I am angry: After 5+years of trying,... - Fertility Network UK

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I am angry

Lily4yrttc profile image
14 Replies

After 5+years of trying, 3 ECs, 5 transfers and more needles than I recall, our unexplained infertility has been a bit more explained by a DNA fragmentation test on my partners sperm. The results show very high levels of damage and warrant further investigation - and I hope treatment.

I’m weeks away from my 40th birthday and know our chances are slim for that alone.

I’m so angry at the system because all this time everything and everyone has been focused on treating me. I’ve asked and asked for more tests for him to be sure we were covering all basis. The original sperm test we had, we were told results were satisfactory. A new doctor has looked at those results and says they are under and would have warranted further tests, or at the least a repeat test.

Even when I took it on myself to get the DNA fragmentation test arranged I really struggled to get it and trying to organise it brought me to tears a few times as the bureaucracy is astounding.

We’ve spent thousands and wasted that money when the DNA test is just a few hundred.

We have a plan now for our next step but I’m just so angry at the system for being 100% assumptive that the woman must be the problem.

Ladies if you’re unexplained infertile, don’t let the system waste your time and money. Make sure you push for tests on your partner too.

Does anyone have a similar experience and what was the tests and treatment for your male partners like?

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Lily4yrttc profile image
Lily4yrttc
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14 Replies
Running79 profile image
Running79

Oh no I really really feel for you and know what you mean about wasted money!!

I commented on another post this morning where a lady said they have unexplained fertility.

I said to our consultant I don’t believe anything is unexplained, you just haven’t found it and she agreed!! I hate to say that we’ve found unless you have a glaringly obvious problem, that literally slaps them in the face like a wet fish, they are perfectly happy to do basic tests and crack in with IVF, instead of actually taking a step back and thinking logically - why are these people not pregnant as on initial investigation all is good!!

When we started IVF I was 37/38 and my husband bless him was mid 50’s.

They tested his sample whilst we were in with the consultant and it came back as ‘normal’

The consultant said that due to my husbands age we could consider a DNA fragmentation test to check, which was £500. So I said at the time we’ll can you use my husbands sample he’s just given? So she ran to the lab and luckily they hadn’t binned it, so they used that same sample for the test, which I though was good as it saved my husband sitting in the ‘seedy’ room as he called it!

I’m glad we had that test done as it showed my husbands morphology was slightly in the low side and we needed ICSI.

I think what I want to put across is, this is a test - be it ageist that we were offered straight away, regardless of the result of the normal one.

I’m a strong believer in the clinics putting all the cards on the table, explaining what each is and allowing you to choose!

If I had my time over, I would have paid the money to have a medicated monitored cycle, like I did before we commenced our donor round, it found that cyclogest wasn’t enough progesterone on its own so I needed to inject prontogest every other day

Had I been offered this at the time I would have taken it and paid the money for it. I whole heartily believe that’s why our first pregnancy failed

I’m assuming your husband is a similar age to you, but if two consultants have hit different opinions on your husband initial results, I’d be putting in a complaint and wanting answers!!

Zebedee1971 profile image
Zebedee1971

Not had that experience - we went to London women's clinic and both got basic tests done, then our miscarriage consultant sent my partner for a comet test for dna fragmentation... We debated even doing it because his previous results came back really good. I was lucky, he's fine, it's just me that's faulty!! Only thing I would say is that when it comes to treatment, there's not too much they can do. They'll tell your partner to eat well, don't drink or smoke etc. But also they'll probably recommend he starts taking impryl, which is a really good fertility vitamin (like pregnacare but for men I guess would be nearest comparison). For your next sycle they'll also probably do IMSI if they haven't already. That way you know the good ones are getting in. When we were further along the line we also were close to being referred to a urologist (I think), possibly doctor Ramsey in London???? I can't quite remember but there's a really good doctor in London who specialises in the male side, can sometimes identify issues like an underlying infection etc. I can't quite remember, but worth asking. I think it's urology. We never had to go down that route but it was on the list to do next!

I'm really sorry you've had this experience, from what I've read it is very common for women to bear the brunt of the tests and examinations and for the men to only be looked at later. When I think of how many tests I've had done (the hycosy was horrible!) and compare it to my other half... He got off lightly! But then I guess there's only a couple of things that can be wrong with men but with women it could be so many other things. It's a shame they didn't rule him out sooner as it could have saved you a lot of heartbreak... And money. This journey really does suck a lot

Zebedee1971 profile image
Zebedee1971 in reply toZebedee1971

Yep, is doctor ramsey.jonathanramsay.co.uk/

I've not used personally but I have heard good things, so hopefully not against forum rules!

