Dear Professor Winston,
I read with interest your article in the Guardian recently and can relate entirely to what you were saying about misinformation, confusion and frustration within the fertility system. Three years ago, when I was 39, my partner and I started the fertility experience after trying for a baby naturally for four years, having one miscarriage during this time. Coming up to 40 I didn’t want to miss out on the three rounds via the NHS route I was entitled to and saw my local fertility specialist who first tested us both. Our levels were both a little low due to our ages (my partner is a year younger than I) and he started me on a course of Clomid. To our delight, I fell pregnant on the second month, however I miscarried after 10 weeks. I was then referred for IVF and had a choice of where to receive this. I did as much research as best I could and chose the Herts & Essex clinic in Cheshunt. Throughout my adult life I have suffered from various gynaecological conditions for which I have had surgery for, including a cone biopsy. I was also diagnosed at 11 years with Lupus, which has thankfully been in remission since my mid twenties. Foolishly I was expecting that my medical history would be thoroughly looked into before proceeding with any fertility treatment. How wrong I was! There was no individuality to my treatment and although the first round went to full blastocyst, the further two rounds deteriorated in their success. I was told that all three rounds had to follow quick succession due to me turning 40 and we felt as though we were on a production line and that they were just going through the motions of the treatment without any due care or attention. I coped pretty well at the time, as I didnt know any better, but looking back on the experience it was pretty grim. I then went back to get advice from my local consultant, asking about trying clomid again. He said to me the IVF obviously didnt work so that is that. Your best option now would be egg donation or adoption, no point trying clomid. Helpful! In the end I spoke with my GP and he prescribed me a round of clomid and in August last year, after the third round, I fell again. I was a little anxious and they allowed a scan at 11 weeks which showed a faint heartbeat. I had a further scan a week later and there was an empty sac. I went on to miscarry naturally a few weeks later which was a pretty traumatic experience. I asked my GP to be sent for investigations re: the miscarriages but he told me that he has never sent anyone to have investigations and for them to have a conclusive answer. I certainly dont want to go back to see my local consultant after my last visit. I have various recommendations from friends about other specialists and have driven myself mad reading up on line (forums just depress me!). I dont know whether I should go to see a gynaecologist about my past problems (my gynae who treated me for all my problems over the years has sadly passed away recently and I have seen various different people since who dont understand or know my history). Or do I find a consultant who can look at the whole package ….shouldnt they all do this? How do I know who to go and see? Im half hoping that when someone looks at my history that there will be something glaringly obvious that is a cause of the miscarriages, although not under any false illusions. We cant really afford to pay for another round of IVF although it could be an option. Its worth every penny if it works but a hell of a lot of money to lose if it doesnt! I feel that anyone we see will push for IVF when it may not be required. A gynae told me recently that a cone biopsy could be a cause of the miscarriages? As I am writing I can see Im going round in circles with this and also aware that time is ticking as I turn 42 this year. Any advice would be greatly appreciated. The Genesis Research Trust sounds remarkable and this is a great idea! I shall certainly donate and recommend to others with similar plights (and have already done so!).
Kind regards T
Regrettably, your letter raises many of my own longstanding concerns with modern fertility treatment. Ever since IVF was in development, I have been worried about the treatment of the causes of infertility. Although IVF was a vital and major advance, it has resulted in the establishment of a large number of clinics which offer IVF rather than looking at the underlying cause of infertility. This has resulted so often in what is fundamentally poor medicine. To give you an idea of what I mean, if you go to your doctor with pain in the chest he or she would regard that as a symptom and want to know its cause. Thus, the pain might be due to a broken rib, or indigestion, or heart disease, or the problem with a lung, or maybe something to do with your gallbladder – or it may just be a mild chest infection or possibly a bruise or muscle strain. The GP would not dream of sending you for open heart bypass surgery on the basis of the symptom of chest pain; he would expect full investigations. By comparison, if you complain of the symptom of infertility, the likelihood is you will be referred to a clinic which does IVF – and IVF to the exclusion of thinking about the underlying cause of the problem. I have devoted much time trying to see how one could change this attitude but unfortunately in the commercial world of medicine which is developing, with the IVF being so profitable, it is difficult to see how we can retrain ourselves to think more holistically.
On the face of what you have told me about yourself, I am rather unconvinced that IVF would be a particularly good option. It turns out that frequent regular, pleasurable, active sex is more likely to produce a pregnancy in many women than IVF. And this is increasingly the case as women approach the age of 40 and afterwards. But the fact that you have sadly had miscarriages is in one way strongly optimistic because it means that you can get pregnant. It turns out that as women get older quality of their eggs tends to deteriorate and miscarriage becomes much more common in all women over the age of 40. By the age of 42 probably as many as 40 or even 50% of pregnancies end up as a miscarriage. The reason for this is uncertain but it may be nature’s way of screening for chromosomal abnormalities which are more common in older women. That, of course, is why investigation of the cause of miscarriage is important, in spite on what your doctor has said. Unfortunately, we cannot go back and look at the tissue that you miscarried, but it might just be worthwhile getting your own chromosomes checked to see if there is any underlying chromosomal problem. You mentioned that your husband is younger than you so it is rather unlikely that there is a genetic problem with his sperm.
The other issue you mention, is the diagnosis of lupus even though it is now quiescent. Women with these auto-immune diseases are more likely to miscarry and Lupus is a famous example. Therefore, it might be worthwhile getting your immune status checked to make sure there isn’t any background problem.
You mention a cone biopsy. I assume therefore that at some point in the past you have had some problems with your cervix. There is a lot of vague evidence that people who have cellular abnormalities of the cervix are slightly more likely to be infertile, and certainly a sizeable current biopsy may increase that risk. That can be a good reason for undertaking IVF in people like you, as the nature of the process means that the cervix is bypassed. Miscarriage in people who have had a cone biopsy is usually later in pregnancy than you describe but you haven’t given me any details about your pregnancies; for example, was the fetus clearly seen on ultrasound and whether a heartbeat was clearly established?
One of the ironies about your treatment is that you rushed into in vitro fertilisation because of the time limit due to your age. It is regrettable that the NHS encourages this rather than having a more flexible attitude to establishing the cause of the infertility and to not treating it merely systematically. Many resources are wasted in this way.
Finally, one other thing; it may well be worthwhile getting a hysterosalpingogram (HSG) done. This might show whether there is any internal problem with your uterus and with careful imaging it may be able to detect if is there is any obvious damage to the cervical canal following a cone biopsy.
In summary, I have to say to you that it must be worthwhile to keep trying. You have managed to get pregnant and it may well be just having regular sex is your best option. I do not normally recommend clomiphene treatment in older women but the fact is in your case it seems to have worked in the past can be no danger in continuing with that very gentle medication if you feel that you would like to.
I cannot believe that you could not find a good general gynaecologist with an interest in reproductive medicine in your part of the world but it does sound to me as if that kind of relationship and good advice might be really helpful to you,
My best wishes