Article

Endometriosis

Endometriosis. Ever heard of it? Once, not long ago, very few doctors believed it existed. Now endometriosis is listed as the second most common gynaecological condition and it is thought that it affects approximately 10% of women at some stage during their menstruating years. However, it is still grossly under diagnosed and virtually no research has been done into its causes or potential treatments.

Endometriosis can have an absolutely devastating effect on its sufferersÕ lives. Every case is different. Some women are lucky and only suffer a few days of pain a month, or just with certain activities such a jogging or sexual intercourse, and are capable for the most part of living entirely 'normal', active lifestyles. Some women have no endo symptoms and only discover they have endo when they start to investigate why they are not conceiving. Unfortunately, some women do suffer terribly with the condition. Judy is 35 and lives in Dorset. Here she tells her story:

"I had very painful, long and irregular periods since they first started. I thought it was normal, so I never discussed it with anyone. In my late teens after several visits to doctors who told me it was nothing I moved to the States. The doctor there found a large mass in my left side. They operated and found a large chocolate cyst (a cyst full of blood, commonly caused by endo) that had destroyed my left ovary and tube and told me that I had endometriosis.

"Back in England I was put on a variety of different hormone drugs. They all had side effects, dizziness, mood swings, but they eased the pain so I persevered for a while but as soon as I stopped taking them the pain returned. It gradually got worse until I couldnÕt drive and I was given another laparoscopy (keyhole surgery). They told me afterwards that there was no visible or active endometriosis and that I couldnÕt take any hormone treatments because of long-term health risks and side effects. My (male) doctor even refused to give me pain relief.

"The pain got worse and worse, at times I was screaming in agony. Then I read in an old book about endometriosis that laser surgery might be an option. I asked my doctor who told me there was an Ôendo freakÕ in Guildford whom he referred me to. When this doctor operated he said my pelvis looked like a battlefield, it was in a terrible mess. There was a severe infection that looked like appendicitis, an abscess, and cysts all in a mass on the right side. The infection was released and I was discharged.

"The pain did not improve. It had become constant, all the time, every day, torture. Over the next year or two I had surgery several more times in which cysts and nodules were removed but still the pain stayed. I researched into treatments and specialists and saw specialists all over Europe in a desperate attempt to find some relief. The surgeon in Clermont, France and the Prof. in Oxford are not sure that even a hysterectomy will solve my pain. It is apparently due to scar tissue from the endo and my body trying to heal itself. I get no relief and often feel suicidal with the pain.

"I have had to give up my teaching job, which I love. The pain is so severe I can't stand up or sit down, the only way to get any relief is to lie down. I cannot work at all now which is devastating. I am a confident person but now feel a shadow of what I once was."

What is Endometriosis?

Endometriosis is a condition where the cells that are normally found lining the uterus are also found in other areas of the body but usually within the pelvis. Each month this tissue outside of the uterus, under normal hormonal control, is built up and then breaks down and bleeds in the same way as the lining of the uterus. This internal bleeding into the pelvis, unlike a period, has no way of leaving the body. This leads to inflammation, the formation of scar tissue and most obviously, pain.

These deposits can also be found in more remote sites than the pelvis. They can be found in or on the bowel, in or on the bladder, in operation scars and in the lungs. In fact, the only site that endometriosis has not been found is the spleen. Once this tissue has established itself it simply stays, and because it bleeds every month, it also spreads. In more advanced cases it can join organs together making just simple movements painful and it can even ÔeatÕ through some tissue walls.

The classic symptoms of endometriosis are painful periods, ovulation pain, painful sex, and infertility, but women with the condition also report many other symptoms. These have been known to be as wide ranging as pain on internal examination, heavy periods with or without clots, irregular periods, painful bowel movement, pain when passing urine, symptoms of an irritable bowel - diarrhoea, constipation, colic, and also lethargy and extreme tiredness.

The majority of women with the condition will experience some of these symptoms, although some women with endometriosis will have no symptoms at all. The amount of endometriosis does not always correspond to the amount of pain and discomfort. It depends, largely, on the site of the endometrial deposits. Of course, all of the symptoms above may have other causes and itÔs important to seek medical advice to clarify the cause of any symptoms.

The experience

Ask any women who has endo and they will clarify that itÕs a far from pleasant experience. Extreme pain is par for the course. Women with endo who have gone on to have a child have said that the pain of giving birth is less than the pain they go through on a regular basis with their endo. As these women can testify, endometriosis hurts!

"During an attack I would be on my knees, desperately trying to stay with it, feeling like a drill was boring into my back and rectum. When this happens, no painkiller will help and you honestly feel like you are going to die. The whole of my pelvic area would be 'on fire' and it felt like something inside was about to explode. I had to try to breathe with the pain or I would almost pass out." Caroline, 35, Bolton.

"At times I have felt desperate. There is not a facet of my life that endo has not changed - my health, my fertility, my career, my relationship with my husband, my social life, holidays. It even meant I missed my own wedding reception and honeymoon." Sue, 34, Sheffield

"One night when having an attack I went to the loo and woke up on the bathroom floor looking like I had just done a round in the boxing ring with Mike Tyson. At least whist unconscious on the floor I couldn't feel the pain." Nita, 32, Lincoln

What's up doc?

What makes things worse is that the medical profession has done virtually no research into the condition and the treatments most widely available are either risky (surgery with gynaecologists who are not endo specialists, many of whom have grossly misdiagnosed patients) or often have drastic side effects (hormone drugs). Many GPs and quite a few gynaecologists still have very little idea about what endometriosis actually is and as a result it can take years of suffering before a diagnosis is made. A study in 1998 discovered that the average amount of time between the onset of symptoms and obtaining a diagnosis in the UK is 7 years. Most commonly women are told ÔitÕs normalÕ or ÔitÕs all in your headÕ. ItÕs not surprising that many women with endo end up suffering from depression. Not only is their fertility doubtful, but as symptoms worsen many are in constant pain and as a result have to give up their jobs or studies.

However, endo girls are resourceful beings, and there are now several support groups for women with endo. Many endo sufferers find their strongest source of support is through other women with endo. Even the most sympathetic husband or partner simply cannot imagine the agony of an endo attack, and as a result, on-line support groups and national networks have gradually materialised for women with endo to be able to provide mutual support for each other.

These support groups (see links) are very valuable when it comes to assessing potential treatments. There is no such thing as a perfect treatment for endo, in fact, thereÕs barely anything worthy of the title ÔtreatmentÕ at all, and some of them do have drastic side effects. By finding other women who have tried this or that, gradually archives of inside information have developed to provide women with the information that the doctors often simply fail to give.

Finally, some words of advice from women who suffer from endo to those who may suspect they have it themselves:

"If you suspect you have endometriosis, visit your doctor and ask to be referred don't let them fob you off, if you ask to be referred they cannot refuse. Stick to your guns don't let someone tell you its in your head and you cannot be in pain, It is your body you have lived with it all your life and you know what you should be feeling not them....be strong." Janine, 29, Bolton

"There are some really good websites - the NES, SHE Trust and some really good books, these will all help to find out as much as you can about endo. Specialists, unless you go private, have very little time to spend with you and explain everything you want to know so reading books and looking up the websites really helps. Also talking to other women with the disease helps enormously. There is nothing like talking to someone who actually knows what you are experiencing." Justine, 29, West Sussex