I seem to be getting a lot of hits from people who are searching for Asherman’s Syndrome, and concerned that they might have it, and wondering what to do next. So, this post is for them.
If you are worried that you might have Asherman’s Syndrome, the first thing to do is to take a deep breath. I know it’s scary, and upsetting, and heartbreaking to think that you might have lost your fertility, but the thing to hold on to is that Asherman’s Syndrome is treatable. It is very possible that you will still be able to have a baby, with appropriate treatment, even if your uterus is almost completely scarred up.
The symptoms of Asherman’s Syndrome include:
- A change in your periods, usually after gynaecological surgery. They may become very light, become much darker and often become brown, and may be more painful.
- Your periods may have stopped altogether. If you have cramping each month when your period is due (and this can be severe) but no bleeding, and you know that you’re ovulating, chances are that is isn’t a hormonal issue, it could well be Asherman’s.
- You may be suffering from infertility.
- You may be suffering from recurrent miscarriage.
The bottom line is that if you are suffering from one of these things, you need to see your GP, especially the first two. If your only symptoms are infertility or recurrent miscarriage, there are a thousand possible causes for these, and your GP will refer you to the right people after a certain length of time.
The problem is that a lot of GPs, and a lot of doctors in general, either don’t believe that Asherman’s Syndrome really happens, or think that it is so rare they just don’t believe they’ll ever see a case of it. We all know that they’re wrong, but even so they may send you away to “wait 6 months” or to try going on the pill, or even a course of provera to try to bring on a period. None of these will make any difference if you have Asherman’s Syndrome. If you’re not sure that you’re ovulating, then it’s probably worth trying a course of provera, and if you’ve only had one period following a D&C or ERPOC, yes it’s worth waiting till your next period to see what that’s like, but don’t wait forever, and don’t let yourself be fobbed off too many times. At the end of the day, if you are sure that something is wrong, it usually is: you know your body the best.
So, you go to your GP and they don’t seem too certain, and aren’t sure about referring you onwards to a gynaecologist there are a few things you can do. Firstly, you can request a referral to a gynaecologist. As a patient, you do have a right to request a referral, and in the UK at least, GPs are taught that patient request is a very valid reason for referral, and one that they should follow. You can be as firm as you like, but try to be polite. At the end of the day, if you go in and say “my periods are grossly abnormal, there has been a significant change since my D&C, I am concerned and I want to see a gynaecologist,” there’s very little they can or should do to argue. Secondly, a little trick is to ask for an ultrasound scan to assess your lining. Ultrasound scans don’t usually show adhesions, but they do show your endometrium, and the thickness or thinness of it. They show if the endometrium is patchy which, along with a thin endometrium (at mid-cycle) is an indication that something is going on in there, and this can then be used as a reason for referral.
Once you’ve been referred, your gynaecologist should listen to your concerns, and they will probably do one of two things: an HSG (an x-ray with contrast injected into the uterus which shows the shape of the uterus and any adhesions) or a hysteroscopy (looking inside the uterus with a camera). There is one Asherman’s expert in the UK who uses 3D ultrasound for diagnosis, but he is the exception, rather than the rule.
If they diagnose you as having Asherman’s then they will discuss the treatment with you. It’s a really scary time, when you hear the news, so take some time to look after yourself, and remember that this isn’t the end, it is treatable. Treatment is through a hysteroscopy, with or without a laparoscopy depending on the surgeon’s preference and the severity of the adhesions. The surgeon will use microscissors to cut the adhesions, and once done may leave a stent of some kind in place (in the UK this is usually a coil, in the US it is usually a balloon catheter) to try to prevent the adhesions reforming. They will usually prescribe a course of oestrogen and progesterone to stimulate the endometrium to regrow.
Unfortunately, you do have to be careful with your surgeon. Most are good, but beware that some will believe that a further D&C will solve the problem, others will suggest using a heat source to cauterize the adhesions, and separate them that way. If this happens, run for the hills, as they may make your condition worse. Seek a second opinion. Make sure that you discuss exactly what your surgeon will do before you agree to the surgery.
Some people need repeat surgery, as adhesions have a nasty habit of reforming. If this happens, don’t panic, it doesn’t mean that all is doomed (easier said than done, I know!) others will find that even with their adhesions removed their endometrium will never be as thick as it used to be again, and their periods will never return to how they used to be. It’s a difficult prospect when this is the case, but it is still possible to conceive. Don’t give up hope. There are women who have conceived and had healthy babies with endometriums less than 4mm thick.
Lastly, for more info, go to http://www.ashermans.org, there’s lots of information on there, and an online support group.