Running79 profile image
Running79 in reply toZebedee1971

Can’t disagree with your comments - the only real check they can’t go is tell you if your eggs are actually any good or not!! Unless I’ve missed that test somewhere along the line

Orangetanolive profile image
Orangetanolive

I hear you.

I am generally frustrated by the fact that it is us who do the research and ask around here (huge thanks to all you strong ladies) and bring it up rather than the doctor who suggests...let alone persuading only to hear that we made a progress cos he suggested it. I'm like you were the one who said you dont think it is a deal breaker...but if we want we can test. Still there is not strong evidence....

We did further tests after getting bad results from dna frag. for which you can have a treatment but all those came out fine. So basically in our case it came down to age diet etc. For that we did IMSI. It has its own risks (it can damage eggs and lower the fertilization) which i got to learn only after we did. Damaging egg is the same with icsi I suppose.. ? Without imsi just ivf we always had all fertilized and we saw a big drop in fertilization with imsi. But quality is more important... that I must agree...

Also you will see some other ladies post about improving both sperm and egg quality by taking supplements and changing diets/lifestyle.

There is not much progress in knowledge in this infertility science. That is also the problem.... maybe it is just a matter of a luck.

Xx

🙌🏾 to your expression of anger and frustration

Marisa32 profile image
Marisa32

OMG, I'm so sorry! This drives me crazy too, so I always tell everyone to get DNA fragmentation test done before even undergoing IVF. Making sure sperm has no DNA frag issues is standard practice in all clinics I dealt with (3 different countries) but for some reason not so much in the UK. I just don't get it. Why would you put women thorough so much mentally, physically, and financially without doing some basic tests first on the sperm 😫.

Running79 profile image
Running79 in reply toMarisa32

You’ve hit the nail on the head!! Financial - this industry is a money making business first and foremost!!!

Very quick to send your bills out not very quick with anything else!!

I say this because our second round, we had two embryos frozen after being PGTA tested. Literally a couple of days after being told they were chromosomally abnormal and were being put in the bin, I got a £940 storage fee bill sent.

That’s the cost of yearly storage, they had been frozen 2 weeks only! Like my husband said it don’t matter to them if they’ve been frozen 5 minutes or the full year, that’s what your paying!! He’s incredibly sceptical of private medical care

Lily4yrttc profile image
Lily4yrttc

Thankyou all for your comments. I had seen Dr Ramsey recommended before in other posts here and my new consultant recommended so I went straight to book in with him as our next step.

I’ve found the email from PA with various ‘expect costs around...’ information more transparent than previous experience. Here’s hoping there’s a cause and easy treatment.

It’s only for this forum that I feel I have any information. ❤️❤️❤️

I’m not surprised you are angry. I was shocked at how sexist IVF treatment is especially as 50% of fertility issues are Male. I feel like something needs to be done about changing it and making more in-depth testing for males compulsory. The amount of women who must have been pumped full of drugs when they shouldn’t have been must be huge. As you say, the money implications are huge and for some people that could make all the difference of having a child or not.

Do you think if enough of us wrote to the HFEA about it, it could prompt change? Ive been thinking about doing this for a while.

Running79 profile image
Running79 in reply to

Interesting point you make about the HFEA!!

Remember they get paid, every time you start a cycle and every time you have a FET. As their ‘licence’ fee is £85 a time!! You think how much money they are making!

I’m not sure if we complained to them they would actually do anything, the reason I say that is I recently read an article about the previous president of the HFEA.

She was saying about clinics selling ‘add on’s’ like embryo glues and scratches, charging a lot of money for these yet there was no evidence that they worked.

From memory there was mention of streamlining stuff and the costs, but I think something had to be passed in parliament before they could go anything.

So to me although they are the regulator it doesn’t appear that they actually have any baring on how clinics operate

I hope that makes sense! I wish I could find that article as it was an interesting read

Running79 profile image
Running79 in reply to

Found it

dailymail.co.uk/news/articl...

Lily4yrttc profile image
Lily4yrttc

I do feel like I want to do something to make at least have other women informed at the start of their journeys. Is it not utter institutionalist sexism?

Owengle123 profile image
Owengle123

Not had experience of this but equally frustrated by our journey for different reasons. We’re limited with our choice of clinic where we are, so to be told 10 years ago (early 30’s) that only people having chemo freeze their eggs and then have two failed cycles and told my eggs are basically past it and to try donor is a real kick in the teeth.

I agree infertility should be more widely discussed so people are aware of how hard it is when you get older and also that not all problems are female related.

Best of luck with whatever is next for you xx

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