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National Health Service

As you know I’ve always been an advocate of the National Health Service.  I think it’s a fair way to allocate funding for illness and a sign of a civilised society.

Let’s talk about funding for a health service for a moment.  I’m originally from the US but now live in the UK.  I currently hold down a decent full-time job.  Last year I had 3 days off work sick.  I am a productive member of society.  Technically speaking I ought to be able to afford any sort of health care payments.  So why do I prefer NHS?

I dislike ambiguity in my life.  For example, Helios and I have a mortgage that we pay every month.  When we took out the loan, I insisted that we have a repayment mortgage at a fixed percentage rate: I wanted to be sure that we know what the outgoings are every month and that the flat would be ours at the end of the term.  A state-funded health care system provides me with the same concrete certainty: I know what I must pay every month and I know that my policy will cover me throughout my life at a rate that I can afford.

I am not at the mercy of an insurance company that can change my status from “healthy” to “unhealthy” on a diagnosis and therefore require me to pay more in premiums than I cannot afford.  Although I am a productive member of society, I have a number of chronic illnesses.  Since 2005 I have had three laparoscopic surgeries and a raft of prescriptions to treat PCOS, Insulin Resistance, Endometriosis, Depression and lichen planus: a stress-related skin condition.  Had I remained in the US, I cannot imagine being able to afford adequate healthcare despite the fact that I am healthy enough to be a productive member of society.

A state-funded health service ensures that everyone has the health care they need in a reasonable timeframe.  People who are less healthy are not penalised for their situation.  Everyone pays what they can reasonably afford.  Everyone is covered no matter what their condition.  It’s concrete coverage.

A state-funded health service ensures that my money isn’t going to greedy corporations.  I compare insurance companies to banks: they’re only out for themselves.  How can anyone afford adequate healthcare when insurance companies are essentially middle-men who get paid to ensure sky-rocketing prices?

In the National Health Service there are no hidden extras: I go to the doctor when I need to, as often as I need to and walk out the door after the appointment.  No need to stop at reception and get out my credit card.  I go to the pharmacy and pay a flat fee for each of my prescriptions.  When I compare this with the US system, many insurance policies require patients to call to authorise appointments and treatment and, to add insult to injury, only cover a percentage of treatment.  To my mind, what is good for insurance companies is bad for patients.

The last time I mentioned the NHS I had a number of volatile comments.  I was surprised at the venom I instigated: as if I didn’t pay for healthcare.  Please remember that I pay for my health care.  I pay my taxes.  My country has cut out the middle-man of the insurance industry and my taxes go directly to the NHS.  I do not begrudge paying taxes when I know that my tax money is funding projects that I am happy to fund: the NHS is at the top of that list.  Thanks to the National Health Service, I am not over-burdened financially and am a successful member of society.

I think the US system is fundamentally flawed.  How would I have coped with all my health problems if I had to pay a bill on top?  It’s an extra stress that those of us with chronic illnesses do not need.  Please remember that I have illnesses.  I didn’t ask for my health problems.  Thanks to my steadfast National Health Service, I will remain a positive member of society for many years to come.

Foxy

Endometriosis Treatment: Birth Control Pill

I don’t think any treatment for endometriosis is worth its weight in gold but this one works for me.  I take several pill packs back to back.  My last cycle was nearly 12 weeks between periods.  The theory is that the fewer periods I have, the less pain I am in.

Plusses

The theory is fairly accurate.  I have a fantastic time when I feel normal.  I don’t live in the constant dread of pain.  I have it on good authority that I can leave it as long as 6 months between periods.  On the same theory, the fewer periods I have the better love life I have.  Because I have so many weeks between periods, my hormone levels are regular and I don’t have too many weeks where I need to take Milk Thistle.

Because I take birth control, I can plan when I have a period and ensure that my periods occur at the most convenient time for me: I can organise my periods around my life instead of my life around my period.

Minuses

My body periodically demands a period – meaning I have PMT and then spotting for a week or so before I go back to feeling more human.  Also the bloating is hard to hide.  I do spend a lot of time feeling a bit like a beached whale.  The longer I take the birth control, the more days I need to take Milk Thistle for PMT.  I also experience bloating and a right ovary that burns regularly.

It’s not ideal by any stretch of the imagination.  Ideal would be take a tablet and all the pain goes away totally.  However, I would tolerate another surgery if it meant that all the endometriosis would be completely eradicated.

Endometriosis is a nuisance because different treatments work for different women so just because something works for me (or rather I can tolerate this treatment plan) doesn’t mean that this will be good for you.  However, you have to know about all the options before you can try things that work for you.

Have a pain-free tomorrow!

Foxy

Treatments for Endo: The Mirena Coil

The official line from my favourite informative website:  http://www.endo-resolved.com/treatment.html

“The Mirena Coil – The Mirena Coil is used by some doctors to treat the symptoms of Endometriosis by reducing the amount of blood flow in a woman’s periods.

