or velocity testing. When this is done it can sometimes uncover a hidden cause for the supposed "unexplained" problem.

Thorough hormone tests to detect abnormalities of male hormone or early falls in progesterone.

Scanning of the ovaries to see if follicles really are developing and there is no sign of polycystic ovaries.

Loujalou Tue 28-Sep-10 09:33:23

Attila how likely are you to get the above tests on the NHS if you have already got a DC though? Have my first FC appointment this week so will find out what I can from them. Is it a bit of a postcode lottery? Thanks.

WkdSM Tue 28-Sep-10 09:43:19

DH and I wanted children together but it never happened.

Went through a few tests, but tbh found them quite invasive.

I'm hopeless with medicine - even antihistamines give me hallucinations if I take the correct dose - so we made the decision to let nature take its course. We did not think all the hormones and drugs would be good for me and did not want this to become the central reason for our being together.

Do I regret it - I suppose sometimes when people go on about being a 'real' woman and fulfilling their biological purpose (!)- and total strangers asking why we don't have kids.

But we have a wonderful life together and do lots of things that we would not find so easy to do with kids.

Oh - and just to make me sound really sad - I have my dog and my cat and they are my substitute children! Sometimes I prefer them to the stepkids...............

CoconutCath Tue 28-Sep-10 09:59:59

Hi. I can relate to how you are feeling. We started TTC no 1 the month we got married (May 2008), though having waited a long time to find my Mr Right I was by then 37. Nothing happened for a year so we got tested last summer. All tests fine, so we were diagnosed with unexplained subfertility. We were recommended to keep trying naturally but to start thinking about IVF because of our ages. I had always been against IVF not least because my sister had 7 unsuccessful rounds (another friend has also just had her 5/6th unsuccessful round) and went through the mill (they have now accepted their situation and have a lovely big dog!) I was also always against it because I hate the idea of messing about with your hormones, the general nightmarishness of it and the chances are that it won't work. I also thought, if there's nothing wrong, we don't need it, it won't help (it will happen eventually). Money was also an issue because we would be 6 months shy of qualifying for funding (you have to have been trying for 3 years and be 39 or under in my area). So, we carried on trying for another year+ and still nothing.
However, as I approach 40 in December, and after much soul-searching, we started IVF last week (aged 39 and 40). I am still cynical about it and totally prepared for it not to work, but here are some reasons that helped me/us make up our minds:
1) If it was 100% guaranteed to work, would you do it?
2) Would you look back when you are 44/45 with no sibling for your DS and regret not giving it a go when it was a viable option?
3) If it was free, would you do it?
4) Unexplained in/subfertility, like is said above, does not mean nothing is wrong and that IVF won't be able to help you along the process.
5) IVF isn't necessarily a nightmare for everyone.

BUT only you will know in your heart of hearts what to do for sure. I'm not pushing IVF and it's definitely not for everyone for a whole host of reasons. I always said to friends/family "IVF is not for me", but I guess I changed my mind. All the best. N

witchwithallthetrimmings Tue 28-Sep-10 10:08:04

I was roughly at your stage (ds almost 3, almost 40, 2+ years of ttc, all the tests done etc.) The consultant was tbh bullying us to go for IVF - his logic being that it would be the best chance for us to have a baby. I was really unhappy about this and decided to go for IUI instead, all set up and was due in for first drugs on first day of period AND IT NEVER CAME. now have lovely 20 month old dd! I think we needed to do something about it to take the stress off but IVF would have been just too too scary for me

Just to put the other side, I had IVF this year at the age of 38 after 4 years of ttc and completely unexplained fertility (apart from stressful jobs and DH probably drinking too much). All I wanted to say was I didn't find it too bad at all, in part because I had loads else going on (was doing an MSc and had coursework and exams at the same time!) so it wasn't the main focus of my life, I didn't have too many side effects, and I don't mind things like injecting myself at all. And it worked first time.

But I think the stakes weren't as high for me as for other people - I could see a happy life without children, although I'm very happy now to be able to have a child, it was only the first time, and I guess crucially I got it on the NHS. So disgustingly lucky all round I guess. And I know most people find it much more traumatic mentally and physically. I met people who were really sucked in to a horrible situation where they kept wanting one more try when it didn't work, whatever the cost - I can see how it might encourage that and was certainly scared that would happen to me, so there are lots of arguments for deciding against it. But just to reiterate CoconutCath's point that it isn't always a nightmare, particularly if you have other things going on which take your mind off it.

BagofHolly Tue 28-Sep-10 23:10:36

I'd like to echo what Attilathemeercat said. The depth of testing available on the NHS is utterly woeful - fertility isn't a priority area for the NHS, so sadly if you want to REALLY find out what's going on, you're probably going to have to go private. There are two NHS sites I know of who look at testing in more depth - Dr. Siobhan Quenby's clinic at Liverpool Women's Hospital, and Dr. Hassan Shehata via Epsom and St. Helier hospital. And even then the focus is largely preventing rpt mc, rather than unexplained infertility. As ATMC said, if it's 'unexplained' that just means you haven't had a proper diagnosis.

To add to the list of tests ATMC just posted, here are what you can reasonably expect at the clinics which specialise in repeated IVF failure or rpt MC. (Get comfy, it's long!)

