Secondary Conditions: Fybromyalgia

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s fibromyalgia, aka fibro, FM, or FMS.

Before I carry on, I just want to apologise for this post being a little tardy – I’ve been very sick with a nasty, persistent cold and some rather bad flare-ups, so I haven’t had any energy to spare for writing this week.  I suspect there will just be one post next week as well, so bear with me for a bit whilst I recover.

Of all the chronic conditions that people with endo often end up with, fibro is probably the one I fear the most.  The reason for that is that my endo pain is generally confined to my torso, and at worst may cause shooting pains in the legs.  Fibro is just pain everywhere.  All over.  Muscles, joints, bones, the whole shebang.  Imagine that – pain embedded in your skeleton.  It can be limited to just a few spots on the body, true, but it can also effect the whole body at once.  People who have fibro have described it to me as hellish, rendering them completely unable to move.

In addition to pain, it can cause such delightful symptoms as tingling, muscles that twitch, cramp or go suddenly weak, headaches, dizziness, generalised weakness, sensory overload, impaired concentration so bad you can hardly string a thought together (aka brain fog), insomnia, restless sleep, intolerance of hot or cold, stiffness, irregular periods, depression, bowel troubles, bladder issues and more.  Doesn’t it just sound like a hoot?

Of course, the best part is that, just like endometriosis, we don’t know what causes it, and there is no cure.  We do know that stress exacerbates it and there seems to be a link between onset and physical trauma, but not all physical traumas cause fibro and not all people who suffer from fibro have experienced a physical trauma.  We also know you’re more likely to suffer from it if you’re a woman (80-90% of sufferers are female).

Because of the wide variety of exciting symptoms, fibro can be difficult to diagnose.  There’s no conclusive test, even through surgery.  It’s mostly a case of ruling out other causes for pain.  Unfortunately, this can often result in delays of diagnosis for sufferers of fibro.

The treatment is also difficult.  Mostly, it’s lifestyle management, like identifying and avoiding triggers (difficult to do when triggers can be things like, well, moving).  Many doctors recommend physio and gentle exercise, such as water-based exercise, yoga, or tai chi.  It’s also recommended to eat well, avoid stress (lol) and get plenty of rest (extra lol). (I note that I am laughing at how they make that sound so easy, not the idea itself – lots of rest and minimising stress are important in battling any chronic condition). Unfortunately, some things that can cause flare-ups can’t be avoided, such as weather changes (yes, seriously), and travelling.

There are medical treatments as well.  Some people can get along well with panadol and ibuprofen, but others may need to resort to stronger drugs like pregabalin and gabapentin.  Like treatment for endo, it can get expensive quickly.

The connection between endo and adeno and endo and PCOS probably seemed quite logical, but why have I linked endo and fibro?  Well, because studies suggest people with endo are more likely to suffer from fibro.  We’re also more likely to get chronic fatigue, a condition we tend to have in common with fibro sufferers, and which I will be writing about next.

I live in deep admiration for people with fibro, especially those who also suffer from endometriosis.  I have a really hard time sometimes just dealing with one condition.  I know how deeply it impacts every aspect of my life, from my relationships to my job.  Fibro just seems like…what fresh hell is this?  I know how you get through it – you have to, and do you do – but I am in such awe of your strength and willpower.  Keep fighting, my friends.

Do any of my readers have fibro?  I would love it if you could share your experiences with diagnosis, treatments, and just life with fibro generally in the comments.

 

Secondary Conditions: Polycystic Ovarian Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s polycystic ovarian syndrome, aka PCOS.

What is PCOS? Well, it’s a condition whereby the ovaries become enlarged and prone to cysts. Tiny little follicles grow on the ovaries, containing partially formed eggs that rarely grow to maturity or become fertile. The body produces too much insulin and androgen (a male hormone).

PCOS can cause weight gain, excessive hair growth on the body, hair loss on the scalp, depression, sleep apnea, acne, pain, infertility , increased likelihood of diabetes, and irregular periods.  It’s a nasty disease and the side effects (wrongly) carry a lot of social stigma.

Like adeno and endo, no one is really 100% sure what causes PCOS. It does appear to run in families and is more likely to effect women who are overweight, but neither of these is a guarantee of getting it, nor are slender people with no family history automatically exempt. What we do know is estimates suggest it could effect as many as 20% of people with ovaries of reproductive age, and often goes undiagnosed.

As with any disease where weight increase is both a symptom and increases the risk of either contracting the disease or exacerbating the symptoms, doctors will urge sufferers to make healthy lifestyle choices, particularly around diet and exercise. Not for a moment will I pretend this is a bad idea.  Sufferers can achieve significant relief from symptoms with only a small amount of weight loss (which sounds a lot easier than it is when your own body is fighting you every step of the way).  However, I do urge people not to allow doctors to attribute everything to their weight and offer no other assistance. Hormonal treatments can also be an important part of dealing with PCOS, both to block and to raise different hormones.

