Information and diagnosis of PCOS
The participants in this study often began their search for information in an environment of uncertainty.
I think one of the difficult things about it was because the symptoms are so diverse and I didn't feel like I had some of them. But I definitely had others of them so it was hard to actually work out whether it applied to me or not. And because no one gave me a definite "Yes, you have it", I still was saying well I don't know have I got it, no I haven't, you know, I don't know, this person says I haven't, this person says I have. So what was probably the most important thing was to find out, "Did I have it?" and what constituted the fact that I had it – so that was probably the most pressing thing. (Portia).
In order to "have an illness", there needs to be a recognition that problems being experienced are abnormal, and part of a greater disorder. In the case of PCOS, symptoms can be explained by other causes, such as stress, diet, lack of exercise and hormones. The path to diagnosis of an underlying cause is delayed, creating further problems with illness, fertility, state of mind and quality of life. Kitzinger and Wilmott refer to the frustration and anger PCOS women felt about delays in diagnosis, lack of information and an unwillingness of health professionals to take their symptoms seriously [13]. These findings demonstrate the dominant themes that women with PCOS face in their path to diagnosis.
Women suffering from PCOS present their initial problem, with differing symptoms that alone may not be cause for major concern. When associated with other symptoms, the effect is compounded and medical advice may be sought.
I had irregular periods as a teenager. My mother, finally after going from GP to GP, the GP just saying "Teenagers have irregular periods", found another GP who referred me to a gynaecologist, who did some tests, different blood tests, didn't do an ultrasound or anything. When I went back to see him he said, "Bit of a hormonal imbalance, come back and see me if you ever have trouble having children". As an 18 year old I thought "yeah right," and didn't think much more about it. (Jemima)
It was important to the women that someone recognised that they did have a problem. Radley talks about resolving the worry caused by uncertainty about signs and symptoms, by having others establish that one is really ill [22]. This social comparison provides a mechanism for the evaluation of one's symptoms. A medical confirmation of an illness can further reassure suspicions of an illness. In this sense, recognition of a problem validated the women's concerns.
Upset, I was upset when I found out. Relieved at the same time because finally I had a name for something that was wrong with me. (Cynthia)
Prior to obtaining verification of their symptoms, and due to their frustration at the delay in diagnosis, some of participants in this study approached the search for relevant information in a different way. Through past knowledge, gathering of information, and sometimes coincidentally via acquaintances, some of the women suspected that their symptoms did in fact reflect something called Polycystic Ovarian Syndrome, and presented this idea to their doctors.
I was probably self-diagnosed in the end... In between seeing the gynaecologists, doing loads of blood tests, an ultrasound, I was in a bargain basement bookshop, they had a one-dollar book on infertility. I opened it up and looked up irregular periods, read through the thing it said PCOS and I said "Hey I've got that, I've got that, I've got that!" So I went along for my follow up appointment, and he said, "You've got a bit of a hormone imbalance." I said "Have I got PCOS?" and he said, "Yes". (Jemima)
Considering the prevalence of PCOS, surprisingly few participants had knowledge of the condition. Once they were given a name, some completely identified with the condition, after doing some initial research.
I didn't know anything,, never heard of PCOS. When I went to the first endocrinologist I said I'd been putting on weight, noticed hair growth, no periods, skin tags and skin discolouration and after I'd done all the reading, they were all the symptoms for PCOS. So I didn't know anything at first. (Holly)
Sources of information are presented in different ways. The women with PCOS in this study identified a range of sources, and these varied in terms of the women's levels of satisfaction, in terms of quality, their expectations, access and availability.
Information sources
Most women were diagnosed by general practitioners, gynaecologists or endocrinologists. Their expectation was that they would receive information about their condition through this initial source. Experience of the initial information that doctors gave them was varied. It has been shown that there are marked differences between the different specialties in the diagnosis and management of PCOS [23]. The women considered that some doctors did not know very much about PCOS and most were not satisfied with this information.
"Some of them have got no idea. I think we know more than them" (Michelle).
Kitzinger and Wilmott reported a similar finding, as women who have sought information about their condition upset the doctor-patient relationship balance, complain that they are more informed than the doctors in general, and do not receive positive responses when they suggest treatment options [13]. This finding has been reflected in other similar studies [24, 25].
I went to my GP and he sent me on to an endocrinologist, and he told me that with the symptoms that I was telling him that I had, that I probably had PCOS and to go home and lose weight... When I went back to my doctor, he didn't actually know a lot about it. He didn't know a lot about treatments for PCOS. He was very supportive, in our wishes to have children... I'm sure there are doctors out there now who know a lot more about PCOS, I don't know about GPs, I never got a lot of information about it from GPs, but I'm sure it's well known. (Holly)
Doctors focused on fertility issues as the main problems for those with PCOS, often with the worst-case scenario being emphasised. This was evident in both the women who were trying to conceive, and those where this was not yet an issue. The baseline health risks of the syndrome were not emphasised. Some women were left feeling as though they were powerless to do anything about their condition until they wanted children.
