Fertility treatment Our story

Our next steps

May 9, 2018

I can’t believe it’s been two months since my last post. Things have been incredibly busy for us on the fertility planning and testing front but, here we are, on the “other side” (of that part of the journey anyway) with a firm and final treatment plan.

It feels good to have some understanding of what might have happened over the last 22 months. The multiple losses we’ve experienced following an uncomplicated first pregnancy and birth is something even the professionals have struggled to make sense of. And having no real idea of how and why we were experiencing secondary infertility and recurrent miscarriage has put an incredible amount of pressure on us lately. Sadly, we’ll never know the exact cause of each of our losses. Even our last pregnancy, where we lost a son who tested positive for chromosomal problems, could have ended when it did due to underlying clotting issues. The unknown is something we’ve simply learned to live with, and it’s something I’ll have to learn to cope with in a future pregnancy should we be successful in conceiving again.

What we do have, which is positive, is a fairly good picture of our fertile health over the last 6-9 months. Clear improvements have been made, we’ve reversed some problems and I now have a firm and final treatment plan for pregnancy, which gives us hope that we’ll grow our family someday. I genuinely believe this is the best we could have hoped for after a series of complicated investigations.

Final diagnosis

So, these are my final results for which I’m having treatment (you may wish to read my initial diagnosis and my proposed treatment plan for a ‘little’ more background info):

  • Subclinical hypothyroidism
  • Endometritis – inflammation of the womb discovered during hysteroscopy, linked to hidden infection (see my initial diagnosis)
  • Scar tissue – discovered and removed during hysteroscopy
  • PAI-1 gene mutation – on its own this presents a clotting risk and when paired with my MTHFR (C677T – heterozygous) mutation the risk increases

I had also been diagnosed with immune issues (elevated NK cells and raised cytokine levels) last year, which I’ve since reversed, meaning I no longer need immunotherapy. This has come as a huge relief because I instinctively felt the treatment wasn’t right for me. I can appreciate that it’s helped some women conceive and carry babies to term but I had also read about others no longer needing it after making lifestyle changes or addressing other issues. I also have fewer PCOS symptoms, which I feel has been supported by Chinese medicine, something I was sceptical about, but which has helped me in many ways, and so I plan to write about my experience of it.

Six months ago sperm DNA fragmentation was also a factor and Jonathan’s results showed that there was 29% damage. The advice given to us at the time was that this ideally needed to be below 15%, though it’s possible to avoid ICSI IVF (previously recommended to us by two private clinics) if the damage is below 25%. This was a concern for us as finances aside, I had more or less decided that IVF wasn’t an option for me, not at this time anyway. It’s a completely new avenue, with its own emotional and physical demands, and I feel I’ve just about reached my limit with secondary infertility and recurrent loss while trying to conceive naturally.

The good news is that, with a protocol of antibiotics, as well as dietary and lifestyle changes, Jonathan reduced the damage to 8%. I’m still amazed and the challenge now is of course to maintain that result. Going forward, he’ll continue with his male prenatal and 200mg of ubiquinol each day. He recently stopped taking omega 3 supplements as we now get enough from our diet, but otherwise, it’s just a matter of keeping up with eating well and exercising regularly. And I think it’s really important to highlight here the benefits to us as a family of improving our health. We were never unhealthy, but we’ve made some significant lifestyle changes, which have become new habits. To me, those are things we need to hold onto, no matter what the future brings.

Treatment plan

To support my final diagnosis, this is my agreed treatment plan:

  • Continue with thyroxine before and during pregnancy and regularly monitor Thyroid Stimulating Hormone (TSH) levels
  • Take antibiotics to treat endometritis (10-day course completed following hysteroscopy)
  • Take serrapeptase for two months following hysteroscopy to help break down remaining scar tissue
  • Start antibiotics (15-day course) from positive pregnancy test to address potential inflammation issues, which can be caused by endometritis and hidden infection
  • Start prednisolone from positive pregnancy test to address potential inflammation and immune issues
  • Start aspirin from a positive pregnancy test to address clotting risk
  • Start heparin injections after 4/5 week scan to address clotting risk

Previously, it had been suggested that progesterone might be of benefit, however, I’m a big believer in getting proof of the need for any kind of treatment, so I had a progesterone test done last week. My levels are high and the length of my luteal phase has improved, as has my cycle in general, so this won’t form part of my plan.

What’s next for us?

While we’ve been encouraged to try again from a medical perspective, emotionally it’s just not the right time. We’ve had two very trying summers, experiencing losses and coping with due dates and anniversaries, so plan to stick to our plans for a guaranteed summer of fun. I really want us to connect again as a family and enjoy what we have.

We’ll continue working on our health and nutritional needs, and I’ll be keeping up with the Chinese medicine and reflexology to support my cycle, something I’ll touch on in a series of blog posts covering each part of my diagnosis. I feel I can confidently share the support I’ve been getting now that I have a clearer idea of where I’ve been, where I am and where I’m going.

Meanwhile, I’m enjoying finding time for me and a little self-care.

