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Endometriosis UK

I’ve been baking cookies in exchange for donations to Endometriosis UK at my office.  Here’s why we all ought to support Endometriosis UK.

Endometriosis is a chronic illness that effects between 3% – 20% (these vast differences can be found on a number of different reputable websites) of women and, unlike cancer, is an illness that most only learn about upon diagnosis.

Diagnosis can take anywhere between 5 and 20 years to achieve and always needs to be confirmed with surgery.  In waiting for a diagnosis, women endure terrible pain and are told that it’s in their heads or that it’s “just cramps” – making us assume that vomiting from pain is entirely normal.  Endometriosis pain can range from minor discomfort to passing out entirely from pain.  Needless to say, some find it hard to hold down a job if they’re vomiting from pain once a month.

There is little justification for waiting even 5 years for a diagnosis – let alone 20!  As an endometriosis patient, I would be most grateful to know that women can start to get effective pain management as soon as possible.

After diagnosis we don’t have much to look forward to; we have to settle for pain management treatment that is not entirely sufficient.  Of course, I would prefer that everyone who has a diagnosis immediately is given a tablet and given a cure but as that dream is but a pinprick of light in the distance, what I would really like for now is more recognition.

With recognition comes more research: doctors cannot research diseases that they are not aware of.  With more research comes better pain management, the confirmation of where this disease comes from and, ultimately, a cure.  As with everything else in my life, I know that a tablet with a cure will never come without the rest of the process working – and recognition is the first step.

Believe me, it is hard to know that we are still only at the first steps of the process.  However, don’t forget those of us who suffered with no hope of a diagnosis.  In the dark days when women’s health was of no interest to doctors, women like my maternal aunt would sit in the bathroom and cry for her whole period.  I have no idea if she has endometriosis but, based on anecdotal evidence, I have to admit that I believe she does.  Back in the day women like my mom were told that getting pregnant would cure their symptoms only to have a diagnosis of endometriosis when she had her hysterectomy – many many years after symptoms start.

It is my hope that our endo-daughters and granddaughters have better luck with the medical establishment than those of my mother’s and my generation!  Perhaps they will look back at us and think “How frustrating it must have been for them!”  In order for them to have a brighter future, we must do what we can to raise awareness now.

Endometriosis UK works hard to raise awareness of a debilitating chronic illness.  In the fight against Cancer, we all know to examine ourselves regularly for lumps and tumours, we all know to eat at least 5 portions of fruit and vegetables a day, and we all know to check and double check moles for any changes.  We have a long way to go even before all doctors recognise the agonising symptoms of endometriosis!  We have a long way to go before we get an accurate test for endometriosis as currently the only effective diagnosis is surgery!  We have a long way to go before we know what may prevent endometriosis!

Endometriosis UK provides an invaluable information service to women with endometriosis through helplines, chatrooms, local groups and an email service.

By the time we are diagnosed we’ve been living with crippling pain for years and just the act of achieving a diagnosis creates a number of strong conflicting feelings: vindication that the pain isn’t just in our heads, sadness that we aren’t normal after all, shock that our lives will indeed have to change in order to more effectively cope with pain, guilt that we will have to continually rely on friends and family as there is no cure, and despair at the loss of dreams that are simply unachievable now that there is no cure for our unending pain.

The information service provided by Endometriosis UK helps us cope with the conflicting emotions that we continually experience.  Chronic illness has an effect on every part of a patient’s life.  I may not need to remind you that I consider the diagnosis of my chronic illnesses was part of the catalyst that led to the crumbling of my first marriage.  My ex-husband was unable to comprehend my health problems: he preferred to focus on himself just as he had through the rest of our marriage.  It was when he was unable to support me that I believe I finally began to succumb to depression.  The sad fact was that I was able to support him in his life but he was woefully incapable of supporting me.  Endometriosis was not the only problem between us but it was certainly a factor that led to our divorce.

We’ll never get a cure unless we start to get as many doctors working for us as they do for better known illnesses.  Until then, we will need Endometriosis UK for moral support that we may not be getting at home.

Anyone want a cookie?

