THE PATIENT’s PERSPECTIVE -- EUROPE

30 June 1998

by Lone Hummelshoj
European Representative, Endometriosis Association

I, and the women in Europe on whose behalf I am speaking today, welcome the opportunity to share with you the "plight" of those who live with endo on a daily basis. When it comes to awareness of endometriosis and available treatment, there is a difference between Northern, Southern and Eastern Europe, but there are also many common trends, which I shall focus on today.

I have had a tremendous response from the European groups, and will start with a quote from one of our members, which says alot: "women still have to fight alot in a condition where they are not able to fight at all".

The biggest frustration is still that of not being taken serious at an early stage, when pain is (still) the main symptom. This is most probably due to a huge lack of awareness about endometriosis -- also (and maybe in particular) amongst women themselves who have to learn to say "this pain is not normal" (it is not as if we are defective by design!). We need to be more assertive with regards to our own health -- but, as Angela mentioned, this is often difficult when you are young, and having to talk about an "icky subject". In return it may still be fair to say that a lot of general practitioners are not as familiar with the symptoms of endo, as they ought to be, so that they can refer women early to gynecologists, whom we must assume are.

If the woman has been "lucky" enough to get referred for a laparoscopy there appears to be a trend that public health hospitals -- probably due to a "time allowed per patient"-quota -- will operate and say nothing is wrong, and send the woman home as ill as she entered in the first place. We have a recent example of this in Norway, where the woman -- incapacitated by pain --sought out a private practise, was operated again a few months later, and they found endo and adhesions everywhere, and she lost a couple of vital organs too. These organs might have been saved if the first surgeon had had the skill -- or the time -- to recognise and deal with the endo.

What we are now seeing in Europe is that health care appears to be changing to the extent, where those who are often too ill to work have to pay alot of money on private health care -- because they are too expensive to be dealt with within the public health care system. It is worth noting that they often cannot get health insurance due to the chronic nature of the disease.

All this leads to late diagnosis, so we (the Association, and I am sure the same goes for the Society) often don’t see the endo-patient before she is infertile, and even more desperate for help. Often women are diagnosed either through a continuos quest of seeing many different doctors -- or, because they are admitted to casualty with assumed appendicitis.

Part of my own story is slightly opposite, in as much as I had been canoeing for 3 days with appendicitis, because the pain was no worse than what I was used to several times a month anyway. Everybody was used to me complaining of abdominal pain, so no one really took me serious until day 3 when the appendix burst and developed into peritonitis, and I was admitted to hospital. I was 15 at the time!

It still took another 8 years, before I was diagnosed with endo.

Once diagnosed the disease is often not explained properly -- what it actually is, that it is chronic and that it is often progressive -- that we are talking long term treatment as opposed to a quick fix. This quick fix -- in 1998! -- is still often "get pregnant and it will all be OK", regardless of the woman -- or the girl’s circumstances.

Everybody here knows that the success rate of treatment varies greatly from woman to woman, however, many women are still led to believe that medication will put everything right. Being "pushed" into a treatment, be that medicinal or surgical, often causes more fear or scepticism when it turns out not to work. Many take hormonal treatment for much longer than recommended, because it did not work first time around, or have repeated surgeries -- if surgery is available in that country. Many experience side effects worse than endo symptoms (if that is possible) -- but typically, women with fertility problems really are prepared to endure these, just so that they can have the child they so long for. It is frustrating to know that if these women had been diagnosed and treated when they first sought help, they might not be infertile today.

The trend in Europe at present seems to be leaning towards alternative medicine. Acupuncture, homeopathy, Traditional Chinese Medicine, a radical change of diet -- often associated with candida albicans -- reflexology, etc. I don’t think anyone are kidded into believing that this will cure endo anymore than traditional medicine does, but for many it offers effective pain management, without side effects. In countries like Germany there are pain management centres, but they do not yet work with abdominal pain -- it is as if abdominal pain is still not recognised as anything much more than an inconvenience women have to endure. Reflexology works for me, where pain is a big issue, and one of our Danish members have all but eliminated her symptoms from sticking to a macrobiotic diet. She does not care what she looks like on the inside, all she knows is that she no longer has to go to hospital every month for morphine injections. With "success stories" like these, alot of women, who have suffered for years, turn eagerly to alternative medicine, rather than to give up hope all together. I’ll spare you the stories of all those who can no longer work, who are on income support, whose relationships have broken down ......etc.

All the support groups in Europe say the same: we want to work closely with our physicians and establish good relationship with medical practitioners. Endo is a long term disease and should be treated as such. Alot of women say that trust in their doctor and being sure that he or she will support her with a view to long term pain/symptom management goes a long way towards a positive treatment result.

Patients and doctors must communicate, which is why it so wonderful that we, the patients, can be represented at these important conferences. If the time available to spend with the patient is the problem, get your nurse involved! In Denmark, at the largest university hospital, we are currently conducting a little experiment. It is up to the Endometriosis Association to ensure that the doctors -- or in this case, the head nurse -- have a list of local members who are also endometriosis sufferers. After having counselled a newly diagnosed woman, they then refer her to a fellow sufferer who lives close by. Rather than leaving with nothing, or being equipped with a phone number of an organisation, which represent an illness she doesn’t really understand yet, she can -- in her own time -- call member from that organisation, who lives nearby, who understands, who can give support and who can listen. So far it is working really well, and we hope to be able to replicate this across hospitals in the rest of Denmark. Feel free to steal my idea --free of charge (or you can make a donation to the EA!)

We are all very well educated these days. We have access to, and can afford, books, we read papers and magazines which bombard us with information, and we surf the net in a constant quests for answers -- (in some countries they may not be able to get books, but they are all on email and have access to knowledge that a variety of treatment is available in many other countries. This also goes for the women in countries, where doctors are only beginning to come up to speed with treatment of endometriosis). The quality of all this information can vary. And that is where we need a good relationship with our doctor. We may do the research ourselves, but we certainly need help in disseminating all this information in order to come up with all available treatment options, which in turn will enable us -- in conjunction with our doctor -- to make an informed choice of long term treatment.

Thank you for listening. I hope you will listen to me again in 2 years time, when I -- hopefully as a result of this session -- come back and tell you just how much things have improved for endometriosis patients in Europe.