# "Unexplained"



## jq (Nov 14, 2006)

Hello,

I just read Bernie's reply about unexplained IF and just wanted to say that I know how hard that can be. I too was "unexplained" untill fibroids appeared and were blamed. The consultant focused on them and did not care to discuss that as they had not been there from the outset of my IF, there must have been other issues too. It was as though he was pleased to find the fibroids as they gave him something to do and say!

I wonder if "unexplained" is one of the hardest diagnoses for we patients to come to terms with as it can make us hope for too long? 

Doctors seem to find it hard to accept as well and so cast around for reasons, such as blaming the patient for  "poor response"

I was so frustrated when told "There is no reason for your miscarriages and IF issues." I am glad I responded by saying "There must be a reason, it's just that medical science can't identify it yet." The consultant looked horrified and offended. ("God" knows best!) Standing up to this sort of nonesense was part of moving on for me!

I hope that as more and more can be explained, fewer people will go through the particular variety of painful doubt, uncertianty and false hope that Bernie and I have shared.

Here's to being inexplicable and moving on anyway!

Jq xxx


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## emmag (Mar 11, 2007)

I'm unexplained too. I've often thought that I'd loved to have had a "proper" diagnosis, that it would have helped me to move on - I wouldn't have gone through 5 years of hope and drugs and IVF and stuff. However, if I had been given a diagnosis, it would have just led to 5 years of different and equally horrible problems.

I think the worst thing about being unexplained is that you can keep on plugging away for ever, and it *_might_* happen any month. It prolongs the pain and the hope indefinately - you have to draw the line and end things yourself. That's harsh.


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## Myownangel (Aug 24, 2005)

Good for you jq for standing up to the consultant. We don't have to sit back and swallow it all. The further I've gone along this IVF journey the more I realise that they just don't know an awful lot - and they don't like to admit it. It doesn't suit their image. In our case we did have two natural conceptions . Guess what the consultants said when we lost them - no explanation. Even Grace at 21 weeks - they could not give me a reason. Great! Grace had a severely underdeveloped brain - but they couldn't tell me why. She had perfect chromosomes and the best they could come up with is - wait for it - the chances of it happening in another pg is anywhere between one in four to one in a million. Hmmm that's really useful guys! Another example of the uselessness of statistics. I could go on about this... but I'll control myself ;-)
But you and emmag are right - it does prolong the hope and pain cycle. I mean, when I got pg the first time naturally I thought "Well that's it - it's all going to be ok now" How wrong I was!
Bernie xxx


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## irisheyes (Feb 2, 2005)

I, too an unexplained. i felt really frustrated with this as in a way i was hoping they would find a problem and then they could fix it.Silly me!

I rem going for my laperoscopy as they had found a cyst on my right ovary. when i came round and spoke to the consultant he said there was then no sign of the cyst. i must have looked disappointed as he said" well really thats good news "- Not to bloody me it wasnt.

Sometimes I dont think the medical profession dont do as much to research this side of infertility.They would not give me extra drugs to help as they said everything looked ok- I WANTED THE DRUGS as i thought these would help improve my chances.

I think deep down when unexplained you still secretly think you might get pg. I know i do. My af was 3 days late this month and even though I knew i couldnt really be pg i was still hopeful


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## Joan (Oct 22, 2005)

Me too. i was unexplained for Ever. But now having the big Menopause label slapped on my papers. it doesnt help except for knowing that it _cant _happen.

i came off the pill when i was 24 with first husband and nothing ever happened but i didnt mind because i wasnt desperate. He remarried and had 3 kids bang bang bang. it was only around 36/37 that i thought to myself that it was a bit odd that i had never got pregnant - so many friends with kids and all but one of my single friends had had an abortion - sister included.

then when the right man came along it all came to a head, and i focussed on it month after month and have done ever since. my how time flies! had all the tests inconclusively. unexplained.

joan


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## Yamoona (Nov 7, 2005)

Guys I think anyone who is dealing with unexplained definitely suffers the most. The uncertainty must be punishing, I have nothing but admiration for all of you. Ours is explained and I have said all along that this has made a huge difference in not only how we deal with our IF but how others do too. We can tell them why and shut them up but you do not have that luxury and that is tough. It is so true that the experts just do not know enough, the same applies with endometriosis and other gyno problems. I guess women still continue to be a mystery!!


