Unexplained infertility

[eurochick]

This is the official diagnosis we got today. I was expecting it having looked at the screens during tests, etc. My blood tests fine, tubes clear, no problems visible on TV ultrasound, hubby's SA's both ok. But it is a strange "diagnosis". On the one hand, we should be happy that there is nothing obviously broken! On the other hand it just makes it all the more frustrating that it hasn't happened.

I'm not sure what I am expecting from this thread (although happy outcomes from other "unexplained" ladies would be nice ) but I just wanted to post as I'm trying to take it in. Next stop IVF, apparently.

Hi eurochick, hope you're ok, I know how frustrating an unexplained diagnosis as it was the initial diagnosis we were given. Have you had a lap done? It wasn't until I had one of these that the doctor discovered I had endometriosis. It hadn't shown on any scans or tests previously so was a bit of a shock. It might be worth asking if you can have one done if you havent had one previously. Best of luck

Hi Eurochick, just to say i know how you feel, its a very frustrating diagnosis but good that there's no reason why you can't conceive. I've got the same diagnosis. Have you been charting your temperature and if so what pattern does it look like? I've been recommended to read a book called 'the infertility cure' by randine lewis. its got these diagnostic checklists that links everything together; things to do with your periods (e.g. clots or pain) with emotional patterns (irritability, anger, depression), sleep patterns, digestive patterns, susceptability to other illnesses etc, its really interesting. Based on what patterns you have and what your bbt charts look like its makes recommendations (e.g. taking agnus castus, accpuncture points you can massage etc - loads of different recommendations that you are encouraged to do as many as possible to pull everything in the same direction to address any imbalances). The idea is the smoother your bbt chart becomes and the more any other symptoms subside the closer you become to removing any imbalances to conceiving. I do think there's something in very minor imbalances that don't show up in doctors tests but still just need tweaking for the whole system to fall into balance. What do you think?

regarding bbt pattern, does your temp go straight up at ov and back down at period or does it take a few days to go up or down?

Thanks for your posts.

helen I had a lap about 15 years ago and have no desire for another. I had a bad reaction to the anaesthetic (my first ever general) and came round screaming, then settled, then had a delayed allergic reaction (skin rash followed by passing out) a few days later. And I was still having trouble with the supposedly dissolvable stitches 18 months afterwards. Now, 15 years on, my belly button still looks like it was stitched up by the surgeon's 3 year old practising needlepoint for the first time. So I really don't want to go back there! I don't have most of the symptoms of endo anyway.

Carebear yes I have been charting for quite a while now. My temperature takes a few days to go up and down (but less time than it used to take). However, my acupuncturist describes my BBT charts as "textbook" now. Why did you ask about that? I'm also having acu and have been for about 6 months. And I am on agnus castus under the advice of my acupuncturist (also a herbalist).

The book sounds interesting. I might pick it up. I am willing to try any woo if it means they don't have to pump me full of drugs and stick a big needle through the side of my fanjo!

Thanks again for posting. I'm just a little shellshocked. I started TTC thinking I had PCOS (diagnosed years ago) only to find out that it seems to have disappeared but now there is some other mysterious reason that modern medicine cannot detect for us not conceiving!

Hi eurochick,
Just v quickly as I didn't want to read and run, I had an "unexplained" diagnosis 3 years ago. My DD was 10wks old yesterday, we had IUI.
Second the long post above about trying everything and anything :) and completely understand the frustration you must be feeling. And, unless you're a lot stronger than me, the devastation you feel at points.
Just here to offer some support. I'll try and read through posts later on after I've fed the bairn (there have been points in my life where I truly believed I would never say that phrase) but in the meantime, if you want to pm me at any time for sympathy/empathy/a fucking good whinge, then please do. Thinking of you, I'll try to catch up xx

Thanks and congratulations!

Euro i know how you feel - i was told i prob had PCOS, then not, then told i had a blocked tube, then told not, then told prob endo, then told not.....But if your charts have improved you might be closer than you think. i guess that book is one such 'textbook', i'm sure there are lots, but that one is very easy to read with diagrams of charts and what they mean etc. Some of the recommendations for my patterns are things i wouldn't have thought of, like having lots of warm foot soaks and eating lots of hot warming foods, hot water bottles etc. Anyway, it would be worth a look. Best of luck. x

I'm ordering some other stuff on amazon tomorrow so I might just fit it in my basket, thanks.

Hi eurochick,

Am v sorry you've been told this. However, unexplained subfertility is actually no diagnosis at all; this means that they have failed to find out what is wrong. Often it is a diagnosis given to patients simply because not enough tests have been done.

You mention a SA; was this test ever repeated?. Any test done over six months ago should be discounted; you both need up to date test results. One good semen analysis for instance is in no way a clear demonstration of there not being a possible male factor issue and I would put a £5 note on it that you as a couple have not been adequately investigated.

