Dear Professor Winston,
Firstly, thank you SO much for offering this service, as soon as I am paid at the end of the month I will make a donation. I’m so desperate for some unbiased, clear and informed advice. I ask my question knowing there are no hard or fast answers.
I’m now 41 and have been trying unsuccessfully for a baby for seven years with my husband. Prior to that I had been trying for five years with an ex. My husband has a child from a previous relationship and my ex went on to have a baby with a new partner easily. I’ve never, ever been pregnant and am one of the unfortunates thrown into the ‘unexplained infertility’ with little testing to actually find a cause. One NHS doctor told me it’s because I’m ‘fat’ (am latterly overweight) and others have told me it’s because I’m old, none have ever given me a satisfactory response to my argument that I haven’t always been fat and I haven’t always been old but, it seems, I’ve always been infertile.
I’m angered reading your latest book at how diagnostic testing still has not improved and how we’re still in the dark, fumbling around. I’ve yet to meet anyone who could give me definitive advice. My experience of NHS is ‘one size fits all’ and Private is ‘you tell us what you want to do and we’ll charge you crazy prices and give you no direction’. Sorry, am quite negative through sheer frustration
I’ve had two IVF cycles on NHS, no IUI as they kept closing the service and now say I’m too old.
I’ve never had an HSG but did have a laparoscopy prior to my NHS treatment and was told everything was fine.
I responded really poorly to stimulation drugs (300iu and 375iu respectively), first time I got four eggs, three mature, had two 2day embryos transferred but bled before test day. Second time lots more follicles but only one damaged egg (think I was told to trigger too late, I was convinced I ovulated naturally but was told I was wrong as this is impossible).
Fast forward to private treatment, paid to have AMH tested, 10.6, no additional diagnostic testing done other than private scan which showed a growth on my ovary. Because of time I paid to have this investigated. Consultant removed a 5cm round fibroma and my ovary along with it, luckily tests showed it was benign. He also expressed surprise that this had not been seen by NHS as felt it wouldn’t have grown that big in the six months since they scanned me.
Private cycle was cancelled and converted to IUI due to poor response (AMH went to 0.5 following oophorectomy) and dominant follicle, still unsuccessful. I was told no hope so to use donor egg.
Cycled abroad, tandem cycle. Used higher dose of stims (450iu) had three follicles still, only one egg. Normal fertilisation but arrested on day four. Had PGD testing on donor embryos (told Grade A but have little faith in this since), took Prednisone and had intralipids but still no success.
I have hypothyroidism and have found out myself, way too late, how important the thyroid is for fertility. NHS allowed me to cycle when TSH was over 7, private clinic allowed treatment when it was below 1. It’s been a battle with my GP to get them to keep testing my levels. It had finally stabilised when I had treatment abroad (1.6) but still had no luck. I have pernicious anaemia also so have Vitamin B12 injections every fortnight, hence the immunes treatment. Was also previously told I had tendinitis, then arthritis (and treated with Sulphasalazine for over a year) before being told I didn’t have it. I’ve recently had tests done in Athens where they (claim, at least) can detect hidden Chlamydia/bacterial infections inside the uterine cavity. I tested positive for Chlamydia, Bacterial Vaginosis and Ureaplasma so am due to take a course of antibiotics. I’m always asked during smears if I’ve had a Colposcopy as my cervix looks ‘cut’. Previously I did have an STI and my consultant there told me to tell the fertility consultant that my os is extremely small and that my inner and outer os are not in line with each other.
This is my last chance. My husband has agreed that we have one last try with my own eggs. We’re in massive debt, I had to leave my job working with children protection, and it’s almost finished our marriage off as the pressure has been so intense as I’ve become so depressed thinking that I will never be a mother.
My question is whether you think there’s any point in me trying again with an AMH of 0.5. If you think I would benefit from having an HSG at this late stage. And if there is point in me trying if you would advocate a totally mild cycle, trying Clomid or low stims or a repeat of high doses. And, of course, if there is absolutely anything else that you would suggest/recommend?
Apologies this post is so long, am just desperate for answers and know it’s hard for you to advise if you don’t know my background. There’s a fertility show in London next month which I don’t particularly want to go to but where I can get a free consultation rather than flying to Athens (which I really can’t afford, another part of the unscrupulous world of infertility is insurance – we went to Cyprus and weren’t warned by the clinic about the risks of Doxycycline and the sun; had to return home early so had to pay for new flights which our very expensive insurance is refusing to pay out on) so if I had a response prior to that time to help aid my decision I can’t put into words how grateful I would be.
Thanks so much for continuing to try to fight our corner and retaining your integrity throughout your career. It’s so refreshing to hear someone speak so openly and honestly about infertility.
Yours thankfully
C

Reply…

Dear C,

Let me be brutally frank, if I may. I am very unconvinced you should contemplate further IVF – certainly not with you own eggs. This sounds like a very remote possibility for you and at 41 with your history probably no more than a 1 in 100 chance of success. And if by some fluke you did conceive, you will be at high risk of a miscarriage. I cannot comment on donor eggs because you very coyly do not mention your BMI and you have not had an assessment of the inside of your uterus. Admittedly people with thyroid problems are more likely to be overweight, but it doesn’t sound to me as if your thyroid is a major issue. Incidentally, with a fibroid in one ovary, there is always the possibility of a small one on the other side and these benign tumours also predispose to poor fertility.

You would expect me to say this, but I do not think PGD is at all helpful in cases like yours, and regret that many clinics give prednisolone and intralipids without any serious evidence that this is a) useful and b) harmless. Nor do I believe that positive testing to Chlamydia and Ureaplasma is an indication of your problem with fertility in the absence of pelvic inflammatory disease. In the 1970s we did very extensive research into these organisms (which now everybody has forgotten) but it was very clear that there was very little connection between these active infections and infertility unless a person had evidence of tubal damage or ovarian adhesions.

It sounds to me as if you have a very understanding husband. Consider carefully whether you really want even more debt when perhaps this is a moment for closure and for rebuilding your life and your hopes.

Best wishes
Robert Winston

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