I think it's important to ensure that the medical profession are fully aware, both male and female doctors, and have that information on hand, that first port of call for people who need more information and then to have something on hand to make it easier for people to find out information. I felt like the doctor just did not explain it to me properly and I think doctors need to, I mean they do it with everything. If she'd sat there and told me what my major risks were or whatever, I probably would have taken some steps to do things differently. But from this there doesn't apparently to be anything much you can do until you start having children, then it becomes an issue but as far as the doctors are concerned, unless you've got worse symptoms with the hair and those other things, but if you don't have many symptoms, its all just a matter of just wait and see. (Rebecca)
Some of the participants realised that, at diagnosis, the main issues of PCOS were not of great concern to them. This meant that they might only have retained the information that was important to them.
I really can't begrudge the information my doctor gave me, my local GP. I mean, I'm sure that if I had wanted to take it further, she would have been happy to get other references and things for me. Like I said, it wasn't relevant. It was just I had a name. (Martha)
Those that did have positive experiences with their doctors thought that they were fortunate and this kind of experience was rare.
My local GP is very well up on it... The thing I enjoyed about talking to that doctor was that he seemed to know what I was talking about. The symptoms and things like that. He was the one who said to me this is how you feel, this is what's happening and he was spot on. And he didn't make me feel like I was an idiot. That it was all in my head. He was really, really good. (Michelle)
Information at initial diagnosis was sometimes provided in a take home format, such as a photocopied page out of a medical textbook.
All she basically did was give me the name of the condition and a couple of handouts describing what it was. That was it really. (Martha)
Those who hadn't receive pamphlets wanted some written information to aid in their understanding, after the initial information had been taken in. However, pamphlets were also seen as just part of a whole resource package. Pamphlets had a number of advantages, such as being short, portable, local, and providing information on how to find further information.
That little flyer was really good. I liked it because it was Australian. I found out since then that lots of the stuff differs between America and Australia. But also because it was simple and easy and it was something I could give my parents and family, which is really important. It's hard to explain it. (Portia)
Often looking for information might involve a trip to the library, where books and resources can be found. Local libraries however, did not seem to be helpful, and one participant even felt uncomfortable with the idea. In this study, using a library was associated with level of education. The two women who considered the library, or used it, both had a university education. The woman who did not consider this resource had left school before matriculation.
I don't actually go to the library and say "Hello, can you give me PCOS stuff." Not that I should be ashamed of it but if I don't know stuff then I feel a bit embarrassed asking. (Portia)
The information found in books was scarce, outdated or not at a suitable level for the consumer. Occasionally, information could be found in generalist women's health books, but this often referred to PCOS as a condition of "too many male hormones" [26], which may encourage the stigma of this condition. Sometimes the information provided in books was regarded as paternalistic [27], not providing the information needed for shared decision-making.
I never found a book totally on PCOS... Most of the books that were written by the male doctor type, books I thought were quite clinical and didn't tell the whole truth. This is on reflection because at the time you don't know these things. (Jemima)
Dedicated support groups for PCOS are fairly new in Australia. However, one of the participants had sought out information from an American support group via the Internet prior to the establishment of the Australian network. Three of the women interviewed were involved in the Polycystic Ovarian Syndrome Society of Australia (POSAA), established in 1998. Seven of the women had been involved in a clinical trial regarding PCOS, and this provided contact with other sufferers, as well as information and exercise sessions, designed by a fertility clinic [17]. These groups provided the participants with a very positive experience as it was the first time that they had met with other women who had PCOS. This provided the women with opportunities to share experiences with other sufferers, and for finding information regarding their condition on both an individual and a more general level.
It wasn't until I started doing the diet study that I started communicating with other people that had it and all of a sudden you know I came to accept that I had it, and wanted to know a lot more about it... I think the thing that I did that was really good was that I did the CSIRO study, because there doors opened and the information I found. (Cynthia)
It was important for the women to be able to compare themselves with other sufferers. This gave them a frame of reference to rate their own symptoms. Some women came to believe that they were better off than other women with PCOS, which reassured them. The women found that networking with other women provided them with an opportunity to validate their experience, as well as supply them with practical information at their level, from other women with PCOS, and concerned their interests at the time.
I guess I've learnt the most from chatting with other women who've got it, and learning different things like maybe that is related to PCOS when before I thought it wasn't. I thought it was a different problem or whatever... Talking to other people is a huge thing. (Miranda)
Even taking all of the above sources into account, the Internet was the medium of choice for the participants to obtain their information about PCOS, as it had the advantages of other methods as a well as further benefits. However, while the Internet was considered the best way of obtaining information, it was not ideal for everyone. Nonetheless, the women who did not have easy access to the Internet thought that it would be the best way to obtain information, and were keen to use it. Seven of the participants had access to the Internet at home, two at work, and only one did not have any easy access. Five of the participants used the Internet on a regular basis, and four only used it sporadically.