The Mirena Coil is like many other types of Intrauterine Contraceptive Devices (IUD’s or coils) in that it is fitted by a doctor and remains in the womb for a fixed amount of time, after which it must be changed.

Most IUD’s make a woman’s periods heavier, but the Mirena actually makes periods lighter than usual. Because of this, it is frequently used as a treatment for heavy periods, and is now used as a treatment option for Endometriosis, for the same reason of reducing blood loss with the menstrual cycle.

It is made of a light, plastic, T-shaped frame with the stem of the ‘T’ a bit thicker than the rest. This stem contains a tiny storage system of a hormone called Levonorgestrel.

This hormone is also used in contraceptive pills. In the Mirena, however, a much lower dose is released than take the Pill (about 1/7th strength), and it goes directly to the lining of the womb, rather than through the blood stream where it may lead to the common progesterone-type side effects.

Although the IUD was originally developed as a contraceptive, the discovery that it leads to much lighter periods was seen as a bonus. Many gynaecologists now suggest the Mirena as a treatment for heavy periods if tablet treatment doesn’t work.

After 3 months use, the average blood loss is 85% less, and by 12 months the flow is reduced by 97% every cycle About one third of women using the IUS will not have any periods at all. There is no ‘build up’ of blood, because the hormone in the IUD prevents the lining of the womb from building up at all.

Negatives of the Mirena Coil

There are many who feel that the Mirena Coil is very unsuitable as a treatment for Endometriosis as this particular type of Coil increases the risk of developing ovarian cysts.

It is the use of synthetic Progestogen hormones used in the coil that increase the chance of benign ovarian cysts. This is more common with the higher hormone levels associated with the progestagen-only pill. Overall the risk is about 3 times higher. The device could also lead to other complications of infection in the womb.”

As informative as this is, there are no mention of the possible side effects.  Details of this can be found here: http://www.netdoctor.co.uk/medicines/100001706.html

“Medicines and their possible side effects can affect individual people in different ways. The following are some of the side effects that are known to be associated with this medicine. Just because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.

Very common (affect more than 1 in 10 people)

  • Change in menstrual bleeding, such as spotting, lighter bleeding or stopping of bleeding.
  • Development of fluid filled sacks (cysts) in the ovaries.

Common (affect between 1 in 10 and 1 in 100 people)

  • Depression.
  • Nervousness.
  • Headache.
  • Decreased sex drive.
  • Abdominal pain.
  • Nausea.
  • Acne.
  • Back or pelvic pain.
  • Painful periods.
  • Breast pain or tenderness.
  • Vaginal inflammation or discharge.
  • Weight gain.

Uncommon (affect between 1 in 100 and 1 in 1000 people)

  • Mood changes.
  • Abdominal bloating.
  • Migraine.
  • Hair loss or hair growth.
  • Skin reactions such as rash or itching.
  • Pelvic inflammatory disease.
  • Inflammation of the womb.
  • Inflammation of the cervix.
  • Excessive fluid retention in the body tissues, resulting in swelling (oedema).

Rare (affect between 1 in 1000 and 1 in 10,000 people)

  • Perforation of the womb.

The side effects listed above may not include all of the side effects reported by the medicine’s manufacturer. For more information about any other possible risks associated with this medicine, please read the information provided with the medicine or consult your doctor or pharmacist.”

OK so far?  Now it’s worth speaking to people who have had experience with the Mirena Coil – if only to know things that the doctors may have failed to mention.  For instance, I would recommend taking a paracetamol before your appointment for insertion.  While I didn’t find the experience as bad as my endo pain, the pain was significant enough for me to mention to friends who are considering the coil.

Ultimately, my experience with the Mirena Coil was less than satisfactory.  I had one inserted and it twisted my bowel in two places.  Within just a few months I was having another surgery, partly for my polycystic ovaries and partly to untwist my bowel and partly to remove that awful coil.

I know the coil feels a lifesaver for some.  Knowing what I know now, I probably would have tried the thing again in desperation for relief from my endo pain.  However, if you are aware of the risks involved, you are more likely to demand the correct treatment in your follow-up appointments.  Information is vital.  Don’t make decisions in haste.

Wishing you a healthier tomorrow

Foxy

Hysterectomy not cure for Endometriosis

I just love this website: http://www.endo-resolved.com/hysterectomy.html ! It has a common-sense approach to many of the questions I have about endometriosis.  Today’s topic: endo and hysterectomy chosen specifically for C’s sister.  Please see below:

“For many women, a total hysterectomy is advised by their doctors if they have severe Endometriosis. These women are hopeful of gaining relief from the pain and symptoms of this disease by having a hysterectomy. This advice is fuelled by the thinking that if you remove the diseased organs then you will remove the disease. This is not the case.

