Endometriosis

Dawn Goodson - My Story

Hello everyone – please don’t switch off. This is important to me and many other women and their families.

Symptoms
Painful, heavy and irregular periods
Infertility
Lower back pain
Cramps
Fluid retention
Bloating
Painful sex
Bowel problems
Nausea
Hypoglycaemia (low blood sugar)
Headaches
Anxiety and depression
Fatigue
Diarrhea or constipation
Susceptibility to infections and allergies
Bleeding from your back passage (rectum)
As Endometriosis develops a woman’s immune system becomes more and more impaired and this can lead to other health problems. Increased research and surveys of Endometriosis patients, it is now becoming more apparent that women with the disease are susceptible to other serious health problems including:
Chronic Fatigue Syndrome (100 times more common in women with endometriosis)
Me Hypothyroidism – under-active Thyroid gland (more common in women with Endo)
Fibromyalgia
Rheumatoid arthritis
Multiple Sclerosis
Cancers – breast, ovarian and non-Hodgkin’s lymphoma

Endometriosis explained
Endometriosis affects about 1 in five women. It is a total shock to a woman when she is informed that she has this disease, that has various symptoms and no cure as of yet.

It can take many years for a woman to discover that she has the disease, and this is only found out when a Laparoscopy is carried out.

There is little medical advice, and GPs usually just prescribe the contraceptive pill, which keeps the disease and pain at bay, so many women carry on for years without realising that they have the disease.

Endometriosis occurs when cells from the endometrium make their way to the outside of the uterus and implant in various places such as the bladder, bowel, ovaries, and other areas of the pelvic cavity. In fact, Endo can implant just about anywhere in the body
It causes ‘adhesions’, which are painful sticky masses, that virtually ‘glue’ organs together.

Endometriosis is not a ‘visible’ disease, so women look fine to others, but this just because they have self trained themselves to deal with it, and they don’t want to come across as a hypochondriac – which many have been accused of. Many Endo sufferers pretend that they are ok, and try to carry on in everyday life, even though they are crying inside. Endo can affect quality of life and many sufferers take time off work, and miss out on everyday commitments.

With no cure in sight, sufferers feel alone and useless.

Endometriosis is not a ‘sexy’ disease, unlike others, so it is not talked about as openly as others.

No – it is not life threatening like Cancer or Aids, but it is not a nice thing to have, and it can affect a woman, her partner, family and friends.

So below is my story:

Periods
I have suffered from painful, heavy periods all my life, but I never complained. In fact I used to work in for an engineering firm, where one of the engineers commented one day, how happy I was all the time, and that the men never understood if I had a ‘time of the month’.

So, when I was 16, my mum took me to the Family Planning Clinic, where they said that the ‘cure’ for my painful periods was for me to take the Contraceptive Pill.

Discovering
Over the years I had a few relationships, and even though I wanted children, I never had any.
At the ripe old age of 40, I met Graham. We both wanted to have a family, and so it was not long before we started to try. This did not happen. My GP referred us both to the hospital, where we both underwent tests. Graham was ok, it was me who had the ‘problem. So after more tests and photographs taken of me, where I did not have to smile – it was discovered that I have Severe Endometriosis.

My diagnosis
Both my ovaries are enlarged, I have a cyst/tumour on one of my ovaries (it has a high blood count – what does that mean), both my fallopian tubes are blocked and scarred, and one of my tubes is stuck to my bowel. Attractive isn’t it lol.

My options
A few months ago I had key-hole surgery (oophorectomy), to try to remove my ovaries, the cyst (as it is not healthy), and maybe my tubes. Unfortunately, the surgery was unsuccessful – as in my surgeons words ‘Dawn, you are the worst case I have seen in years’.

It is important to remember that Endometriosis can return after a hysterectomy and oophorectomy.

So then I was given an option – or was I? I was told that I should have a Hysterectomy. I was devastated – not only were my hopes of having a family snatched away from me, but I didn’t feel like a woman anymore. Graham and I were offered IVF, but I am ‘too old’ to have this treatment on the NHS. Apparently the ‘cut off’ age is 36. But there is a waiting list of a few years, so even if I had been 32 I wouldn’t have been able to receive it. And anyway, would it work?


Affects on life
The toll on all of this drove a wedge between Graham and I, and we split up – as many couples do. Graham (bless him), was unable to cope. In his words ‘Dawn is always happy go lucky and is supportive to family and friends – so nobody including me can cope now that she has a problem’. ‘She makes jokes about it, even though I know she is heartbroken’.

Well, it’s now December 2007, and i'm not coping very well anymore. And family and friends avoid the subject, because nobody knows what to say. I find it hard to be ‘happy go lucky’ me, because that is not how I feel on the inside. Yes, I know there are people much worse off than me, and I am not the sort to feel sorry for myself, but this has really affected how I feel inside. People still say to me now 'are you better', and I just say yes - but i want to scream 'no I am not - I have a disease!'.

Cancer related?
It has been stated for years that Endometriosis was not Cancer related, but latest studies show that it is. However, more estrogen is produced and abnormal cell growth caused by endometriosis may eventually cause ovarian or other cancers over a woman's lifetime.

The system
I feel angry and let down by ‘the system’. Why oh why is this disease not highlighted so much more? There is no explanation of where it comes from, and there is not a cure. But if it is caught early it can be treated to an extent.

But if I have had Endometriosis, since I was say 15 or 16, then it is such a shame that I did not find out before.

About one in every five women has this disease, so it should be investigated more openly.

I know a lot of you have heard of it – but do you really know how much this disease can shatter a person’s life, hopes and dreams?

I myself, had heard of it, but like most other people, I didn’t take any notice. Now I have it – and I am angry and upset that it Endometriosis can return after a hysterectomy and oophorectomy.

This is just my story – and I am still learning, and I want to learn more as I now have a passion to help others – it would help if more people took the time to find out about this terrible disease, that cant be seen to the outside world, but can have devastating effects on those who suffer from it and the loved ones who surround them

Dawn

December 2007

UPDATE: September 2009

Well, had my hysterectomy. And have tried to come to terms with never having my own child. I know there are people worse off than me, but I will always have an emptiness in my heart.

It does make me a bit mad, when I hear stories of women who get help for all sorts of problems, and ones who have a few children in care, and yet get pregnent again. I didn't receive such help!

Anyway, every cloud has a silver lining, and I have been blessed to meet a lovely man, who has a great son, who I get on very well with.

Dawn