It’s also a good idea to have a mental health professional as part of your treating team. Dealing with difficult symptoms that our society wrongly but consistently perceives as “gross” or symbolic of laziness is hard enough. Dealing with a disease that also can cause depression is an extra battle you shouldn’t have to fight alone.

Before you can start to be effectively treated, however, you need to be diagnosed. There is no 100% guaranteed method of diagnosis. Scans may show cysts on your ovaries, but you can have ovarian cysts without having PCOS. Likewise, you can have PCOS but not have anything visible on scans. You can also have blood tests that will look at hormone levels in your blood to see what, if anything, is elevated.  Like endo, though, it can just be a lot of guesswork and diagnoses are often based purely of reported symptoms.

Endometriosis and PCOS, unfortunately, often travel in packs, and it is relatively common to have both.  However, plenty of people only deal with one or the other.  I’m lucky enough not to have had to deal with PCOS. I have friends, acquaintances and possibly family members with it, and their experiences have ranged from annoying to devastating. Have any of my readers experienced PCOS? What was your path to diagnosis?  If anyone wants to write a guest post about how PCOS really feels on a day to day basis, I’d love to publish it.

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?

Pills and Thrills

CW: drug use

Does anyone else get really really annoyed at the number of side-effects doctors expect us to tolerate?  

I warn you now, this is a rant and not a useful post.

On Sunday night I was in bad pain.  I don’t really know why or what was causing it, but I knew it hurt more than I could cope with and that I needed to be at work the next day.  So I did what I have been told to do when the pain gets really bad, and took some tramadol.  

I haven’t taken tramadol in a long time because it has a habit of making me a bit whacked out.  I avoid endone for much the same reason.  Both make me spacey and sleepy but send my mind racing at a million miles an hour, leaving my super-active brain stuck in a body that feels like it is suffering sleep paralysis.  I also don’t feel that they have much of an impact on my pain levels.  The next day I feel weak and shaky.  I don’t really like either of them.  Also, they both make you constipated.

Sunday night took things to a new level.  I took my tramadol at around 9pm.  I was fine at first in terms of side-effects and went to bed with a heatpack to wait the pain out. Half an hour later I was genuinely concerned that the doctors had replaced my innocent painkillers with hardcore hallucinogens.  

I’ll preface the rest of my experience by saying I’ve never taken illicit drugs of any kind.  I’ve never even been drunk.  I have no interest in perception-altering substances, so drug users out there may read this and go, “ah, you innocent child, thinking this is bad.”  I don’t know.  My poor little mind was bending.  

By midnight I was still not asleep.  My brain had carried out a really, really detailed mediation between my cat and my dog.  I could talk to animals, you see.  I forced myself to get up and go to the loo and was swaying like a drunk woman.  I could feel the world tilting, melting and floating around me, like my foothold on the earth was tenuous at best.  

When I got back to bed, I started crying because I felt like my arms were melting into one another, and I couldn’t tell my elbows apart.  I felt like my hands were on backwards.  I was being eaten by the bed.  I couldn’t move.  I could just about articulate to my husband what was happening, and I know I sounded pathetic and barely coherent.  

I was awake, my mind racing and my body distorting, until around 4am.  It was nightmarish.  I felt like I was living the Coraline movie.  

When I woke up the next morning, my body was wracked by tremors and I was so weak I could barely hold my phone to send an email to work saying I’d be late.  I was dizzy and nauseous.  The whole day I was tired and weak, couldn’t eat properly until mid-afternoon, and was really struggling to articulate my thoughts.  I would just lose the ability to say things halfway through the sentence, even though my brain was making the right pictures.

The only thing that made my pain reduce?  Time.  And quite frankly, even if the tramadol had worked, I’m not sure it would be worth the hassle.  

I know that I’m far from the only person to experience problems with the pills meant to relieve pain.  I’m far from the only person to have horrible side-effects with something as fundamental to the treatment of endometriosis as hormonal birth control.  I consider the issues I get – bloating, abdominal pain, tender breasts, mood swings, weird cravings, reduced energy – to be relatively minor, because we are told they are common and not really worth troubling a doctor about.  

Why are we expected to have to deal with this?  Why must sick people choose between pain and suffering from their illness and pain and suffering from their treatment?  Why am I in the situation where I’m forced to call in sick, not because I am ill, but because I attempted to use my prescribed medication?  Why, if I go to the emergency department, will I be offered endone as my only option, and be kicked out as soon as I take it?  What else can I possibly do?

Gosh, I hate endo.