unexplained infertility, i cannot get my head around this!!!

[jspree31201]

Hi all,

New to MumsNet so bear with me. I am not sure if I am posting for advise or just need somewhere to vent. We have just been given a diagnosis of unexplained infertility and I am not sure how I am taking this news. I feel that if there was an actual clinical reasoning behind why me and my husband can't conceive then I would have accepted this better? Does that sound strange? My husband is as happy as 'larry' there's nothing wrong and can't understand why I have been devastated by this news.

All tests came back normal, no blockages, ovulating fine, SA was correct. My husband is 30 and I am 28. My BMI is high and they won't refer me for IVF on the NHS until I bring it under 30 (currently 34) which will be hard but I want to do it.

We have been TTC for 3 years and I have been pretty relaxed about it until now. I always took the attitude of it will happen when it will happen. But now I am so stressed and sad I have 4months to lose the weight now or I will have to do the work up all over again. But the upset this is causing me is really not going to help my weight loss, I tend to get a bit lazy and eat a lot when I am upset so I now fear this will affect it which is stressing me out even more!

I suppose I just needed to vent a bit and get it all out as Hubby is not really understanding me at the moment.

Any one been in a similar situation that can help suggest ways to manage this? I think I am going mad because I know I should be happy that there is nothing clinically wrong, there are so many people out there with actual diagnosis's that may never conceive, so am I being selfish?

Jo x

Also had the unexplained diagnosis- I felt rather similarly to you!

While chatting with the consultant about it, he explained that it really didn't matter what the problem was, ivf was the answer. The tests you've had up until now have ruled out anything show stopping or anything easily "fixable". So the next step is ivf :) personally, after I'd got over the disappointment of a lack of diagnosis and accepted that we did need ivf, it was a bit of a relief to be doing something positive rather than just endless rounds of tests.

During our first round of ivf we did end up with a diagnosis (mf immunological infertility).

Good luck op;)

Hi @jspree31201, saw your post and had to comment as I know how the horrendous label of "unexplained" feels. I've very sorry it's utterly shit. I've had a bad experience with the NHS but bare in mind that unexplained means they have failed to find a reason but there is a reason. Regarding your weight I don't agree with many of the posts above. Of course a healthy weight is better for your overall health but couldn't every single one of us improve our general health and wellbeing by drinking less, quitting smoking, drinking more water or having less stress? Plenty of overweight and obese women get pregnant straight away as do underweight women. During my infertility journey 2 friends with eating disorders and sporadic periods got pregnant very quickly. If you browse the infertility forums you'll quickly see a pattern of women drastically altering their diet and lifestyle including taking a cocktail of vitamins for months or years until eventually giving up as the stress and depriving yourself of life's small pleasures never seems to end in that BFP. Being overweight is linked to infertility due to hormone imbalances which affect ovulation, and since you have regular cycles and ovulation then I really don't think your weight is the root cause of your infertility. Doctors don't refer overweight people for many further tests not related to fertility because the local government stipulate that so their hands are tied. Saying all that you are young and are able to get funded IVF so the weight loss is a goal for you to focus on and work towards whilst taking your mind off this sodding awful infertility. The sooner you start the sooner your can rule the weight issue out and keep searching for answers. Good luck!

aurora

The weight aspect is complex. There is a lot more to it than just FSH/LH imbalances

Being overweight can be an indicator of thyroid issues, it can also be a cause of insulin issues, it can be a cause or indicator of inflammation and immune issues
The growing body of evidence around weight and gut health also has implications for fertility and immunity

There is no downside to losing the weight, and there are a number of potential benefits
Not least that if OP needs to have IVF, it will be a lot safer at a healthy weight.
OHSS has a clear link to weight, and IVF rounds which result in OHSS have lower success rates and higher rates of complications in pregnancy when it is successful which is one of the reasons clinics want patients within a healthy weight range

I was thr same as you. Unexplained infertility

Ttc for 5yrs with dh. Was on nhs ivf list when sadly he died

Year later met a lovely man who had 3 kids in their 20’s but willing to ttc

As he had kids I lost my nhs go

Another 4yrs ttc and after 5 private ivf and £27k I finally became preg for the first time and dd is 9mths today

In the nicest possible way you are young and you can have nhs ivf and hopefully will work without you paying thousands like I had to

So yes lose weight. You can do it.