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## moggy3 (Jan 13, 2007)

We found it tough falling into the 'unexplained' category as well.

When we were going through all the tests and my lap as well I desperately wanted them to find a reason as to why we hadn't got pg, but when everything turned out to be fine it just seemed we were no further forward than when we had first started.

Even on our second ICSI we went for blasts so that we could get the 2 best embies, but I had to go in 1 day early as the embies had stopped dividing, if we had waited 1 more day we might not have had any embies left.

All I can take from that is maybe my egg quality just isn't very good   or that my eggs and my DHs sperm just aren't a good match. We had always thought that maybe the problem was his slightly erratic sperm & that they weren't reaching the egg-but I just console myself now that throughout the years we may have created numerous embryos naturally but they all 'died' within a few days and we could have many more goes at ICSI but the result would always be the same.

A few months ago I took matters into my own hands to get rid of all the uncertainty every month that I would undoubtedly have for a good few years yet-I have gone back to contraception, opted for the injection as it only has to be done every 3 months.
I just couldn't face every month from now on thinking 'am i pg' I need to know that Im definately not so that I can move on with my life or else it will be constantly on hold like it had been for about 7 years.

We all need some control in our lives and for me that was the first positive step


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## Pol (Mar 9, 2007)

Now that's really interesting ... I have to admit the idea of going back to contraception had crossed my mind, too (although it seems silly as it's so unlikely with DH's sperm count).

We weren't unexplained as such, what they didn't understand was why I responded quite poorly to treatment.  However it now turns out I've got an underactive thyroid (and have ahd for 12 years - misdiagnosed as ME, another of those wonderful 'we don't know and can't help you so lets call it ME and you might stop bothering us' verdicts - and sadly it worked, and I stopped complaining and got on with life, only to discover that I've got something that should with any luck be easily treatable and I don't have to put up with constant ill health after all! ... oh, and yes, the IVF was a complete waste of time and money as it turns out ...)

To get back to topic - it's the whole getting back in control thing... although right now I'd doing quite well at just 'forgetting' about my cycle and taking no notice of the whole thing ...

Joanna X


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## jq (Nov 14, 2006)

Hi, 
I
did not expect my post to result in so many replies. Thank you for sharing how tough it is to move on without a conclusive dignosis.

I guess that we are alll the stronger for learning to live with uncertiasnty

hugs for all,

Jq xxx


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## Mistletoe (Holly) (Jan 1, 2007)

It too is hard having "explained" infertility, with no explanation.

OK I have blocked tubes - but no one can explain why. I do not have an infection, there is no endo, not even externally abnormal looking tubes - they can't explain it! I have always looked after myself and have never put myself at risk.

My husband has no sperm - at all. He has maturation arrest at the level of spermatocytes on biopsy. No one knows why and can't explain it. No one can explain why he can father a child 12 years ago and now is completely infertile.

No one has any treatment options for his azoospermia. I have asked our "expert" consultant about hormone manipulation with clomid for him having read some papers showing some success (OK success in scores much better than my husband's score) but he did not even know anything about this in men.
Also he told us that they could do IVF with spermatocytes, but the IVF unit said this was illegal in the UK and is only allowed in research.

The experts don't seem to know much, but then medical science has only been advancing in the last 100 years - a blink of an eye in the history of humanity.

It is still very hard to accept that our only options are DIVF, adoption or childlessness.


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## jq (Nov 14, 2006)

Hi Hazel,

Your post adds to the catalogue of all the IF that remains unexplained. I am so sorry that so many of us are left in this position. 

LoL

Jq xxx


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