I can also put up a list of tests that are often missed out if you'd like.

I would in any event seek a second opinion.

Hi Attila. Yes, I understand that is what it means (which is why "diagnosis" is in inverted commas in my OP). That is what is so frustrating. The tests conducted as standard on the NHS are fairly limited. It's interesting to occasionally stumble across a US forum and read about the far more extensive investigations that are carried out there.

My husbnd has had 2 SAs, both in the past six months, and one of those was in the last month, so that is up to date.

I am accepting the NHS referral for IVF but in the meantime am going to see a private gynae for immunology testing, among other things. I don't see the point of having the IVF if, for example, my body is rejecting embryos for some reason (which is quite possible as I am producing eggs and my husband is producting good swimmers). By all means post your test list. I'd be interested to see what is on it.

Thanks, annie. I'm already doing most of that. I was pretty healthy anyway but have tried to up the fruit and veg a bit and keep up my exercise levels. I cut down on drinking before ttc when I was trying to lose a few pounds for my wedding and since ttc am down to one decaff a day instead of my beloved uber-strong coffee.

My husband's SAs were fine and we have tried every day, every other day and a bunch of different combinations all to no avail.

I am glad your story ended happily!

Yes, one friend, nine months PG with her second, conceived in 6 weeks did suggest relaxing last week. It rare that I want to hurt a pregnant woman but....

So sorry to hear this eurochick. Nothing to suggest except .

Hope you are ok. It's not fair, is it?

no advice, just wanted to say i'm sorry you've had this 'diagnosis'

Thanks all. I think the NHS leaves quite a lot of women with this "diagnosis" simply because the standard tests are limited.

I just saw my acupuncturist and she was as surprised as I was about the referral straight to IVF with no attempt at Clomid, IUI, etc.

It's just a bit of an odd situation to be referred for some pretty hardcore treatment when nothing is wrong. It's like going to the dr's with a stomach ache, tests all coming up clear and them removing your appendix just in case. But I am not complaining about the referral - so many people have to fight hard for that. I guess my nonplussed feeling comes from not knowing WHY. I always want to understand why in all aspects of my life so I find being no reason at the end of the NHS line for our failure to conceive difficult.

That was a bit of a stream of a consciousness....

Eurochick - sorry to hear that the NHS are being useless. Do you have all your test results (the actual numbers) so that you can look to see whether they are on the limits? From what I have understood the NHS have much larger ranges than what a private consultant would want. (For example, I think the TSH can be between 0.5 and 3 to be 'normal' in the NHS but I think for fertility it wants to be between 1 and 2.)

In a good way, at least the NHS are going down the IVF route now rather than trying things they don't think will work or making you keep on trying because they think you have no issues and it will happen eventually.

Sorry - I don't have a good news story for you.

The most common tests that tend to be omitted are:-

Adequate x-rays of the uterus which may show abnormalities not otherwise seen at laparoscopy.

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

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

Testing the sperm in special media such as swim up tests and velocity testing. However, when they are done, they often 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 are no sign of polycystic ovaries.

Thanks Attila.

I've had HSG and TV ultrasound as part of the standard package. The more subtle semen analyses have not been done but we might look into that if immunology testing leads nowhere.

LIG I completely agree with that. I've had that experience with iron levels. Went to the GP feeling tired all the time. Standard tests all normal. Next batch of tests also normal. They were about to send me for a third bactch of tests (including a chest xray to check for TB!) when a young locum said "your iron stores are at the low end of normal. Why not try some iron tablets while you wait for the xray". I never needed it. I fely 10 times better in a couple of weeks, after being persistently tired for about 3 years! But according to the NHS my iron levels were normal so that wasn't the problem.

Maybe my private gynae will pick something up.

Hi, glad that you can get NHS funding, though shame not offered IUI first - as can have several cycles of that before go to IVF (all counted under same funding, if have 1 IVF cycle funded it includes IUI). I say that because we had to go straight to ICSI due to male infertility but as only one NHS cycle I found there were things I would want to have done differently etc if I had had IUI first. Or thought about more before IVF - but maybe that is just me.

I agree with NSH testing, as we also did Immune testing (now pregnant with Immune treatment) and our consultant (George Nduwke) said my TSH was too high at over 2 (about 2.5) and wanted me on levothyroxine before IVF. I am on it through pregnancy too, to prevent miscarriage. But NHS say levels below 4 are fine - Immunology dr's disagree. We found several Immune issues for me (thrombophilia, raised NK levels etc) that needed medication. Some Dr's - like Dr Gorgy will prescribe Immune treatments alongside NHS IVF cycles (at a cost, obviously) although if you have issues like Factor V Leiden you may find your NHS will pick up the bill for ones they accept (but don't test for until you have 3 miscarriages, frustratingly!) I just wished we'd done Immune testing before ICSI as I already have some autoimmune isses (asthma, coeliac etc).

Good luck.