Dear Ella: What I Wish You Knew

It was June 2016 that I was first diagnosed with endometriosis. Since then I have learned a lot of things that I desperately wish I could go back and tell that young woman. If I could, these are some of the things I’d really want her to know. Some of them are personal to me, but most of them have fairly general applicability.

1) Don’t go to that doctor

I had no idea back then that there were different types of gynaecological specialities. I thought it was all much of a muchness. I was originally diagnosed and operated on by a fertility specialist. Whilst she knew about endometriosis, as any gynaecologist should, endometriosis was not her primary area. I don’t know if my increase in suffering after that operation was due to a lack of knowledge and skill on her part, her preference for surgery rather than attempting to manage the condition with medication first, or simply something that would have happened regardless of who I saw. Whichever, I wish I’d seen someone else, because when the problems arose, she was stumped and essentially told me she had no idea how to help me. Which leads me to…

2) Don’t have the surgery

I honestly thought I’d tried every medication I could to reduce my period pain and that surgery was the only option open to me now (an illusion that the abovementioned doctor did nothing to dispel). Whilst surgery is incredibly useful for many people, it was devastating for me and I wish I had been given other alternatives to at least try.

3) Find a doctor that you can trust

I don’t know if I could have done anything about this sooner than I did, because it took a while for me to realise each medical relationship wasn’t working, but I wish I had been with Dr Edi-Osagie from the start. I have yet to present a problem that he hasn’t been willing to try and beat or said something he hasn’t listened to. Previous doctors have either been stumped by my issues or decided that they’ve given me sufficient quality of life and I just need to be satisfied with that. I’m not, and neither is Dr Edi-Osagie. I trust him, and that’s a big deal.

4) Trust yourself more

Endometriosis is one of those diseases that plays tricks on your mind. There’s few visible symptoms, and people around you question and downplay your pain. This makes it very easy to doubt what you are feeling and convince yourself that you are wrong about the severity of your pain and the appropriateness of your reaction to it. The gaslighting effect is horrible and I think it causes delays in getting effective treatment. If I had had more trust in myself, I may not have had a better medical outcome, but I would have been a lot happier.

5) Be prepared for physical changes

I’ve been really struggling with body image (again) lately. Being in menopause has me putting on weight even though I’m exercising regularly and eating well (and yes, my caloric output exceeds my input by a decent margin). Between that and the swelling, I feel a bit like a pig, only without their body confidence and contentment. I wish I could brace my old self for those changes and revel in the body I had while I had it. Not just for looks, too – I’d take it for more runs just to feel the power in my legs, and lift more weights to experience that satisfying burn in my arms.

6) Do your research in the right places

Scouring WebMD for the clinical definition of endo doesn’t prepare you for what it is actually like. Even the list of symptoms is not exhaustive, and some website actually provide complete misinformation (the most common being that pregnancy or hysterectomy will cure you). The best source of information I have ever found is my local endo support group. I have learned so much from them and I should have joined and engaged the second I was diagnosed, checked if I was seeing the right doctor and being given accurate advice, and built connections with women who could help me.

7) Do better record-keeping

This is still something I could improve upon. Record-keeping on both a micro and macro level is really useful. By macro I mean having all your medical records collated and a timeline of major events (diagnoses, procedures, dates of starting and stopping medication). This makes it super easy for you and your doctors to review your history at a glance. By micro, I mean tracking your food, sleep, stress, exercise, mood and pain. This helps alert you to trends and triggers, which teaches you how to help yourself better by avoiding stuff that hurts and engaging in stuff that helps.

8) Understand that your life will change

The biggest thing I was unprepared for was how much I wouldn’t be able to do. I took it for granted that I could sit at a desk for hours at a time, walk 5km and then eat a garlicky meal with onions and beans. I took it for granted that I could shower at the end of a long day. Never did I think I’d become an occasional wheelchair user. I thought I’d be diagnosed, cured, and that was that. In fact…

9) Realise that a diagnosis is just the beginning

If you get a diagnosis and if that diagnosis is confirmed, that is not the beginning of the end. It is not as simple, sadly, as problem then solution. It is problem then several attempts at solutions and then many sub-problems, all requiring different solutions, some of which are in conflict with each other. It is not a simple journey, and while a diagnosis offers some hope, it is not a fait accompli from thereon out. I want to go back and seriously manage 25-year-old me’s expectations.

However…

10) A diagnosis is not the end

I cried the day I was diagnosed. It is scary being told that you have a disease that you didn’t know was there, even if you expected it. It is even scarier realising that you have it for life. I cannot properly convey the enormity of that. It’s not the end, though. Life may be very, very different after a diagnosis, and it may well be harder, but you also learn a lot of things about love, true friendship, your own abilities and limits, and weird medical facts. You have to change your life in a hundred annoying ways, but it does become the new normal and you learn to live with the differences. Endo is chronic but not terminal. While there’s life, there’s hope.

What do you wish you could say to your younger, pre-diagnosis self? Would you do anything differently?

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.