Endo What?

I'd tell you not to google it and spare you the gruesome photographs but I want you to google it, because endometriosis is a disease that affects one in 10 women. That is almost as many as breast cancer and I am pretty sure that most people reading this will have absolutely no idea what it is.

Two weeks ago a man shaved off my pubic hair in my sleep. Well, that's not strictly true. I wasn't asleep, I was unconscious.

Rather than being yet another inebriated incident to add to my litany of shame, said shaving occurred during an operation to treat the disease endometriosis. I'd tell you not to google it and spare you the gruesome photographs but I want you to google it, because endometriosis is a disease that affects one in 10 women. That is almost as many as breast cancer and I am pretty sure that most people reading this will have absolutely no idea what it is.

In brief(s), endometriosis is a gynaecological condition and the primary symptom is chronic pain. Endometrial tissue that should stay in the uterus decides to go off-road and implants itself at various points in the abdominal cavity. These implants grow and thicken along with the lining of the uterus in accordance with the woman's menstrual cycle and when a period starts, they break down and bleed too. There is no way for this tissue to leave the body, which leads to pain and inflammation. Other symptoms can include nausea, fatigue, severe bloating, back/leg pain and pain during sex. It can also lead to problems with fertility and increase the risk of miscarriage if a woman is able to conceive.

Endometriosis is not an infection, it is not contagious and it is not a sexually transmitted disease. No definitive cause has been identified and there is no cure. Fun, huh?

In 2007, after years of complaining to doctors about the symptoms I was experiencing (and had been experiencing since my teens) I had my first laparoscopy. Endometriosis is not visible on scans and cannot be identified with blood tests. The only way to confirm diagnosis is through surgery. Diagnostic laparoscopy is quite a tidy business and involves two small incisions - one in the belly button, to insert a camera and to pump carbon dioxide in to separate the abdominal wall from the internal organs. A second incision is made just below the knicker-line (cue shaving) and what I like to refer to as a 'poking device' is used to allow doctors to move the internal organs around to hunt for the demon endo. The surgeon struck somewhat rubbish gold and confirmed that I had endometriosis happily growing behind my uterus.

I had my second operation earlier this month following a difficult ten months during which my symptoms worsened considerably. This time around the operation involved laparoscopy with the added bonus of diathermy - the removal of rogue endometrial tissue by laser treatment. As well as shiny new belly button and knicker-line scars, I also got two (distressingly unsymmetrical) incisions on each side of my lower abdomen - one where the laser was put in and another where a cooling treatment was used to clear the smoke and stop it all overheating in there (I quite liked the idea that someone had to blow into a straw for the whole time but I was assured this wasn't the case. Sad face). After the operation, the surgeon said that the endometriosis had spread to several other places in my pelvis and that they had lasered the hell out of it. Then they gave me some lovely morphine and... well, who knows what happened after that.

Treatment options for endometriosis are limited - hormone drugs that place your body in a state of pseudo-pregnancy to deny the endo implants the menstrual hormones that they need to grow and allow them to 'die off' temporarily, steroid nasal sprays that do something similar and helpfully also reduce bone density, a variety of surgical procedures to cut and burn away the tissue (which in most cases will grow back and, to add insult to injury, seems to flourish on scar tissue) and, that trusty old cure-all, hysterectomy. Except if the implants have grown on tissue that is not on the reproductive organs, such as the stomach, intestines, etc, then this doesn't work either. Some women have found that symptoms are reduced after childbirth (if they are able to get pregnant) but, personally, I think that a baby is a pretty hefty commitment to a painkiller. In my own case, after some horrific experiences with medication, the things that have worked best so far (combined with painkillers) are the natural options - a diet and supplement regime developed specifically to work against endometriosis (link to Dian Shepperson Mills' brilliant book on this below) and as much regular exercise as the pain permits. However, whilst these things help they are not a cure and they have varying levels of success depending on the severity of the disease.

So, why do so few people know about endometriosis? Why are we still fighting in the dark?

I think the fundamental issue is that girls are told from a young age that periods are painful. It hurts, kid - take your painkillers, strap on a hot water bottle and get on with it. Yet, there is no gage given for menstrual pain. Yes, there is likely to be some discomfort and cramping, what with all those muscles contacting to push blood and tissue out of your womb once a month, but if you are crippled by agony and unable to function during your period that is not normal. If you are vomiting or passing out from the pain or can't go to work/school, that is not normal. If you have pain at ovulation or at any other stage during your cycle when you are not menstruating, that isn't normal either. These are warning signs that something could be wrong and should be monitored and discussed with a doctor.

Unfortunately, there can be reluctance by some GPs to take pelvic pain seriously and also to give credit to female patients for knowing their own bodies, contributing to a diagnosis time for endometriosis of anything from five to ten years. When I moved house in 2005 I found a list of symptoms that I had taken to a doctor about six years beforehand because I suspected that I had endometriosis. He dismissed it without discussion - 'No, it's not that. You'd know if you had it.' Yeah, thanks doc. I did know.

Another obstacle is that people just still don't feel comfortable talking about things like this. That old, embarrassed 'Christ! Women's problems!' attitude. I mean, who wants to listen to people talking about periods?

I do.

Because this isn't just 'talking about periods'. It is about raising awareness of a disease that is under-researched, underfunded and that ruins lives, and we all need to get over the stigma of talking about it. It isn't just women that need to be talking about endometriosis - men need to be made aware of it too, as this is a disease that can seriously affect the lives of the women that they love. Girls need to be taught from puberty what is healthy for their bodies and be given the confidence to assert themselves when they are concerned, in order to get the treatment that they deserve. After the dismissive GP debacle I vowed never to be pushed around again when it comes to my health and I haven't been. This is a tough disease to nail down but diagnosis starts with standing your ground.

Next week is Endometriosis Awareness Week (March 3-9). Endometriosis UK will be organising various activities, online support groups and drop-in meetings to raise awareness and promote discussion. Information can be found here.

The first Million Woman March will also take place on 13 March. This is an international event involving participants from 53 countries. It is not a sponsorship event, instead it is about raising public awareness and showing solidarity. The London Event will take place in Kensington Gardens. If you have the disease, know someone who does or just feel like getting involved then you can register to join the march here.

At the moment I am working through the sinking feeling that this operation may not have actually made any difference to my condition. There has been no discernable change in my symptoms. I have had pretty much constant, painful cramps since the surgery, along with the usual sudden (and delightful) 'endobelly' inflation, which is debilitating both mentally and physically.

What if nothing changes? That is hard for me to think about and will be even harder to deal with. At the same time, I keep reminding myself that, whilst the external damage is minimal, there has been some pretty hardcore internal frying which will take longer to heal and so I won't know for sure how much has changed for another couple of months or so. All I can do is wait, take the painkillers and try to take the best possible care of my health.

(I am told that this does NOT involve drinking copious amounts of gin. Furious).

Useful links:

Endometriosis UK: The leading UK charity dedicated to providing information on endometriosis and support for those affected by endometriosis.

The Million Woman March for Endometriosis: Information and resources about this international event.

Endometriosis: A Key to Healing and Fertility through Nutrition: Excellent book by Dian Shepperson Mills offering safe and practical nutritional and healthcare advice.

Celebrities with endometriosis: via Endometriosis: My Life with You blog.

This post was previously published on my blog.

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