The Selfishness of the Sick

There’s a weird thing that you experience when you’re chronically ill that you just don’t feel when you are healthy.  That’s the sensation of feeling selfish for wanting to be healthy.

I’ll try and explain.

When you have a cold that won’t go away and its really bad, you go and see the doctor, because you expect, quite rightly, that a cold should clear up.  After all, healthy is your normal state and it is to that state that you would like to return.  You don’t feel selfish for wanting to be healthy again, and that is absolutely as it should be.  The doctor doesn’t imply that you should just learn to deal with being sick better, or suggest that maybe you should just settle for a less bad cold than what you have because after all, it could be worse.  They listen, they give you your antibiotics, and you generally don’t leave feeling that you are being silently judged for wanting to be rid of your cold.

However, when you are chronically ill, it’s a bit different.  First of all there is the adjustment stage, where you have to learn to accept the fact that you will never be healthy in its true sense again.  That’s a topic for another post, because it really deserves a proper article.  Even when you’ve adjusted your own expectations, though, you have to deal with the expectations of the medical profession.

When it comes to endometriosis, a lot of doctors (not all, but too many) leave you feeling like you are asking for too much.  Hospitals are the worst at this – they just want to get you to a point where they can turf you back out with a pocket full of endone and not be their problem anymore.  Contrary to what you see on House or Scrubs, there is rarely any follow-up, insistence on solving the problem or finding a miracle cure.  Hospitals won’t keep you til the pain has reduced enough for you to walk easily or return to work.  They just wait for you to say that the pain seems to be reducing slightly, and you’re gone.  I know that hospitals are underfunded and understaffed, but it really makes you feel like a massive burden rather than someone with a right to health, or even a life without constant pain.

Private gynaecologists don’t have that excuse, but they do it too.  I’ve been told that I should expect to live the rest of my life with a base level of pain at 4/10 every single day.  At my last gynaecologist, I raised an ongoing issue that was causing me pain and inconvenience and he just seemed utterly uninterested.  After all, I could walk, couldn’t I?  What is worst for me is the silent undercurrent that seems to say “Why can’t you settle for what you have?  Why isn’t this good enough for you?”  It makes you feel naive and worst of all, selfish.

It isn’t enough for me, though.  I’ve had a great experience lately with Zoladex, a subcutaneous implant that dissolves over time and puts you into artificial menopause.  It has effectively ended a three-month flareup during which I could barely work.  At my last consult with him, Dr Edi-Osagie asked me if simply staying on the implant and avoiding surgery was an option for me.

I did seriously consider it, but in the end, I decided to pursue surgery anyway.  This is for a few reasons:-

  1. Zoladex has been a big improvement on where I was, but my quality of life is still nowhere near what it was prior to my first surgery;
  2. As long as I’m on it, I can’t conceive, and whilst I’m not in any rush to have a baby I do want the option;
  3. If the surgery is successful, I can come off all of the artificial hormones I’m on and let my body go back to normal, which is something I haven’t had in ten years;
  4. Zoladex and the accompanying hormone replacement therapy is expensive (about $160 a month for both);
  5. Being in menopause does have some not-so-great side effects, such as hot flushes, an increase in peach fuzz all over my face, and messed up sleep patterns;
  6. If I don’t take the opportunity to have this surgery, I may never have the chance again, and I will regret that forever.

I felt rude, assertive, guilty and incredibly selfish saying to Dr Edi-Osagie that near enough just wasn’t good enough for me.  However, he acknowledged my concerns and was so supportive of my decision, just as he was in my first consult.  I cannot recommend him highly enough.

It is really hard, asking for more.  Previously being beaten down by the health profession and being socialised as a woman against being assertive, which society reads as bad and bossy, as well as against being selfish, makes it really hard.  Women are taught to be passive and self-sacrificing, and sick people are told to be patient and grateful for what we have.  However, the risk has totally paid off for me.  Even if this surgery achieves nothing, I can fall back on the Zoladex, something I wouldn’t have if I had settled for my previous gynae’s advice, just like I wouldn’t have had the improvements in my health that he gave me if I had stuck with the advice of the two before him.  I now have a specialist who is supportive, validating and proactive.

