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End of Endo, If they wont listen .... !
January 20, 2006

Hello and a warm welcome from End of Endo - the supportive endometriosis newsletter.

Due to personal circumstances this newsletter is long overdue as some of you will be aware.

The central theme to this newsletter firstly highlights the appalling isolation and rejection (not only from the medical profession but from society in general) that most women with endo have to endure - adding insult to injury!!

Well, there is no point in highlighting a problem without then offering some sort of solution. Therefore, we then look at ways you can help yourself to overcome this extensive problem.

Let’s open the can of worms briefly and remind ourselves what women with endo have to endure!!! I know many of you are astutely aware of this issue, but it sometimes helps to focus ….. and then again, someone without endometriosis from the medical occupation may just read this newsletter.

Why is nobody really listening?


Millions of women around the world today who have endometriosis are simply NOT taken seriously when they try to express the pain, the lethargy, the tiredness, the bowel problems, eating problems, flu symptoms, and all the myriad of other strange or niggling symptoms!!! Not by their doctor, their family, their friends.

Why is this affliction not recognized by the medical profession for what it is - a serious disabling disease? Why are women being dismissed as neurotic, when some of them end up in the emergency department of their local hospital month after month? Why is it many insurance companies in the US do not recognize the disabling nature of this disease? Why is it I get messages from many women who are deeply frightened and feel so alone that they do not know which way to turn? Why are they not getting the support they desperately need!

Improved diagnostic tools and equipment have been around now for a few decades. And yet women still go undiagnosed because they, and their symptoms, are not taken seriously.

This disease could easily be classed as being of epidemic proportions; especially when you look at the figures globally. As time goes on, and more women finally get diagnosed, the more likely it is that most people will know someone who has been affected by this disease.

Let me give you an example - having moved to Spain and settled in, we have started to make new friends and acquaintances among the small expat community living out here. We have been here only 3 months and our circle of friends is still quite limited, BUT we have already met 3 people whose lives have been affected by endometriosis.

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Why are women dismissed as neurotic … its just a woman thing … oh, its natural for women to have pelvic pain ….. ?

Here are extracts from a Newsletter written by a nurse - broaching the subject of the psychological dismissal that so many women endure; not only from the medical profession, but from family, friends and colleagues.

This article first appeared in "Women's Health Forum," an interdisciplinary newsletter for physicians and medical students. (Published date unknown.)

(I have inserted the comments in italics in the following newsletter extract)

Psycho-Social Issues for Women with Endometriosis


By Nancy Petersen, RN
Director, St. Charles Endometriosis Treatment Program


In the early 1920's Sampson and others told us that women with endometriosis were infertile and that the primary pain symptom was dysmenorrhea. It was further asserted that the most frequently involved areas were the ovaries, and that the lesions were black, and/or brown. The original concepts further told us that pregnancy, menopause, or surgical castration would affect a cure. On these basic concepts all modern therapies have been based, including drug therapies suppressing ovarian function......

......... What is happening to women across the North American continent is that large numbers who fail to fit the original paradigm of endometriosis are undergoing psychological dismissal. This dismissal is very damaging in that they become isolated from their families, partners and the health care system. This dismissal is reported by Kate Weinstein in her book, Living with Endometriosis, to be as high as 75 %.

Since medical therapy does not eradicate the disease, and since laser vaporization and electrocautery have not been validated by follow-up study, most patients with endometriosis are at risk for ineffective therapy. Patients come to Bend (The Endometriosis Treatment Center) from around the world when multiple attempts at treatment have resulted in failure. Their stories illustrate that their dismissal is real, and can come from female as well as from male physicians.

They report being referred for counseling, psychiatric care, or just being ignored since they have not responded to treatment. As those around them begin to see the dichotomy between what the health care provider believes and what the patient is experiencing, considerable confusion develops.

Too often there is abandonment of the patient by her crucial support system and she grows more and more isolated. The degree of isolation and frustration is proportioned to the degree of treatment received (this statement not explained. - It could be seen that if a woman does not get the treatment she requires then she feels isolated and frustrated. BUT the more treatment a woman receives the more she begins to realize that this disease is not going to get better so this could deepen the sense of frustration .. catch 22).........

.......... The impact on their relationships and the quality of their lives may lack appreciation in the healthcare arena. In the presence of pelvic endometriosis, these women often exhibit abdominal bloating, abdominal pain, pale skin, faintness, restlessness, and sometimes low grade fevers. These symptoms in other patients would garner healthy respect by most physicians. In women with endometriosis, doctors are somehow able to excuse the presence of such symptoms and their denial grows more profound once the woman has been castrated for treatment. (Because there is no answer given by the doctor as to why a woman still has endo after having a total hysterectomy - after all, she was advised that the hysterectomy would get rid of it; and a doctor is unlikely to own up and say he was wrong!!!)

If five million men (US figures only) suffered unbearable pain during sex, bowel movements, and exercise, and were offered feminizing hormones or surgical castration as treatment, our attitudes would be quite different.

Women with endometriosis struggle with life altering pain, less than supportive attitudes by far too many healthcare providers, try to maintain relationships, family and careers, and they deserve our support and respect.

Until there is widespread agreement on the nature of this disease, the best outcome based therapies, and follow up studies to support all that we do for women with endometriosis, these women do not deserve the psychological dismissal many of them get.

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This newsletter is recognition among certain members of the medical profession that attitudes need to change, but there is a long way to go to see real improvement.

What is to be done to alleviate this very real medical dismissal and the isolation and fear that women with endometriosis suffer?

Key words come to mind here that need to be added to the vocabulary for women with endometriosis - understanding, support, tolerance, sympathy, compassion, patience, guidance, communication, feed-back, advice, sharing, hope, optimism, encouragement, reassurance …… these words sum up an attitude that women with endometriosis deserve, and acknowledges their complex needs.