Hi jo
I’m sorry to hear of your struggles and that you’re going through this. I’m also really sorry to see you’ve been given the usual unhelpful and frankly wrong advice about the cause of your infertility. Unfortunately your thread is infertility bingo-tastic in that it’s full of the cliched advice/platitudes everyone with infertility has heard 1000 times already and which is unhelpful at best and hurtful at worst. Relax-tick, lose weight-tick, take up some faddy diet and cut out big food groups-tick etc etc.

I agree with sycamore. I always thought it would be better to have a cause for my infertility because then I could think that x is the cause and by extension the solutions are y and z.

In some ways I was almost relieved when we were told we had male factor as I naively thought it meant the problem could be easily solved with ICSi. Unfortunately further tests found that we also have female factor in the form of low ovarian reserve for which there is no way of overcoming. IVF with big doses of drugs resulted in poor response and few eggs and we had 5 unsuccessful ICSI cycles. In hindsight I think the unexplained diagnosis is preferable to poor ovarian reserve.

Multiple posters have given you a hard time about your weight, which you’re already aware is above ideal and are trying to work on. I don’t know why you’re being categorically told by posters here that if you lose weight you’ll solve your infertility. I would assume your consultant who was s medically qualified and has access to your medical record and investigation results would have told you if they thought your weight was the cause of the problem rather than saying you’re unexplained. I’m not suggesting that you shouldn’t continue trying to lose weight, just that no one posting here can tell you that if you do get your bmi in the normal range whether it’ll make any difference to your infertility.

jspree Sorry you're going through this. Unexplained infertility is a hard thing to take in, you're perfectly normal for finding it difficult. Everyone deals with things differently, and your husband may well be relieved to know that his swimmers are ok (my partner certainly was), as for men there is still a big stigma about that.

Counselling can really help, but also give yourself a bit of a chance to get used to the idea. I find I sometimes have to process things a bit before I get myself a bit more into an "ok, this is the next step - let's do it" kind of mindset.

Re losing weight, totally agree with others who suggested joining a group - there is heaps of evidence that taking up the challenge with others helps, and what a perfect time of year to do that as well.

Have you listened to The Fertility Podcast? I have found that really helpful in reminding me I'm not alone and normalising this whole crappy situation - it's rubbish, but it is something loads of people are going through too.

I hope you soon feel a bit calmer about the whole thing and can harness some positive energy to help you lose weight and be as healthy as possible

I'm now a firm believer in there being no such thing as 'unexplainable infertility', just that the correct tests haven't been carried out

This is what I came on here to say but Sparechange said it much better.

Our reason for being referred for IVF was due to male factor issues but the process found that I have egg quality issues too which any standard test wouldn’t have shown.

I also had to lose some weight for the NHS round (BMI 31 to 30 over 7 weeks) and I didn’t do it in the most healthy way so probably deprived myself of essential nutrients in the process. My BMI was 31 for the private rounds but I was eating much better, looking after myself and in a much better place mentally.

A huge number of infertility cases are unexplained. I can't remember the number but it's a huge percentage. So you're not alone.

It doesn't mean there isn't a reason (there must be 'a reason'), it's just that medical investigations available to you haven't been able to explain it.

Your weight is likely to be a key factor. It may or may not be 'the' reason. It's probably 'a reason' based on statistics. Hence why NHS won't refer for IVF because evidence is it significantly reduces success rates. Have you tried a support network (Slimming world, weight watchers, etc) to try to help you with the weight loss?

Please ignore the comment that stress causes infertility. There is no research to support this.

Most ivf cases are unexplained and it could mean many things. A lot of the time, however, it means everything is normal hence why people undergoing ivf for infertility tend to get pregnant ‘when they stop trying’. Suggest you lose the weight and keep trying.

people undergoing ivf for infertility tend to get pregnant ‘when they stop trying’

Oh great. Yet more infertility bullshit bingo

raving your post is both factually incorrect and really quite offensive

@sparechange - it’s the truth. A lot of unexplained infertility is caused by people rushing to IVF when it’s not needed. You should go to the fertility show and attend a few lectures from trained professionals.

We were diagnosed as unexplained. After we started IVF the clinic tested DH sperm and found low motility in his sample. Then when it came to putting the embryo back, on our 2nd round, the doctor couldn’t get the right angle for my cervix and I had to be tilted to a weired position. I also only produced 1 egg from my left ovary in each round, with the egg being duff each time. My left ovary was described as shrivelled and much smaller than it should be.