Love,
Sarah x

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5 Comments

  • Reply Olivia May 10, 2018 at 3:36 pm

    Hi Sarah, great blog! Thanks so much for sharing. Such courage and determination despite your losses!! I do have a few questions…..
    – Did your original scan with the recurrent miscarriage clinic show up any issues or was it all clear?? If so what made you pursue further testing?
    – The sub clinical hyperthyroidism, was this uncovered by a routine Gp blood test or under a specialist? Did you have any symptoms?
    – We’ve been advised not to go for the DNA fragmentation as the only treatment is antioxidants via a ‘wellman’ type supplement. But I see your partner took antibiotics?
    – Which fertility clinic did you see in London following your recurrent miscarriage investigations?

    As you know we’ve just had our first round of tests with the RCM clinic and I came away feeling like I didn’t trust they were being thorough and inclusive, in terms of all causes for recurrent miscarriage. I think my expectations were high and I know it is limited what they will investigate in terms of funding and evidence base. I suppose I’m finding it hard to know how much I trust in them and at which point I pursue further investigations? Did the recurrent miscarriage clinic results indicate you should pursue further tests or were you having particular symptoms that prompted you to pursue further tests? I feel like I don’t want to leave any stone unturned but at the moment I have no idea which stones to unturn… I guess because I’m not experiencing any unusual symptoms and my ultrasound was normal with no visible concerns…. they said….. Would be great to hear more…. Thanks lovely for taking the time to share your experience xxx

  • Reply Olivia May 12, 2018 at 12:38 pm

    Hey Sarah! Firstly thanks so much for sharing your story so far, this post is really informative and so helpful. But with information more questions get raised, I suppose selfishly in relation to my own journey.
    As you know we have just started our investigations with the recurrent miscarriage clinic and I came away feeling deflated and concerned they weren’t looking at enough. I do get this is an NHS clinic therefore they’re going to go with what the evidence base says.
    So here are my questions for you, hope you don’t mind….
    – When you had your ultrasound with the RMC did this show up anything that gave you an indication you wanted to go for the hysteroscopy? They said there was nothing of concern on my scan but I’m worried it may not show up everything…
    – How did you find out about your subclinical hyperthyroidism? Through a routine Gp blood test or did you pursue this elsewhere?
    – What made you go for the DNA fragmentation? When I brought this up at the RMC they told me not to bother as the only treatment is antioxidants, so taking a male pre natal or Wellman supplement…. But I read your partner took antibiotics?
    – Lastly, which private fertility clinic did you go to in London?

    I’m feeling quite overwhelmed about all the information out there and find myself doubting professional opinion at times. I guess I just feel I don’t want to leave any stone unturned before trying again but I’m feeling a bit like I don’t know which stones to unturn and in what order! If that makes any sense!
    Sorry for all the blunt questions 😬 and thanks again for being so clear, honest and compassionate by sharing this. Love to you💕 Olivia xxx

    • Reply Sarah May 12, 2018 at 8:52 pm

      Hi Olivia

      I’m sorry you came away feeling deflated. I found the lack of answers following three losses very difficult to accept. As you say, there’s only so much the NHS can do, but at the same time, I can understand the need for answers and some kind of plan.

      I wasn’t offered an ultrasound until after our fourth loss and while they didn’t find anything of concern to them, a suspected fibroid was mentioned, as was a sub-endometrial area. It was enough for me to decide I wanted a hysteroscopy. It was already on my radar after hearing Lesley Regan speak and she offers a hysteroscopy after five losses at St Mary’s recurrent miscarriage clinic. Losing a fifth baby before having all the investigations I could have just wasn’t an option for me.

      My thyroid panel was normal in late 2016. Subclinical hypothyroidism wasn’t diagnosed until late 2017, after my losses, when I decided to have a private test. So this has only become a factor recently. My GP acknowledged the results though and so my bloods are tested at the surgery every 6 weeks now.

      We were told not to bother about sperm DNA testing either, but as it’s being trialled at Tommy’s, there appears to be some interest in it, and the various private clinics we spoke to had seen some success with patients after diagnosis and treatment. My partner takes the Zita West prenatal, 200mg of ubiquinol and he was also taking omega 3 fish oils, however, he gets enough from his diet now so his supplement protocol is quite simple. The antibiotic protocol, which lasted for 45 days, treated sperm DNA damage and hidden C, which I touched on in an earlier post. He’s also vastly changed his lifestyle.

      We went to Zita West clinic and saw George Ndukwe. He was good, very supportive, but they didn’t carry out the hidden C test nor do they organise hysteroscopies, and that’s why I decided to go to Athens last month. I felt Serum IVF (while we’re not currently IVF candidates) were a good shout. They’ve been a great find.

      Sarah x

  • Reply Olivia May 13, 2018 at 10:17 am

    Thank you ♥️ I’m under Lesley Regans team. Hoping that’s a good thing, despite my initial experience. I’m going to go back and read all your blogs again. Make some notes, go back to my gp about my bloods and then go back to the RCM in July armed with a bit more knowledge, so we can make an informed plan from there. Thanks Sarah, all this information you’re sharing is invaluable! Xx

  • Reply Olivia May 13, 2018 at 7:05 pm

    Thanks Sarah! Such helpful information. I’m going to go back and read all your blogs together and take some notes, make an appointment with my Gp to go through my bloods again and come up with some questions so we can make an informed decision about where to go next when we get our results in July. Your information really helps unpick everything when all the info out there can feel really overwhelming! Thank you xx

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