Sometimes I wish I was a man! (My Experience Of Endometriosis)

Member Name: Welshlassie

Product:	My Experience Of Endometriosis
Date:	10/07/09 (24 review reads)
Rating:

Advantages: Some treatments completely stop your periods

Disadvantages: Lots of pain, disturbed life, need for painkillers regularly

I was diagnosed with Endometriosis in 2001, although I'd had "bad" periods since they began, but had been told "all women get period pain - live with it!" You don't have to though - it wan't normal to have to spend the day before and the first 2 days of my period in bed, dosed up to the eyeballs on painkillers. I finally went to see my GP and asked for a referral to a Gynaecologist.
I know of many women who have been told its all in their head - It isn't, don't listen to them, it's your body and you know it best, if it hurts, there is a reason for it, find out what.

However, I go any further about this awful condition, I just want to say:
"IT IS NOT AN INFECTION
IT IS NOT CONTAGIOUS
IT IS NOT CANCER"

Endomertriosis (pronounced end-oh-mee-tree-oh-sis) is a condition that can effect any women from the onset of puberty and is estimated to affect around 2 million women in the UK alone, that's almost twice as many as those with diabetes, but most people have never heard of it.
I hope I don't scare you too much, but the thing I found lacking the most when I was diagnosed was the lack of information available to me. Not just about what it was and treatments available, but how it could effect my life.

What is it?

Endo is where the cells that are usually found in the womb are also found in other parts of the body, such as the bowel, bladder and kidneys. They can be found anywhere in the body but many in the pelvis. During a womens menstrual cycle the lining of the womb builds up in preparation for pregnancy. If pregnancy does not occur this lining is shed away as a period, however with endo the cells that have migrated to other parts of the body will also "bleed", but this blood has no means of escaping the body and so causes pain. This pain varies from women to women.
Evidence is increasing that it is a hereditary condition. I believe this as my sister is also a sufferer, although she has it much worse than myself.

Diagnosing

The only method of diagnosing this condition is by surgery usually Laparoscopy - where a small camera is inserted into the abdomen through a small incision by the belly button.
Once diagnosed you are usually told how severe it is based on a level between 1 and 4 - 4 being very severe.

It is not known what causes it and there are many theories out there, but none have been proved so I won't speculate on here.

Symptoms

Each women has different symptoms to varying degrees, but these can include:

* Pain - before, during or after periods, during or after sexual intercourse, during ovulation and on internal examination
* Bleeding - irregular periods, heavy bleeding with or without clots, old blood during periods, prolonged bleeding
* Bowel and bladder problems - pain on bowel or bladder movements, blood in bowel or bladder movements, symptoms similar to Irritable Bowel Syndrome.
* Infertility
* Extreme tiredness

Some women have all these symptoms, some have very few of them.

Treatment

There is no cure for endo, but there are many different treatments available. Unfortunately because every women is different some treatments work and some don't and it is very much a case of trial and error until you find a treatment that works for you.
Treatments generally try to help with relieving pain, reducing endo deposits, preserving or restoring fertility. What treatment you have will depend on several issues, your age, whether you already have children and the severity.

Some women are told that getting pregnant will cure them - This is not true, it may help with the symptoms for the duration of the pregnancy and breastfeeding, but it can return as was the case with me.
Hormonal treatments are one of the main methods used - because the endo cells react to the oestrogen produced by the body during a menstruation cycle, these treatments stop or reduce the amount of oestrogen produced. Some of them put the body in a pseudo-pregnancy or pseudo-menopausal state. These can all have side-effects, but for many women the side-effects are preferable to the symptoms of endo itself.

I have tried Zolodex - which puts you into a pseudo-menopausal state - meaning no periods and all the associated side-effects such as hot flushes. Unfortunately it is only licensed to be given for 6 months - in a lifetime. However it worked for me and I would happily stayed on it forever. The treatment is administered as an injection of a small implant into your stomach - don't look while its being done as the needle is huge. This can hurt and leave a small bruise, but it was worth it. Hot flushes can be alleviated through the addition of Lival (or equivalent) this can also help protect a womans bones.

Other treatments include the contraceptive pill and contraceptive injection - these put you into a pseudo-pregnancy state and can be taken in different ways.

A common way to take the pill is 3 packs at a time - thereby preventing you from having a period during this time, which is usually the most painful time for women with endo. I am now on this treatment and "touch wood" it is working for me.

There are also a variety of surgical treatments - but doctors only tend to use these after trying the hormonal treatments first.

They are usually carried out by laparoscopy (but occasionally laparotomy - which involves a larger incision). These treatments try to seek and destroy the endo deposits either using a laser or by cutting them out (excision).

As a last resort a women can be offered a hysterectomy, however this is only once other treatments have been tried and exhausted.

Painkillers of some sort are a must for all sufferers just to get you through the worst days, there are a huge variety out there that can help. Speak to your GP and/or Gynae about what's right for you and together you should be able to come up with a combination that works, remember if one type doesn't work don't despair there's others out there that might.

There are also several complementary therapies out there that can help - one of the most successful is controlling it by diet - cutting out wheat, dairy and processed foods. Although acupuncture, reflexology and homoeopathy also claim to help many women lead a much more normal life.

Infertility

One of the worst side-effects for a lot of women is the infertility and when a woman starts trying to conceive a baby is when it can come to light that they have the condition. There are no definitive figures of the number of women effected in this way. Thankfully I haven't had problems conceiving as my son is almost 2, but not all women are so lucky. IVF and other fertility treatments are an options, but it is up to the woman to make that decision for herself.

Conclusion

I still have problems, but mine is presently under control. I lead a full life, working full time, looking after my toddler son and exercising, but when I'm bad I can't do any of this and barely even struggle to get to work sometimes, but I have a good gyane and a great GP and I get through it. Bad episodes are fewer and further apart these days and I'm just hoping they continue that way.

Summary: A horrible condition that only effects women, but can be controlled if you seek the right help.