Foxy

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More Manchester Fun

A work colleague suggested that I take the afternoon off work and come toManchesteragain to see a testimonial game for Gary Neville’s retirement.  Before the days when a professional footballer earned more money than was really sensible, a testimonial game was given for retiring players and the proceeds went to the players.  These days the games are more symbolic and proceeds raised go to charities.  I couldn’t pass up the opportunity to go.  Helios unfortunately was unable to get the time off and I really missed him on the night.  I’ve only ever been to Manchester with Helios so in a strange way I felt as if he was with me even though he was still south of London.

However, in some ways it was nice that he had to miss it because my work colleague became a friend over the evening…  It takes just under 4 hours to get there and back from where we live so on the way to the event I heard her life story and on the way back I told her my life story.  Luckily she’s not the sort to judge and the time was spent simply reliving the old days.

At Old Trafford, Gary Neville started playing for the club in 1995 and many of his old team mates came to play for his retirement game.  Of note, David Beckham played and still has a bit of the old magic.  Wayne Rooney scored the only Man U goal but we lost the game: 1 – 2 Juventis.  As it was a friendly, the current big names were there but they didn’t play for long as the final game of the football season is soon…

It wasn’t quite 2:00 a.m.when I got home and I was still so excited about the day that I had a hard time getting to sleep.  I had a final visit to the bathroom at 2:45 a.m. so I know I got about 4 hours sleep last night.  Therefore tonight will be very swiftly to bed!  I’m making fish and chips with peas and will go to bed almost immediately afterwards.  No point in being a martyr and staying awake just to be grouchy with Helios, is there?

In other news I passed the eight week mark without incident.  I am not having any spotting and am not in pain.  I’m still suffering a bit of discomfort with my right ovary.  It’s not painful but I can feel a slight pulling on the inside every so often – if I’m stretching for example.  It feels as thought there’s a stitch in there that doesn’t give me any symptoms until I try and manoeuvre it free.  It reminds me slightly of when I’ve had a recent surgery and I’m trying not to move a certain way.

The other news is that my recent biopsy results came back completely clear.  I’m scheduled in for another smear test in September but I figure that’s only a good thing that they want to monitor me closely.  With any luck I’ve dodged The Big C totally!  Touch wood.

Foxy


 

Not just Endometriosis but also DES

I’m showing my age now.  Between the years of 1950 and 1975 in the UK, women who had had miscarriages were prescribed diethylstilboestrol (DES).  DES is a synthetic oestrogen.  Unfortunately it had several side effects that were unknown or ignored at the time.  Those of us who have heard of DES sometimes refer to it as the “hidden thalidomide”.

The side effects include an increased risk of breast cancer in the mothers (the women taking the drug).  The resultant children have a higher risk of fertility problems, pregnancy complications, an increased risk of testicular cancer for the baby boys and an increased risk of vaginal cancer (CCAC) for the baby girls.

The sad fact is that the increased risk for clear cell adenocarcinoma (CCAC) was discovered in 1971 but the drug continued to be prescribed for another four years in the UK.

Mom has endometriosis.  Her symptoms weren’t as severe as mine.  Her endometriosis was discovered during her hysterectomy – she was in her 50s.  I think I’m right in saying that her hysterectomy has helped the few symptoms she had.  (This isn’t the case for every woman with Endo!  Bearing this in mind, I’m not begging for my hysterectomy just yet.)  For the record, she had her hysterectomy when doctors suspected she had cancer – it was the only time I’ve thought “Thank God it’s only Endometriosis!”

Bearing in mind endometriosis is a life-long problem for a woman, I suspect Mom’s endometriosis was the reason for the miscarriages she suffered before I came along.  Instead of looking for endometriosis the medical professionals in 1970/71 gave Mom DES to prevent another miscarriage.  I was the result.

I remember when Mom told me about her exposure to DES – she was terrified that she may have inadvertently hurt me.  My first reaction was “Well, if you needed the DES, then I’m grateful you took it!”  Now I’m angry that those idiots in white coats caused my mom distress.  I’m also angry at them for thinking that they’re above any ramifications that arise from their tinkering with women’s bodies!  How bloody dare you prescribe a drug to a pregnant woman without knowing the long-term risks!  Did you take the Hippocratic Oath?  How could you think that you were “doing no harm” if you didn’t know the risks?!?

If you have questions – check out the DES Action UK website at http://www.des-action.org.uk/des.html.

Foxy