Monday, 12 July 2010

Endo, endo everywhere

Endometriosis is a condition that you usually associate with the pelvic organs (the uterus, ovaries, fallopian tubes etc); however it is not exclusive to these areas. Endometriosis can be found pretty much anywhere around the body, though cases of extra pelvic endo are rare. Below is a list of sites in which endo has been found, although I’ve tried to make the list as complete as possible I admit I may have missed some items (feel free to add any in the comment box below!). I’ve put the medical names of each site in brackets in case anyone would like to further research these areas.

The Brain (cerebral)
The Heart (myocardial)
The Lungs (pulmonary or catamenial pneumothorax/hemothorax/hemoptysis)
The Diaphragm
The Liver (hepatic)
The Stomach (gastric)
The Kidney (renal)
The Pancreas (pancreatic)
The Intestines (ileum or colon)
The Appendix (appendiceal)
The Navel/Bellybutton (umbilicus)
Tear Ducts (nasolacrimal)
The Nose (nasal)
The Skin (cutaneous)
The Buttocks (gluteal)
The Leg Muscle (soleus and gastrocnemius)

Now if you read any of the above links a frequent comment you will probably notice relates to the rarity of endometriosis outside the pelvis. While it is true extra pelvic endometriosis is rare, it can be quite serious. Extra pelvic endometriosis can become malignant, although again this is quite rare. The case of endo of the heart reported above proved to be fatal. If you read the case of gluteal endo reported above it turned out the woman was left permanently disabled. Generally the way to recognise extra pelvic endo is if you find there is any unusual pain or bleeding that occurs in regular cycles, so it pays to be wary, but not paranoid!

Friday, 9 July 2010

First Worldwide Study Finds that Women’s Productivity at Work is Significantly Impacted by Endometriosis

Some time ago the Global Study of Women’s Health (GSWH) was started by the World Endometriosis Research Foundation (WERF). This study recruited 1418 women aged between 18-45 from 16 different countries around the world. The study used questionnaires to assess the impact endometriosis on their lives. During the 26th meeting of the European Society of Human Reproduction and Embryology some of the preliminary results of this study were announced. The main press release for these results can be found by following this link. However, I’ll summarise a few of them now.

Average time between onset of symptoms and diagnosis was found to be 7 years. This is a saddening but fairly typical result.

65% of the women with endometriosis presented with pain. The press release doesn’t go into detail as to what type of pain was most prevalent, but I can take an educated guess at dysmenorrhoea (heavy, painful periods) and dyspareunia (painful intercourse) being at the top of the list.

The stage of endometriosis was not related to the amount of pain the woman suffered. This echoes the findings of previous studies; in fact some studies have suggested minimal endometriosis can be more painful than severe forms of the disease.

The pain decreased productivity at work by 38%, this loss of productivity was actually due more to problems at work rather than time off for illness. That 38% equated to around 11 hours per woman week lost to endometriosis. Now let’s do some quick calculations. There are an estimated 2 million endo sufferers in the UK, each losing 11 hours per week, that’s 22,000,000 woman hours of work lost each week or just over 1 BILLION woman hours lost every. Single. Year. For the USA that number goes up to approximately 30 BILLION woman hours per annum. These are the sort of statistics politicians are really interested in, so if you bump into your MP or Senator or Mayor and you really want to get their attention, shove some of those statistics in their face.

The study also found that non-job related activities such as exercise, housework, childcare, shopping, studying etc were also severely affected by the pain caused by endo, but you probably already knew that.

On a different but quite similar note there have been a series of talks on endometriosis from the Endometriosis Foundation of America which make for very interesting watching (I would advise watching the videos instead of reading the transcripts as some of them have been improperly transcribed). Here is the link to the video gallery.

Friday, 2 July 2010

Getting under your skin

Endometriosis can be found pretty much anywhere in the body (I’m going to do a separate post on that at some point, but I digress) for this post though I’ll be focussing on endometriosis of the skin, or cutaneous endometriosis as it is known. There have been several reports of endometriosis found on the skin, although the phenomenon is still considered rare, reports of this subtype of endometriosis go back to the 50’s. Most commonly cutaneous endometriosis is found on surgical scars and around the umbilicus (belly button/navel). Symptoms typically include cyclic pain emanating from a mass near/on a scar or the umbilicus and can be misdiagnosed as suture granuloma, lipoma, abscess, cyst, hernia or skin cancer.

Let’s take a look at reports of some typical examples; three years after having a caesarean section a 37 year old woman found a nodule under her scar that became painful during menses. The nodule was removed surgically and after examination it was found to be cutaneous endometriosis. Another report found a woman with dark brown mass on the umbilicus associated with cyclic pain. Although the woman was found not to have pelvic endometriosis the mass on her umbilicus was found to be endometriosis.

The reason for me discussing cutaneous endometriosis is that a paper has recently been published in Brazil that suggests caesarean section greatly increases the risk of endometriosis developing on the scar. The study looked at 72 patients diagnosed with scar endometriosis between 1978 and 2003. It was found that the risk of scar endometriosis developing was far higher after caesarean section, where the risk was 0.2%, than other procedures e.g. episiotomy, where the risk was 0.06%. There are several parallels that can be drawn between cutaneous endometriosis and pelvic endometriosis. Both conditions are often misdiagnosed, both present with cyclic pain and we still don’t really understand how the disease gets to where it is. As cutaneous endometriosis appears around scars it could be hypothesised that somehow fragments of endometrium find their way into the open wound during surgery where they later form endometriotic implants.

The good news though is cutaneous endometriosis can be easily removed with surgery and once it is gone it usually doesn’t come back.