ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

@Gardenlady543 ignore my comment on endometritis, was getting confused with endometriosis!! mega confused but makes more sense now. Is this treatable with the right antibiotics :(

@ER12

Endometritis- Could this be a separate issue that I should explore for fertility? Is there even any treatment for endometritis?
Endometritis is inflammation due to infection, there are types of bacteria associated with the condition such as strep and ureaplasma that you have. If you eradicate this then hopefully the inflammation would go with the infection.

There is a test for endometritis, it’s a biopsy to look for CD138, but whether you need to do that is debatable at this point. A lot of people don’t do this since microbiome testing seems to detect the infections that can then be treated.

Endometritis is associated with Ashermans syndrome that tends to cause a thin lining and light and painful periods. It’s where adhesions and scarring form in the uterus. Your hycosy should have hopefully ruled this out but in some cases the adhesions are very fine and people are diagnosed on a hysteroscopy, at this point you don’t need to jump to that though.

Do you know if she managed to get rid of ureaplasma via antibitoics in the end?
She saw the clinic and they said they’d treat it if it was detected on the swab they did, it was and she was treated on a course of moxifloxacin. She was then swabbed again, I think they said if it came up again after antibiotics then it was likely she was colonised and it wouldn’t need further treatment.

If I manage to clear the bad bacteria from the vagina, what would be the rationale for doing the further EMMA ALICE tests you mention?
Well you may not want to do this, essentially the vaginal test is looking at the vaginal flora. The EMMA ALICE takes a biopsy of the endometrium and the menstrual fluid test would be the same tissue but as it comes out during menstruation. So these tests give a more accurate picture of what is going on in the uterus. But it’s expensive and if it involves a biopsy then it’s invasive.

You can test your partners semen with this test :Is this not a UK testing/company? Do you know how accurate they are in picking up similar bacteria from the vaginal microbiome?
This is a Greek company, I promise I am not a representative for this company but it seems like I mention it every other day! I’ve had quite a few of their tests. You pay for the test and a courier which I think is €60 extra. The kit comes out to you, once you have it you arrange the collection date on the website, get the sample on that date and the courier takes it to the lab. They use the same technology as the EMMA ALICE which involves looking for bacteria RNA and you’ll get a breakdown of what is found and if treatment might be required.

thank you so much @Gardenlady543 this has been really helpful and feel like I can make a bit more sense of the best next steps now.

Out of interest do you know where/who might be good to treat the wider bacteria that has been found?

@ER12 that's a difficult one, with the EMMA ALICE a fertility clinic is involved and the lab advise what antibiotic should be prescribed which people get either from their clinic or GP.

With the vaginal swab it would be difficult, you can take the result to your GP to see what they advise but they may not want to prescribe anything.

The Clare well clinic was only willing to prescribe for my friend if their swab picked up the ureaplasma.

There is a place called nova fertility that I heard of, someone I spoke to paid £150 for a consultation and their doctor prescribed steroids. So they may be able to interpret it and prescribe treatment.

I expect some of the reproductive immunologists who offer add ons would interpret and prescribe, but a consultation with them is probably going to be about £350.

@Gardenlady543 understood and thank you. I think I will press ahead with our own testing for my husband and take the results to Mr Ramsay and see if he will prescribe us both the antibiotics we need.

Unfortunately my GP was so condescending and rude when I even attempted to discuss the results and possible antibiotics with them.

@ER12 all good advice above and I just want to add that my partner - great health, non smoker, non drinker - had an infection leading to high sperm DNA damage was successfully treated by Jonathan Ramsay. (Still have a long way to go though in terms of carrying a pregnancy to term.) He had the SpermComet and a urine culture and was also checked for varicocele. It’s possible to have infections or even a varicocele and be asymptomatic. Good luck with whatever you decide!

@MyEasterEggs wow! That is so interesting and also frightening at the same time. I’ve lost count how many times people have told me to ‘relax’ and it will happen (some Gyno’s included) and to stop pushing for all these tests but I finally am starting to feel like my worries are being validated, which in a strange way is reducing my anxiety in itself even though we are discovering issues. Sometimes you just need to trust your gut.

do you mind me asking why you still have a long way to go in carrying a pregnancy to term? Is this microbiome linked?

how did you kickstart your tests with Dr Ramsay? Did you go for a consultation and he advised you what tests to do or did you do the tests yourself and take them to him?

many thanks in advance.