So, if I can give one piece of advice, it is this: be selfish.  Ask for more.  You should not have to settle for “good enough” when it comes to your health.  In the end, you may have to, but don’t stop trying as long as you have the resources to do so.  It is your health.  It is your quality of life.  You are allowed to be “selfish”.

The Stages of Endometriosis

If you’ve just been diagnosed with endometriosis, you may have been given a number along with it.  That’s because, broadly speaking, endometriosis can be categorised into four different stages, conveniently if unimaginatively labelled Stages 1 – 4.  It’s a system first used in America that is now recognised internationally.

I’ll explain what these stages are in just a sec, but first I want to highlight the most important thing about these stages –  THEY ARE NOT AN INDICATOR OF HOW BAD YOUR SYMPTOMS ARE.  I’m normally the first to complain about doctors dismissing you, but if a doctor says that you only have Stage One endometriosis don’t see that as them saying your endometriosis isn’t bad.  I only have Stage 2 confirmed and Stage 3 suspected, but my pain can be absolutely crippling.  Others may have Stage 4 and have practically no symptoms.  Someone with only Stage One may be in far worse pain than me.  Endometriosis is a truly wacky disease that makes no sense whatsoever, but it is really important to remember that you should not measure your pain by what stage you are diagnosed as having.

What stage your endometriosis is at refers to two things:- the spread of the lesions over your organs, and the depth those lesions are embedded to.  It can also include the severity of any scarring or adhesion, both of which can cause additional pain without actually being endometriosis in the strictest sense.

A quick word on the lingo I’m going to use below:-

  • Adhesions – where two organs become stuck together.  This usually happens because there are rough patches on the organs so they can’t slide against each other like they should.  This is common after surgery or where something (like endo) changes the texture of the organs).
  • Scars – when bits of endometriosis are removed or die back, they can leave behind scarring.  This is another thing that can lead to adhesions because scars roughen the surfaces of the organs.
  • Lesions – the little lumps of endo.  I think of them almost like pimples, with a visible head and a body that may be either shallowly or deeply embedded into the lining of whatever they are on.

Stage One (aka minimal) endometriosis is characterised by little bits of endometriosis here and there with no or very few scars and adhesions.  Generally endometriosis at this stage is confined to only a few areas, usually only in the pelvic cavity rather than on other organs.  The endometriosis lesions are generally only shallowly embedded at this stage.

Stage Two (aka mild) endometriosis starts to get a little more dramatic, with endometriosis lesions spread over a wider area, including the ovaries and the back of the uterus rather than just the upper portion.  The lesions are still generally only shallowly embedded.  There may be some adhesions but generally all the organs will be moving relatively freely.

Stage Three (aka moderate) endometriosis takes a turn for the worse, with multiple bits of endometriosis spread over a wide variety of organs.  The lesions can be deeply embedded in the lining of the pelvic cavity and the organs, and there may be significant adhesions and scarring.

At Stage Four (aka severe), the organs may be warped and distended by the endometriosis and the fallopian tubes may be severely impacted.  Organs may be stuck together at multiple points or twisted.  The lesions are deeply embedded and running amok over whatever they can latch their evil little hands onto.  Organs may be seriously scarred.

Knowing what stage you are at can be handy purely to know where the endometriosis might be and what your organs might be looking like.  Mine are largely where they should be, moving against each other smoothly, and the right shape.  My last surgeon showed me some comparative pictures of some endometriosis at Stage 4 where the ovary was totally adhered the bowel and twisted around on itself.  It was messy.  There were really visible lesions everywhere and the whole thing just looked awful.  My insides looked quite neat and tidy by comparison.

However, it is important that you don’t define your endometriosis purely by its stage.  As I said above, the stage you are at is absolutely no indicator of the symptoms you may have or the level of pain you will endure.  Further, you may have endometriosis that doesn’t fit neatly into any category.  For example, mine is probably on my bowel as well as my uterus and my lesions are apparently relatively deep, both of which would indicate that I have Stage Four endometriosis.  However, I have no adhesions, the lesions are tiny and barely visible, and the stuff on my uterus is confined to a relatively small area, all of which are Stage Two characteristics.  These stages are not the be all and end all of endometriosis description.

Hopefully that goes some way to demystifying what these stages are (if, indeed, you were mystified by it).  What stage do you have?  Did your doctor explain to you what that meant?  Did they explain to you that it had no bearing on your symptoms and pain?  Let me know in the comments.