Finally when the Internet was connected in late 1997, that was the explosion when I connected up to the Internet and thought "My God! – look what we've discovered!"... I've got that many bookmarks on the Internet. Tried to just become informed... Online is good,, but I understand that so many people it's not for them. (Jemima)
Although the participants were keen to use the Internet, they had variable responses to the information they found there. Some women found much valuable information, but some were disappointed with the quality, and others were not able to access the information they wanted. Often women found information on the Internet that they would not normally have received, and they shared this with their doctor. The Internet provided the women with evidence that they could present to their doctors, to which they would not otherwise have had access.
I did a lot of research on the Internet and found out a lot about different treatments for women with PCOS. But the treatments were mainly used in the United States, so I had to convince the gynaecologist that I could give it a go. (Holly)
The Internet had enabled communication via chat groups and email lists for some women. This interaction was similar to that found via support groups, yet it could remain anonymous. The participants found these very helpful.
That's the first thing I did was find out all the information and join a few email groups in Australia. I discovered there was a few PCOS groups, so I joined them... I've participated in some chat groups. (Holly)
Using the Internet did, however, require a degree of skill, and the women who were most proficient were more highly educated. In general, the participants were aware that much of the information on the Internet needed to be critically assessed.
I know how to sift though online material... It's a worry when some people present all sorts of witchcraft, heaps of the stuff and a lot of young naïve people do. (Jemima)
Some women also used the Internet in specific ways; obtaining information from support groups that provided email lists, newsletters and question and answer sessions. Information on the Internet was found to be available at different levels of understanding, and this was appreciated.
I think the thing about the Internet is that you don't have to read huge amounts at one time. You can have a little bit and absorb it and then have a little bit more of it. I don't know how you could do that any other way. So you can sort of go at a level when you're ready to. (Portia)
Preferences for information provision
There are likely to be a number of reasons for the participants' preference for the Internet as an information source. Firstly, frustration at the paucity of information available via traditional mechanisms to women with PCOS, may be one motivating factor for why these women preferred to obtain information via the Internet. Established health and medical information sources may be inadequate for the information that women want about PCOS. Women with PCOS need time to understand the complexities of their chronic condition. The average length of a medical consultation in Australia is 14.8 minutes [28], which may be inadequate for a condition such as PCOS. In addition, women diagnosed some while ago may not want to retell their story and going through tests again every time they change doctors for other opinions, or just to get new information. Many women have also had unpleasant prior experiences, which undermined their confidence in talking to doctors.
Secondly, many of the participants preferred the Internet because it is private and accessible from one's own home, rather than having to make contact with a library or with medical practitioners. Broom (2005) found that men with prostate cancer, had similar experiences, preferring to be anonymous in their pursuit of information. Women with PCOS find it an embarrassing disease and consequently they may seek anonymity when they look for information. They prefer not to discuss their hairiness, obesity and failure to become pregnant with others who would not understand or empathise with their experience. The women realised that they had many choices of information available to them through the Internet, and this did not seem to be daunting.
I like the way I can access the information, that I can do it all of the time, night and day...Because it's accessible, because there's lots of stuff on there, look up more than one thing. Because it's easy for me to use... I can do it privately as well. At least this way I can explore by myself. (Portia)
Finally, women with PCOS used the Internet because it provided them with a sense of control. This included control over the information that they received, the time they received it, the level of the information, and the amount of information. This finding was also reflected in men with prostate cancer by Broom (2005). This continues to upset the power balance between medicine and health consumers, as the women in this study were obtaining their information outside the usual medical sphere, and on their own terms.
Information about PCOS has grown recently. Women with PCOS want the most up to date information at their fingertips, and the Internet makes this information accessible. Women can become familiar with this area of knowledge, and learn exactly where to look, depending on their information needs.
Because there's a lot on there, there's a lot of different groups and different opinions, and you can compare it. Different studies, its not just one person's opinion. (Michelle)
Women's information needs about PCOS evolve as different parts of their lives are emphasised. Frank (1995) refers to people with illnesses telling stories to work out their changing identities, and women with PCOS need to do this at many different points in their life [29].
I came across some real life stories, which weren't really good because all of them had unsuccessful rates of fertility, so it just upset me... I learnt, I'm not alone, its good to know people around you have it. It's also good to hear that there are some people that aren't doing so well and that there's also good to hear the people who are doing well, because you can sort of rate yourself between that and where you're at. (Cynthia)
Many of the women in this study also had a high level of education, which allowed them to make use of more specialized information resources such as electronic databases, and enabled them to venture into unfamiliar areas such as medicine in their search for information. Much of this information was designed for people with medical training, so was sometimes inappropriate for the average woman with PCOS. However, the women in this group were discerning, and were happy that this information was available to them. The women with the least education in this group made the least use of the Internet, and information resources in general, such as reading material. These women preferred talking with a doctor.
As PCOS is a hidden disease, women with PCOS often have no contact with other sufferers. Other recent studies regarding chronic disease information seekers have illustrated a preference for sources other than the Internet [30], such as social networks. Perhaps this is why women with PCOS seem to make use of Internet for their health information, as well as to network with other sufferers. The Internet provides an initial anonymity, an arena to discuss sensitive issues, and a reciprocal support network, that can be further developed once trust is gained.
