Dear Professor Winston,
I realise you must be very busy but wonder if you could advise me how to help my daughter in law. She has always had painful periods and was told she had a cyst but to ignore it unless the pain got too bad to cope with. Recently she was told she now has 2 cysts and that she should have them drained and removed laparoscopically. The first surgery was cancelled but she was taken to theatre on the second admission. When she was in recovery the surgeon told her she had the worst case of endometriosis he had seen, she would need to see an expert in the field as it was beyond him, her tubes were totally blocked so she could never have children naturally and she may need a colostomy because the bowel looked badly affected too. Only when she was on the ward did she realise he hadn’t done anything at all except look at the extent of her internal problems. She was then told she needed an MRI, a hormone implant to attempt to ease the problem and antibiotics. She managed, with difficulty, to get the implant and the antibiotics sorted out and was given an appointment for an MRI which she had before Christmas. When she had the MRI and asked about the results she was told she should have been given an appointment but that hadn’t happened and, of course, it’s almost impossible to get anything done anywhere over the Christmas break. She then had the longest, heaviest period she has ever had which made me wonder about the effectiveness of the implant. She is now faced with trying to sort out who to see for her results, if the hormone implant has failed or wasn’t implanted correctly and trying to find out what specialist she should be seeing. All this when she is absolutely devastated to know the children she longs for will only ever be a remote possibility if she can have IVF and, at 39, she can’t get even one free try at that as her health authority cut-off age is 35. I just haven’t the knowledge to point her in the right direction and, as a mum, I can’t begin to imagine how she really feels so can only sympathise with her. She and my son are devastated and although I can’t make everything all right I feel I should be able to do something. If you can offer any help I would be very grateful as it seems she has been badly let down by the medical staff she has seen up to now and time is not on her side for sorting this set of problems out. i have tried to cover everything she told me in the hope you may be able to help me do something. Yours sincerely S
Dear S,
I am not sure whether things are quite as urgent as you suppose, though I am sure she feels devastated. The Christmas break is two weeks and the loss of fertility at any age, particularly at the age of 39 or so, is not sudden but more gradual than you might think and after all treatment for the endometriosis has been started. Having an MRI scan is undoubtedly the right investigation and there will need to be a calm period of careful discussion and evaluation before a decision is to be taken about IVF or surgery – or just drugs alone, and where to go for the most expert treatment. I would not personally be too worried about the talk of a colostomy – this seems extremely unlikely as once she is on hormone suppression (as she is – that first heavy period is not unusual) the endometriosis will gradual stop being active. And actually, in the very long term, it does get better after the menopause so a colostomy would be pretty unusual.
My feeling is that she should continue on suppressive hormones – which she has started. After the MRI is evaluated, she may need another laparoscopy with a surgeon who is experienced at this kind of interventional surgery. I also think it cannot be understated how important optimistic reassurance from you will be for both of your children. Oh – by the way – you can never say that she will not conceive and that is a foolish understanding of her situation. I have seen numerous cases which were thought totally hopeless which gave the lie to this statement or this impression of what was said.
Best wishes
Robert Winston