It is known that the implants, and the evidence of Endometriosis can be found all over the pelvic cavity. So removing the uterus and ovaries will very often leave some of the disease behind. Some surgeons will attempt to remove the disease which is scattered around the pelvic cavity, as well as removing the reproductive organs. But even so, this can still leave undetected or microscopic implants behind.

Some women as young as their early 20s are opting for a Hysterectomy as a means to gain relief from Endometriosis. It is doubtful whether these young women are aware of the possibility of a return of the disease. Then there are the problems of dealing with a surgically induced menopause at such a young age. These women will be prescribed synthetic hormones (hormone replacement therapy) for years, only to have to deal with all the side-effects they can bring.

There are many reported cases where a woman has had a total hysterectomy (removal of uterus and ovaries) as treatment for Endometriosis, only to be given hormone replacement therapy. This can encourage the disease to flare up again, because estrogen is part of the hormone replacement therapy, and endometriosis feeds on estrogen. Of course hormone replacement therapy is prescribed to replace the hormones that are lost because of the removal of the ovaries. This begins to turn into a vicious circle. So hysterectomy is not the answer for Endometriosis no matter what stage the disease is at.

Why is this situation allowed to continue? There are many newly qualified gynecologists, surgeons, and doctors who are still taught that the only way to ‘cure’ Endometriosis is either through pregnancy or menopause. So, drugs are prescribed to try and induce a woman’s body into a state similar to pregnancy or menopause, and if that does not work, then cut the disease out.

Firstly the ‘cutting out’ is done by remedial measures to try and cut out the growths, lesions, and implants. As a last resort the whole lot is taken out and women are mistakenly advised to have all their reproductive organs removed with a total hysterectomy.

There is plenty of information that these doctors could use to alter their methods of treatment, but there will be a myriad of reasons why this does not happen.

Endometriosis after Hysterectomy

If you are a woman with Endometriosis which is severe, and have been advised to have a hysterectomy, then please be advised that this may not be the correct path to take. This may not remove the symptoms. It is not a guarantee to remove the disease. It is not a guarantee that Endometriosis will not return. So why go through the agony and risk of such a serious procedure. There are many women who have gone down this path and have had a total hysterectomy to try and be rid of Endometriosis, and many of these women have seen the disease return.

The alternative here is to improve your general health so that you have a better chance to fight this disease. You can keep your body intact, maintain your reproductive function, and retain the natural chemistry and balance of your body.”

As for me, at one point I was so desperate for an end to pain that I begged my gynaecologist for a hysterectomy.  Begged!  I’m grateful now that I was denied.  While I still regularly battle with my symptoms, I’m reasonably healthy and working towards only having a period four to five times a year.  I may have to demand several more surgeries to clean out the worst of the endometrial cysts before I’m through, but at the moment I am in control of my life and my pain.  I try to ensure that I only experience pain on my terms and I have all this while maintaining a fantastic intimate life with my husband.  Unfortunately I will never know what life in a “normal and healthy” body is like but having control over my pain while still feeling like a woman is, I know, the best I can achieve without a cure.

Wishing you all a healthy tomorrow!

Foxy

Support our Endo Sisters

There are so many things that are difficult about endometriosis: the length of time to diagnosis, the difficulty in adequately expressing the pain symptoms, and the fatigue involved in fighting the pain and carrying on with normal activities despite agony.  I would have thought that it would be painfully obvious if you see a friend who is doubled up in agony that you bend over backwards for her but some aren’t so lucky.

On twitter I’ve met a number of women who are lucky enough to have fantastic support of family and friends – we have a non-stop supply of hot water bottles, as well as prescription anti-inflammatories and painkillers.  We stay in bed safe in the knowledge that our household chores are being taken care of for the day.  We are given the time and space we need to recover.

However, not all are so lucky.  For those who suffer with us, I know that our pain may seem a nuisance: there she is again, folded into the corner like a Chinese fortune cookie.  She’s unable to take care of herself again and it’s a nuisance to have to pick up the pieces all over again.  Because we are not bleeding profusely from the eyes, it is not obvious to the rest of the world what our pain can be like.  In short, it’s all too easy for others to think that we’re lazy, self-centred or attention-seeking.  Please let me assure you, as much of a nuisance it is for people we live with, it’s worse for us!

Endometriosis, if I haven’t said it enough, is a chronic illness with no cure.  I am one of the lucky ones: I manage my pain so that I’m only in agony for two days per cycle.  Because I run my birth control pills together, I only have a period once every 8 or 9 weeks.  Despite my careful management, my pain scores between 8 – 10 on the Mankoski Pain scale for two full days each cycle.  For those of you who are unfamiliar:

Mankoski Pain Scale

0 – Pain Free

1 – Very minor annoyance – occasional
minor twinges. No medication needed.

