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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Anyone got to the bottom of unexplained infertility

18 replies

Strawberryshortcake28 · 03/04/2020 19:19

I have been TTC for over two years had all NHS tests and been diagnosed with unexplained infertility my IVF has been prosponed due to CV

Just wondering if anyone got further tests or went through treatment and discovered why they were infertile I'm still convinced there is something wrong with me I have extremely sore lower back most of the time but during my time of the month it's excruciating the first two days are extremely sore but as far as they can see through the scan I don't have endomitosis also break out in spots when I'm ovulating and during the time of the month

OP posts:
itwasalovelydreamwhileitlasted · 04/04/2020 06:47

It really depends on your age as that is the biggest deciding factor of all - if you are 37+ it's most likely age. Less than that it could be a range of things - in the end we went down the IVF route with genetic testing and turns out my egg quality is poor so that eventually explains ours x

SpyroC · 04/04/2020 08:52

The only way they can definitively say you do or don't have endo is through laparoscopy. Which is how mine got formally diagnosed. I had suspected it, I have lower back issues particularly around af and painful periods. I also have painful bowel movements when I'm on af. My skin has been terrible since coming off the pill too. I break out at ovulation and af. The good news is the ivf meds have actually calmed it down. The endo wasn't growing anywhere that would technically prevent pregnancy however, it was on my ovary which is likely why when I got to ivf almost a year later they found I have low AMH and it's looking like the quality is an issue too. As pp says it comes down to quality in my case too though I started trying when I was 29.

Strawberryshortcake28 · 04/04/2020 19:38

Started trying when I was 27 I turned 30 last week I have a regular cycle every 27 days get a positive ovulation test every 15 days and doctor confirmed I am ovulating I think your right potentially could be egg quality will I not know until I start my treatment or do you know if there is any other test I can do all NHS tests are normal so far

OP posts:
itwasalovelydreamwhileitlasted · 04/04/2020 21:33

@Strawberryshortcake28
Unfortunately NHS is limited in the tests it's prepared to provide - you'd have to pay privately for PGS testing with IVF but it's not 100% accurate x

Zest11 · 06/04/2020 12:01

Have a look into your thyroid levels. If the tsh is say above 3 and ft4 is low normal you could give a low dose of thyroxine a try xx

Dot457 · 06/04/2020 14:25

Hello @Strawberryshortcake28 I went private through Nuffield health and paid £45 for a blood test to test my AMH levels which is egg reserve, you could do this for piece of mind too? Hope you get sorted out xx

JeNeBaguetteRien · 06/04/2020 15:41

Endometriosis has not been ruled out for you. As well as possible issues with you has your partner been adequately tested?

When you say your doctor confirmed you are ovulating how was this confirmed? Were tests done on correct days if it was a progesterone level test? Were they repeated?

You need to not just accept 'normal' as an answer, if that's what you're doing, and look at actual results.
Also 'all NHS tests' can vary hugely by area. Some don't check for thyroid issues. In the UK the tolerance levels for thyroid issues are less stringent than other European countries.
Obviously at this time you won't be referred but use it to do some research, unexplained usually means the cause(s) hasn't yet been identified.

AliceAbsolum · 06/04/2020 18:15

Yes, AMH was so low IVF had a very tiny chance of working. "Unexplained" is often "NHS cant afford to find out".

Strawberryshortcake28 · 06/04/2020 18:45

Partner has been tested and sperm is fine yes blood tests were done on day 21 of cycle which confirmed ovulatin
Then done again at fertility clinic

I literally had my appointment to start IVF on NHS but was cancelled due to coronavirus I do have the money to go private but I just don't see the point as I'm literally at the top of the list in my area anyone know how I would go going about what tests were carried out at my doctors and NHS fertility clinic and what there exact results were can I request a report to help my research they did tell me at the time but I was in so much shock and overwhelmed of the situation