@ER12 I have a history of recurrent miscarriage but was treated for microbiome issues before my FET and am now on drugs for clotting, immunes and thyroid. Plus metformin for PCOS and estradiol and progesterone. Feels like a lot of responsibility at times!

I emailed Dr Ramsay’s PA and booked in. Partner went to appointment on his own, had a physical examination then I hopped on a call with them to chat our history through. We were in Edinburgh at the time so a long way for us both to go! He then sent my partner to TDL for the tests and he was home same day. Dr Ramsay then prescribed treatment for BV which showed up in his urine sample so we both had a course of antibiotics since my levels of inflammation were high and I’ve had BV before.

I used to get regular UTIs but haven’t had once since I was treated earlier this year so I rate the microbiome testing and treatment. We both found working with a nutritionist on all of this pretty helpful too as I mentioned further up thread.

@VenusStarr I'm glad you slept better and baking a cake sounds lovely too. Good idea to book a holiday and have some relaxation and reflection time. Sending love as always.

Thank you @MyEasterEggs and agree, it is like a full time job all of this and we’re only just at the beginning. Wishing you every luck for the next step in your journey.

out of interest, how do you manage all of your tests / medications or is it being centrally co-ordinated by your IVF clinic? Just I am finding it a bit of a mind-field juggling various tests and results between GP, gynos, endocrinologists, urologists and knowing how best to move forward.

@ER12 welcome and glad you have had some clear advice from @Gardenlady543

We also saw Mr Ramsay. He's lovely. Ours was a different story - my partner's DNA frag test showed he was totally infertile basically but it turned out to be a testing error (!). So we didn't need treatment in the end but Mr Ramsay was the one who unravelled the mystery. Rate him really highly.

Best of luck x

@ER12 the thing I’ve found over the years is that you really have to advocate for yourself. While I take on advice from my clinic, they’ve fluffed up on a few occasions, and we’ve also been fed completely inaccurate information from another clinic in the past - something Mr Ramsay uncovered - so I’m wary of putting everything in the hands of others.

One example is that I’ve been told me to stay on my current dose of levothyroxine despite TSH rising whereas I should be upping my dose. It’s so basic but they overlook things. They also give me generic advice about ongoing treatment and I sometimes have to push to help them remember I didn’t come to them to get pregnant but to stay pregnant, and to consider the fact I’ve had a second trimester loss. I could go on. It can be a minefield. But my history is also quite complex and I’m not a typical patient so I don’t blame the clinic, despite feeling frustrated at times. They’ve done an amazing job in other respects. I just accept that I have to research and manage things to feel safe and have trust in my body.

Probably not the answer you’re looking for but please know you’re doing all the right things and coming to the right places. Wish I’d taken things into my own hands sooner!

@ER12 I should add that others may have had completely different experiences and feel able to put their trust entirely in their clinic without question, it’s just not been the case for me.

@MyEasterEggs thank you. That is helpful to know and glad I’m not the only one feeling like this. My husband thinks it’s crazy I’m having to do all this leg work and research but I think I’d even be the same if/when we get to an IVF clinic.

thank you also @Janefx40, reassuring to know Mr Ramsay is rated so highly and has definitely given me reassurance he should be our next port of call.

wish you all well on your own journeys.

@ER12 it can be very easy to doubt yourself and think you're being silly or pushy when things aren't happening pregnancy wise. The most common phrases you hear are you just need to relax and it will happen naturally (my dad still says this and I have no eggs left - we're using donor eggs). My advice is to listen to the clinic but also listen to your gut. This is your journey, so make sure you're happy with how everything is going. You sometimes have to push for things, so don't be afraid to do so. My husband was a bit too respectful of the consultants and the clinics at the beginning and he thought we should follow their plan blindly. But he's learnt over the years due to me pushing for things, clarifying things and challenging them that that is the only way to get answers and results. Most women who go through IVF will say they don't want any regrets or what ifs and part of that is by doing wider reading which it sounds like you're doing, seeking advice from those who are going through it and trust your gut and instincts. Good luck on your journey 😊