2 – Minor Annoyance – occasional
strong twinges.
No medication needed.

3 – Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 – Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 – Can’t be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 – Can’t be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 – Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 – Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 – Unable to speak. Crying out or
moaning uncontrollably – near delirium.

10 – Unconscious. Pain makes you
pass out.

Endometriosis is an illness.  None of us have asked for this.  Believe me, if there were even a hint of a cure, I would seriously consider allowing myself to be one of the guinea pigs to try it!!  That’s how desperate I am – and I’m one of the lucky ones who has had a successful surgery and only suffer a few times a year.  Sign me up!  Plug me in!  Give me that drip!  Open me up again and give me that cure!!

Is it little wonder that the incidence of depression is high for women who endure endometriosis.  Would you be able to cope if you were told that you would have to endure 8 – 10 pain for a couple of days each month?  Would you be able to cope if you were told that pain that makes you projectile vomit is merely “in your head”?  How about waiting for years for a diagnosis?  I waited 22 years for a diagnosis, is that remotely acceptable?  Is it acceptable to get a diagnosis, not after all my pain but after miscarriages and infertility?  Is it acceptable to endure surgery to achieve a diagnosis?  (Of course not!  It’s the Bloody Dark Ages!!)  Would you want the support of family and friends after you were told that the pain isn’t in your head but there is no cure and you will endure pain on a regular basis for the rest of your life?

It’s little wonder that I left my first husband, who was as much use as a chocolate teapot with medical issues.  It’s little wonder that I’ve endured depression.  Since then I’ve surrounded myself with tender, understanding friends and family.  My pain is endurable now.  I consider myself extremely lucky.  I just wish the rest of us were as well…

Take care of your sanity as well as your physical symptoms, ladies!  At least we endosisters understand your pain.

Foxy

Embarrassing Bodies – Polycystic Ovary Syndrome (PCOS)

Recently PCOS has featured a couple of times on the TV show: “Embarrassing Bodies” here in the UK.  As if having Endometriosis wasn’t bad enough, I’ve got PCOS as well.  I therefore had no problem identifying the PCOS sufferers on the programme.

As with endometriosis, PCOS can take a few years to diagnose.  In my case, I can almost understand the confusion when diagnosing: I don’t have the principal symptom of menstrual disturbance because I’ve been taking the birth control pill for so many years.  However, when I was a young teen, my symptoms included: acne (At one point I was on a course of tetracycline for my acne), a slight excess of hair growth (Hey Mom!  Remember how sensitive I was about developing a moustache when I was still in high school?!), skin tags and dandruff.  As far as I was concerned, my skin and hair couldn’t possibly be related to my ovaries!

Infertility is also a symptom and I was found to have the characteristic multiple small cysts in the ovaries during an ultrasound scan.  The three symptoms that define PCOS are: polycystic ovaries, raised male hormone levels and reduced ovulation.

Other symptoms for less lucky women include more severe male patterned hair growth and male patterned baldness.  For me, the excess dark facial hair and dark back hair were the obvious symptoms that identified the patients on Embarrassing Bodies.  I felt sorry for them and I feel I have to ask: how desperate must you be to go on national television in order to get treatment?  I don’t know why these people cannot seem to get treatment they need from their own doctors but I find it scandalous that someone would feel the need to parade themselves on national TV.  Could it be that people want to raise awareness for their maladies?  Or are they irretrievably stupid?

As with endometriosis, women with PCOS have a higher risk for other illnesses.  For PCOS these include high blood pressure, diabetes, heart disease, depression, cancer of the endometrium (uterine lining) and endometrial cancer (uterus).

While I’m not overweight, obesity is associated with PCOS.  I also have insulin resistance (which I regularly call prediabetes for ease of understanding).  Women with PCOS are at risk of developing type 2 diabetes – particularly if we have a family history of diabetes.

Like endometriosis, there is no cure for PCOS and treatment is normally directed to manifestations of PCOS: I am on a PCOS diet and may be prescribed with Metformin (Glucophage) should my insulin resistance symptoms worsen.  For women with particularly low oestrogen levels, they are given HRT patches.  Unfortunately for me, it was the HRT patches that worsened my endometriosis symptoms and ultimately made me beg for my third laparoscopy to clear the growing endo.  Balance of hormones is, for me, the trick that I’ve had to work to achieve.

Finally, like Endo, PCOS is frightfully common.  Research studies of women who had an ultrasound scan of their ovaries found that up to 1 in 4 women have polycystic ovaries.  Many of these women were otherwise healthy, ovulated normally and did not have high levels of mal hormones.  It is thought that up to 1 in 10 women have polycystic ovary syndrome (i.e. at least two of polycystic ovaries, raised male hormone levels and reduced ovulation) but it is thought that these figures may be higher.

Wishing us all a healthier tomorrow!

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