Yes, the needs of women with endo are complex, because this disease is very complex in the different ways it affects women and the varying symptoms it brings; also the needs are complex because of the far-reaching effects it has on a woman’s life.

Unfortunately, it seems that the only way to change this huge problem, for it to be effective, is by action to be taken by women themselves.

This has already been started to some extent by the large numbers of message boards, support groups, websites, campaigns, political lobbying, writing to magazines and so on, that have been undertaken by women with endometriosis. But still there are many, many women who feel isolated, ignored and frightened. In this day and age this situation is beyond belief. We can put man on the moon, but not treat endometriosis; we have the astounding technology of computers and the internet and yet women still feel lonely, frightened and cut off.

One of the problems I have noticed (by the number of queries I get at the website) is that women can get such varying and frightening symptoms. They get in touch to find out more about their symptoms and to find out if other women have suffered the same; to find out if their symptoms are common; to find out what the expected outcome will be, and so on.

This is where communication is vital and can help hugely. Women need to exchange advice and compare experiences much more.

This can be achieved by more women joining internet message boards and support groups. There are lots of them available both on-line and in many towns and cities. The emphasis here is on exchanging advice and support between yourselves. There are many women who have undertaken different levels of research about endometriosis for themselves. They can provide a wealth of advice and information through the message boards.

This can be achieved by the following:
  • Joining message boards - using them and reading them
  • When posting a message at a message board - write a clear title for your message, so it prompts more women to read it. Do not just put ‘Please help’. Be more specific in your query i.e. ‘Help with laparoscopy aftercare needed’.
  • Register for more endo newsletters AND newsletters that cover linked subjects i.e Progesterone advice newsletters, infertility advice newsletters. You can weed out the ones that you do not find helpful.
  • Passing on endometriosis newsletters to other women with endo - including this one. I know this newsletter is sent out in fits and starts, but I would rather send out quality advice rather than sending out unconsidered blurb
  • There are over 1200 subscribers to this newsletter you are reading now; if most of those subscribers joined the message board at endo-resolved that would provide a huge resource for advice, support and feed-back. There are just over 230 members of the message board at endo-resolved at present and some very good support and advice has been shared, and this board is less that a year old.
  • Try to find out if there is an Endometriosis support group that meets up in your area. These groups can provide spin-offs as well; books you can borrow, making new friends, meeting other women socially.
  • As mentioned above, many women have done their own research into different aspects of endometriosis. If you feel you could write a short article about it, I would be only too happy to include it on the website at endo-resolved so that other women can gain from your wisdom
  • The same applies to the endometriosis stories that have been submitted to the website. These stories have given support to other women simply because they are learning that they are not alone. I personally feel I could do more to disseminate these stories, as they do seem to provide much needed assistance, and relief. Relief is a strange word, but it is relief, because women are finding out that what they are going through is not something strange, isolated, different - and this is the obvious irony to all women with endometriosis because of the huge numbers involved - the fact that before a woman is diagnosed with endo she has probably never even heard of it. How bad is that? This disease is more common than AIDS, and yet hardly anyone knows about it.
  • I feel guilty having not kept in touch with my newsletter subscribers more regularly, but the reasons have been explained. There is much more I can do in the way of providing support and passing on information. I plan to prepare a list of all the pages at the website at endo-resolved and sent them to you all as an extra mailing. The list will include all the pages, as some of them are buried deep within the website and you may not easily come across them all. I will give the address of each page with a brief description of the content of that page. Endo-resolved contains over 50 pages, which is a lot of content to find or read while on line; especially when you suffer from endo.

You can sign up for the message board at endo-resolved fromHERE

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I feel we have just hit the tip of the iceberg on this topic and not all the solutions are here. Addressing the issue of what to do regarding dismissal from the medical profession is a hard nut to crack. But things are changing, even if it is only gradually.

You could try printing this newsletter and giving it to your own doctor. He/she may not take on board the issues raised immediately, but from little seeds ........

Women have enough to contend with just coping with this disease, never mind trying to change the attitudes of society and the medical profession. You may best be served by looking in another direction for your health/medical support. This support could compliment what you have decided to do for your treatment for endometriosis through mainstream medicine.

  • Treat yourself to a therapeutic aromatherapy massage if you can afford it
  • Counseling can provide you with the emotional support you need, especially if you are not getting support from your family
  • Include some form of alternative/complimentary therapy as part of your treatment. You will be treated with respect and your endometriosis will be taken on board and validated, and you will be treated as a person - not just a disease
  • A manicure, new hair cut, facial massage - all these things are therapeutic and will bolster your sense of well being, at the same time as boosting your immune system


There is nothing quite as degrading to your immune system than a feeling of hopelessness and not having any power or self definition in your life. This is what happens to women over and over again when they try in vain to be understood by others; especially by those they approach for real tangible help to mend their ever declining health.

Please consider looking elsewhere for some holistic and caring moral/medical support if you are not getting it from a sympathetic doctor. You can continue with the treatment regime that you have decided upon, but get back-up alternative treatment/counceling/support if you can.

Your pain is as real as the ground you walk on, and it needs to be taken seriously. The outdated ideas and attitudes of the functions and workings of women’s bodies - that period pains are normal; and that menstrual functions are a dark taboo area not to be talked about too openly - are probably part of the reason that endometrioisis is given a bit of a wide berth by society. It deals with ‘women’s bits’.

Take heed of some of the advice above about opening channels of communication among yourselves. We have a saying in the UK ....... ‘If you want a job done properly, you are better to do it yourself.’ And nobody will understand quite as much as another woman going through the same situation.

yours with healing thoughts

Carolyn

www.endo-resolved.com

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