@ER12 it can be very easy to doubt yourself and think you're being silly or pushy when things aren't happening pregnancy wise. The most common phrases you hear are you just need to relax and it will happen naturally (my dad still says this and I have no eggs left - we're using donor eggs). My advice is to listen to the clinic but also listen to your gut. This is your journey, so make sure you're happy with how everything is going. You sometimes have to push for things, so don't be afraid to do so. My husband was a bit too respectful of the consultants and the clinics at the beginning and he thought we should follow their plan blindly. But he's learnt over the years due to me pushing for things, clarifying things and challenging them that that is the only way to get answers and results. Most women who go through IVF will say they don't want any regrets or what ifs and part of that is by doing wider reading which it sounds like you're doing, seeking advice from those who are going through it and trust your gut and instincts. Good luck on your journey 😊

@MyEasterEggs I agree with you completely about clinics. I was at one very extreme clinic for a while and I did trust them. It was more relaxing not having to question every decision. But ultimately I wanted to do embryo banking and that's not their thing so I have to leave. But even my current clinic which is technically a top clinic, I've had to pretty much manage my own treatment. Clinics will do the bog standard every time unless you stop them. I honestly think it makes IVF additionally stressful and traumatic.

So yes I know it's not ideal but I'm afraid a good clinic in my book is one that offers everything and will let you do the extras if you want to. But you do have to do the work if you're a complex case.

But @ER12 you may not be a complex case! You're doing the right thing sorting out the bacteria and 🤞🏼things may be simpler from there x

Thank you @Janefx40 and @DEIVF. It’s all just so exhausting. Sorry for sounding like a winge as well when you all are a lot further along in your journeys and my case sounds trivial at the moment in comparison to yours.

I have always had health anxiety (even before TTC) so this is playing into its hands nicely! I lurch from one thing to the next as I have the various tests done and now with the bacteria I’ve convinced myself we will struggle to get rid of it and/ or it will reoccur. Apparently the combination of Ureaplasma and Gardnerella is a really tough combination to get rid off and I worry how long we’ve had it given we’re not symptomatic.

Sigh.

Now to get back to the day job with a smile and pretend everything is fine 😩

@ER12 it doesn't really matter where you are in your journey or what the issues are. If they're concerning or worrying to you, then you shouldn't apologise or compare yourself to others. None of this is a competition as to who has the crappest, hardest history. We're all trying to understand our problems and seek support and guidance.
Trying to conceive definitely comes with its fair share of anxieties. So it's really important you take care of your mental and emotional well-being. Fertility trauma is very real and affects a number of women and I don't think there is enough understanding about it in the fertility community or support from the clinics. Whilst I haven't experienced it, 2 of my close friends have and they are still affected years down the line and after having kids.There's lots of things you can do to support your wellbeing - mindfulness, meditation, having accees to those that understand, doing things you enjoy and make you smile, spending quality time with yourself, your partner and family and friends. There's only so much you can control with this, so if you can, worry about what you control, not what you can't. It doesn't happen over night but is something you can get better at. Meditation has really helped me with this

Thank you @DEIVF you are right. I have started with yoga which I find helpful to calm my racing mind. Think I could also benefit from some talking therapy too.

best wishes.

New thread started meet you guys there :)

ERA EMMA ALICE testing thread #6 www.mumsnet.com/Talk/infertility/4673547-era-emma-alice-testing-thread-6

Evening ladies hope you've had a nice weekend. Is anyone here with / been with Care Fertility and had their level 1 or 2 recurrent implantation tests? I can't find much info on their website as to what they entail. Before starting with Care, through St Mary's recurrent miscarriage testing, I've had thrombophilia screen, cardiolipin antibodies, lupus anticoagulant, celiac screening, Vit D and thyroid function (all normal). I'm not sure if there will be some overlap with the St Mary's ones and Cares and therefore I don't need further tests with Care. I've had 3 eupiloid embryos fail to implant and after our 2nd failed transfer, our consultant advised surrogacy / adoption if the 3rd fails. After our 2nd failed implantation, I asked about further tests and he said they didn't have any more tests or treatmenr to offer me. We've a review on Friday with him and I just want to go in with as much info as possible on their tests. I've had the endometrio tests. I'm going to ask about a hysteroscopy and immunological tests but not sure if they do them and if I'll have to go another clinic. Thanks very much

@DEIVF threads close when you get to 1000 posts so we have started a new one which is the place to post your question. Link is just below your post.

See you there x