Karyotyping for DH and you (tests for any genetic issues)
Sperm assays and investigations - including DNA fragmentation testing(anyone with more info. on this as I know v. little about this)

Uterine
Hysteroscopy, HSG etc. to check for scarring, fibroids, polyps etc
Thin lining, no triple stripe etc.
Doppler - to check blood flow in uterus

Insulin resistance (fasting glucose test)
Thyroid levels (TSH, T3, T4)
Anti Nuclear Antibodies
Anti thyroglobulin
Anti-thyroid antibodies
Full Blood count
ESR (Erythrocyte Sedimentation rate)
RA (Rheumatoid Arthritis)

BLOOD CLOTTING PANEL (Thrombophilia panel)

Serum Immunoglobulins (IgG, IgM and IgA)
Activated Protein C Resistance
Factor V Leiden genotype
Anti Phospholipid Antibodies
Lupus Anticoagulant
Anti Cardiolipin Antibodies
Plasma Free Protein S level
Factor II G20210A
Prothrombin Gene Mutation
Antithrombin III M
Fibrinogen level
APTT (Activited Partial Thromboplastin Time)
APTR

MTHFR (methylenetetrahydrofolate reductase) and connected with this is measurement of your homocysteine levels (The GP may not be able to do this one)

BACTERIAL

Mycoplasma,
Ureaplasma
Bacterial vaginosis
Chlamydia and any other bacterial infections
Varicella Zoster antibodies

Progesterone
Extra progesterone e.g. Gestone (injectible progesterone) may also be needed.
Get progesterone levels checked at the same time as any beta tests (or even 1 week after embryo transfer) to make sure you have adequate levels (especially if you have had a cycle where you have started bleeding before the end of the 2ww).

Immune testing (so called Chicago or Level 2 tests) - to be done by specialist consultant:-

Natural Killer Cells
Cytokines, (TH1, TH2)
Tnf-alpha
DQ Alpha
LAD


Pretty hefty, no?! My problem, it turned out, was Natural Killer cells going haywire, and this was sorted as I started IVF, although if I'd been a bit younger, we could have ttc 'naturally' for a bit, with my NK cells managed by steroids. I'd had enough by then though, and went straight for IVF, which worked first go. If we hadn't have got this sorted, the IVF itself would have been doomed to fail.

For those that are scared of IVF, it's no more scary than IUI in my opinion - similar levels of prodding and poking, but more drugs.
I was so fed up with everything, I was thrilled to get going with something that I could finally believe had a good chance of working, so it was a relief really! And it's only 3 weeks out of your life, max, compared with years of sadness.

Hope this helps someone. x

nouveaupauvre Wed 29-Sep-10 09:30:49

cripes - we havent even had attilathemeerkat's list of tests, let alone bagofholly's! thanks this has really helped clarify thinking. my gut feeling is that it's either my age, stress levels (work, moving house, loads of other stuff that has happened over time we've been trying) or something following from C-section required for ds that is my problem but that is completely unscientific -think we will look into possibility of more tests as a starting point.
thanks v much for all your responses, this has really helped us think more clearly about it all.

fedupttcnosuccess Wed 29-Sep-10 09:39:11

Nouveau: have your cycles been regular since your c section?

BagofHolly Wed 29-Sep-10 13:09:36

Secondary infertility, especially when the first child was conceived easily, is covered by Alan Beer's book "is my body baby friendly?" and is well worth a look.
Before you go down the path of IVF, IMO you may as well try and make sure it'll work by getting a load of other testing done - and that way you can also try naturally too whilst you're at it. Dr. Amin Gorgy from the Fertility and Gynaecology Academy is your man, and is about £150.

Personally I think stress is a red herring unless raised prolactin is causing ovulation failure.

londonlottie Wed 29-Sep-10 13:21:41

Message withdrawn

fedupttcnosuccess Wed 29-Sep-10 13:29:17

Llottie: how much did itcost you, where did you go and what were the waiting times? X

We decided not to go for IVF when we'd been told our infertility was unexplained and that there was no appropriate treatment. We got pregnant naturally but I found Dr Zita Wests Guide to getting pregnant (available on Amazon) really helpful in understanding what can be helpful. Actually I think it just reassured me that even subfertile people can conceive and perhaps that did the trick. We have two children now anyway

fedupttcnosuccess Wed 29-Sep-10 13:39:35

Whomovedmychocolate: I am in a similar predicament to you, in that we have unexplained infertility too, no dc at the mo. Congratulations on your dc. What worked for you in the end? Prognosis for us not good as I'm 40 now and he's 43: getting older every day!x

BagofHolly Wed 29-Sep-10 14:49:35

Fedupnosuccess, am on my phOne so scuse brevity but all of the success rates for each clinic are on the HFEA website. Lister and ARGC have the best and widest experience with older ladies and are also amongst the most successful. At ARGC the waiting time for an initial apt is about a month but if you can do a cancellation, can be much quicker. Once you're in the system things happen v quickly. It's about £8k a cycle all in unless you have complex issues.

In order to make an informed choice about whether it was 'worth' doing it, I found this link invaluable. It's off the hfea website and is a bit heavy at first glance but check out the graphs and you'll see how it works.

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