OP posts:
SpyroC · 06/04/2020 21:51

You can ask your gp to print out blood results and scan reports. I would definitely recommend doing this and keeping a record. "Normal" is not always what it seems.My clinic took copies of my print outs too. You might have to wait until things get back to normal with c19 though, sadly everything's on pause at the moment. X

JeNeBaguetteRien · 06/04/2020 22:20

Any tests done by my GP were available online on the patient access system.
When I had NHS IVF I paid £30 for a copy of my notes to give to the private clinic.
Sometimes results that are 'normal' are in fact borderline, or maybe okay in general but not ideal for TTC.

kikisparks · 07/04/2020 07:32

I was told I probably didn’t have endo as they didn’t see anything on the scan. They had me as unexplained. I pushed and eventually had a laparoscopy which confirmed severe endometriosis. Unfortunately they can’t do much about it, I could go on hormone meds but not whilst ttc, I could have an operation but my bowel could be pierced and I could have severe long term problems, or I could get pregnant, that might help (but 3.5 years TTC and cancelled ivf due to covid who knows if/when that will happen Sad).

Despite confirmed endometriosis because it’s not blocking anything half the medical professionals are saying I’m still unexplained the other half are saying it’s probably the endometriosis. They don’t know a lot about it unfortunately.

Have you had a hycosy to check your tubes are clear?

Under data protection law you can request your full medical notes including test results etc.

Iwouldbecomplex · 07/04/2020 08:05

I had all of the nhs tests and was told I was unexplained. I suggested endometriosis because my mum has it and was told I don't. They also said my husbands sperm was normal.

We went to a private clinic for a more in depth semen analysis and it showed he had very high antisperm antibodies (which the nhs never tested for). Then after 3 cycles of failed ICSI where the clinic insisted it was just my bad egg quality that was causing me to get hardly any eggs and have repeated implantation failure I went to see a new gynae who sent me for a laparoscopy. Which diagnosed me with stage 4 endometriosis and diffuse adenomyosis. I then also had a follow up MRI which showed the endo and adeno clearly. Turns out my ovaries are stuck down and that's why they couldn't see them on scans during ivf and why they struggle to get to them to retrieve eggs. Endo and adeno can also affect implantation.

So don't just take the NHS's diagnosis as final. Test for everything you possibly can. On top of the more thorough semen analysis, lap and MRI I also had the greek infection tests, karyotyping and full stage 1 immune tests. When the corona madness is over I will be having all of the stage 2 immune tests too so we have a full picture of the situation and can choose treatment accordingly. Good luck.

EL8888 · 07/04/2020 08:50

No, we have had NHS and private tests. Also a round of IVF but never got any clarity. The lazy answer would my age l suppose (started trying at 38 and now 40). But my AMH and FSH are both excellent

SpyroC · 07/04/2020 11:07

@kikisparks I have the same, could be endo but might not be. Very annoying! It seems to have affected my reserve and possibly quality too.

itwasalovelydreamwhileitlasted · 07/04/2020 17:47

@EL8888

Unfortunately age is the most significant factor - age 38-40 only 13% of eggs are expected to be genetically "normal" falling to 6% at 40-42

That's not to say you won't ever fall pregnant but it's going to take considerably longer to get that one good egg assuming no issues with your partner and all other conditions are "right" that month

EL8888 · 07/04/2020 18:16

@itwasalovelydreamwhileitlasted to be honest lm cynical about the whole thing, money has been spent but no real answers obtained. Fertility just seems like a guessing game from what l can see e.g. my AMH is better than my friends 17 year old daughters. It may well be the quality of my eggs but who knows, l managed to get x5 5 day blastocysts at the end of 2019. I was hoping to quit at the end of the year but thanks to IVF being on hold that looks unlikely

Chicasimona · 29/05/2020 16:52

Hi, we are at the stage when all Nhs tests been done,all good, 6 months on Letrozole no luck. After reading online I'm suspecting that my luteal phase is too short (10days) maybe it's stupid but I'm just desperate for answers. I have also heard that it is common to have endo without any symptoms which is scary.
Has anyone tried Iui?

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