This was AFTER they had supposedly found nothing wrong. So hang in there, loose some weight and get your DH to do whatever he needs to improve sperm quality. Quit drinking, excercise and so on. Do this together, as IVF was nothing compared to the rollercoaster having a child becomes! You’ll need each other for support the whole way.

@ravingroo are you talking about people paying privately, or NHS funded ivf?

Because NHS referrals take years and years (minimum 2-3), often with multiple investigations and treatments where possible in the mean time.
The NICE guidelines are very clear that if you haven't conceived naturally within a certain time period (which changes as your age goes up), then you are statistically less likely to conceive naturally and should be referred for investigations (and potentially ultimately IVF).

I couldn't comment in private IVF treatments as I don't know the stats on the average time it takes people from first attempt to IVF treatment, and what process led to the label of unexplained fertility in the meantime.
I've never heard of anyone describe their own fertility as unexplained in the absence of investigations suggesting no detectible medical aetiology, and these investigations take time. So I'd be curious to know where the argument comes from that people's rush to have IVF is meaning their fertility never gets explained?

raving
Your post makes no sense

Unexplained infertility isn't 'caused' by anything anyone does. What a totally ridiculous statement.

There. Is. No. Such. Thing. As unexplained infertility. Just doctors who haven't done enough tests to be able to give you the explanation

And as for your patronising comment of needing to go to a trade show to be sold to by clinics?!

I've had 11 fresh and frozen rounds of IVF at 5 different clinics. I've seen fertility experts, genetic counsellors, reoccurrent miscarriage specialist and urologists.

And in the end it took a immunology specialist to do the right test and diagnose the issue with my immune system that was preventing me from carrying a healthy pregnancy. A perfectly simple explanation but one that other doctors didn't find.

But of course, I should have 'just stopped trying' and it would have happened

When you get a diagnosis of unexplained infertility it should be good news - and it is! However it also means that there’s no ‘help’ to sort out the problem.
Try and think positively. The fact that medically there’s no problem means that it should happen for you.
New year is a great time for a new start. There’s loads of healthy things in the supermarkets to tempt you rather than relying on the usual snacks and treats! I found going for a walk when I’m stressed helped me loose weight. It was also a time for me to think through my issues without the distraction of home life. What would help you? An exercise class? A walk? Joining a weight loss group?
Make today the day you turn it around.
Good luck. Keep us posted on your weight loss journey and your journey to becoming a Mum.

academic.oup.com/humrep/article/26/2/360/595834

www.glowm.com/section_view/heading/Unexplained%20Infertility/item/323

I’m talking about true unexplained infertility not unexplained infertility that was explained by further testing. For unexplained - 60-80 per cent of couples have ‘spontaneous’ pregnancies.

That article is 10 years old

Half the tests and techniques available today weren't around 10 years ago. That article is completely meaningless and irrelevant

And yes sparechange there is such a thing as truly unexplained infertility. I’m sorry your experiences don’t let you consider an alternative point of view.

The research behind bmi and fertility is older (and actually was age based not bmi based), but ivf clinics still use it to inform ivf eligibility. But Then again I found that out at a fertility show after talking to a fertility expert but what do I know.

people undergoing ivf for infertility tend to get pregnant ‘when they stop trying’

No they don’t. It’s just that the ones this happens for go around broadcasting this. The people who this doesn’t happen to don’t go around broadcasting that because it’s not such a good story. This is one of the reasons people have a totally skewed idea about how common it is to “just get pregnant naturally after having stopped trying”.

Unexplained infertility isn't 'caused' by anything anyone does. What a totally ridiculous statement.

This. It’s unexplained because no cause has been found. By definition if a cause has been found, it’s not unexplained.

There. Is. No. Such. Thing. As unexplained infertility. Just doctors who haven't done enough tests to be able to give you the explanation
I sort of agree with this. It might however be that sometimes the test doesn’t exist (because it hasn’t been invented yet) as medical science cannot yet explain everything. Of course if more tests are done then you’re more likely to find a cause, but you’re not going to find a cause if the appropriate test doesn’t yet exist.

I disagree about unexplained infertility doesn’t exists

I had countless tests - examinations even ops and all showed fine

Dh and df both had fab sperm. I was the problem

I have /has unexplained infertility

I was told that in theory I should get preg (esp the amount of sex I was having lol) in time

Didn’t get preg once in 10yrs ttc and in that time had 4 failed ivf

Some docs say that if not preg in think 2yrs and young fit and healthy that it’s then unexplained

But usually they haven’t had any tests