Decisions, Decisions, Part III: Medical Treatment

TW: weight gain/loss, disordered eating, suicide, depression.  

I apologise for my delay in posting, dear readers.  Yet another cold has been kicking my backside.  

I am not a doctor.  Nothing in this post should be considered to be medical advice.

I know for sure that I am not the only endo-haver out there who has had a medication, experienced horrific side-effects, and decided that it simply isn’t worth it, or had second thoughts about whether they should have surgery or not.  These days, I’m relatively confident in making my own decisions about medication and treatment, occasionally in defiance of doctor’s orders.  However, for younger, less confident, or less experienced people, this might seem a very daunting decision,  so I want to write a bit about how you make it.

First, let’s talk about medication or surgery and whether or not you want to take it/have it or stop taking it.

If your doctor is suggesting you go on a new medication, you should ask the following:-

  1. What do you expect the medication/surgery to do? (e.g. reduce pain, remove pain, increase fertility, etc)
  2. How does the medication/surgery work? (e.g. by blocking nerves, by slowing endo growth, by changing hormone levels, removing endometrias)
  3. What are the likely side effects?
  4. What are the possible but unlikely side effects?
  5. Which side effects should I just deal with, which should I see a doctor about, and which should I go to emergency for?
  6. How long will it take to work/relieve my pain?
  7. If it doesn’t work, what are the next steps?
  8. If I don’t take this medication/have the surgery, what will happen?
  9. What are the alternatives?
  10. How much does the surgery/medication cost? (I hate that this question is relevant, but it is.  My current meds are more than $350 every six weeks, which may be a bit more than some people can reasonably afford).

A good (or legally savvy) doctor will tell you stuff like this without asking.  Most medication also lists all this stuff on the leaflet that comes with it, but it’s good to hear it from your doctor (and ensures that they are familiar with what they are prescribing you).

Pay attention to the possible side effects.  Just because a side-effect sounds appalling, don’t assume it will happen to you – remember, the worst side-effects tend to be rare.  However, do look out for effects that will be particularly problematic for you.  If you have thyroid issues, diabetes, or PCOS, watch out for medications that mess with your weight.  If you have a history of disordered eating, pay attention to side-effects that may cause you to lose or gain appetite, either one of which could cause a relapse for you.  If you have a history of depression or suicide attempts, look out for medications which exacerbate those.  If you have concerns of that type about the possible side-effects, raise them with your doctor.  Explain your history, ask how you can manage the symptoms, and talk about what to do if they become an issue.

If your doctor does not acknowledge your concerns or does not take them seriously, go and get a second opinion before taking the medication.  Mental health is serious and you should not mess around with it.

Bear in mind that side-effects for surgery are likely to be far more long-term and less easy to reverse than side-effects for medication.

Many people also ask their peers in support groups or forums online about their experiences with the medication or surgery.  This is all well and good, and can be useful if you are experiencing some unusual effects and want to check you aren’t alone.  However, remember that everyone’s disease and responses are different.  Six people could take the same medication and have extremely different responses.  Just because others in a group have had bad experiences doesn’t mean you will.  Likewise, just because others have liked it doesn’t mean you will.  Ask, by all means, but more to be prepared than to determine whether or not you will take it.

How you actually decide is based on what you value most.  Is the doctor really hopeful about the meds helping you?  How concerned are you by the potential side-effects?  Do you trust the doctor prescribing the medication?  In the end, you have to do a cost-benefit analysis and decide if you think it is right for you.  Generally speaking, I take the approach of “give it a go” with medication, because I can always stop it.  With surgery, I am now fairly cautious, because my first one really messed me up.  That being said, I also had three surgeries between November 2017 and October 2019.  I kind of let my level of desperation for pain relief be the guide on whether or not I have surgery.  Doctors (most doctors, anyway) don’t tend to jump straight to surgery., so generally it is a “desperation” sort of remedy.  However, I don’t know if that is necessarily the soundest reason for making a choice.  Please do consider it all carefully, even when desperate.

Now let’s turn to what you need to consider when deciding to discontinue a medication.  For this, there are really only two questions, unless your doctor calls you in a flap saying something has changed (like they’ve found a cure, or the medication is actually killing you).  These questions are:-

  1. Is it working?
  2. Can you deal with the side effects?

Sucktastic as it is, I have yet to encounter an endo medication that doesn’t have a side-effect.  It’s currently just one of those things that are part of our very annoying fate.

Now, if you answer the above two questions “no”, then the answer is that you should speak to your doctor urgently about discontinuing the medication.  Now, please don’t take this as medical advice, but if a medication is giving me no relief or improvement and the side effects are driving me mad, I will just stop taking it and tell my doctor, not ask them.  This is something I am particularly likely to do if getting in to see my specialist is going to take a while.  I’ll give you an example: Visanne, for me, gave me no relief whatsoever, and in fact made me feel like my pain was worse.  It also gave me a rash of gross, painful, itchy, pustules across my face, neck, shoulders, back, chest and scalp.  It was horrible.  My specialist was a three-hour drive away and appointments would be a few weeks to get.  I just stopped taking it.

It becomes more complex if the medication is actually helping your pain, but also causes you horrific side effects.  At that point, I would generally wait to consult with your doctor if you possibly can, and compare your pain levels on the medication to your pain levels without it.  Which is worse for you, the side effects, or the pain?  What are your alternatives if you stop this medication?

Ultimately, I can’t tell you where to draw the line.  You need to choose what’s best for you, and what you can or can’t live with.  However, I hope that this post has given you some guidance about what to factor into your decision.

Have you had to decide to stop a medication?  What drove your decision?  Is there anything I haven’t considered?  Let me know in the comments!

Decisions, Decisions, Part II: Changing Doctors

If your doctor dresses in a Renaissance plague mask, it might be time to consider a change.

To most, changing your doctor might not seem like a significant decision. However, when you have an illness that is pretty much guaranteed to haunt you long-term, your specialist is one of the most important people in your life. You rely on them for the overarching framework of your day-to-day treatment, and for the major things – operations, significant medication – that will ultimately steer your health journey. With endometriosis in particular, you have to talk to them about some deeply personal stuff – everything from your family planning to the sensations in, well, personal areas. At some point, they will almost certainly ask to conduct a fairly invasive examination of said areas. You want this person to be someone you trust. You want them to listen to you, believe you, and help you.

But what if they don’t? What if your specialist, whom you have trusted with your pain and probably your resultant heartache, is dismissive, insensitive or rude? What if they simply have run out of ideas? When do you say, “enough is enough” and decide to switch?

These are some of the important questions to consider when making your decision.

1) Are there others in the area?

This is less of an issue for those in populous, well-resourced cities, where specialists abound. However, in smaller towns or remote areas, your next closest specialist could be anything from a few hours to over a day’s drive away. Can you commit to travelling that distance for appointments? If you can, by all means, crack on. If it is more challenging for you logistically, you will need to weigh the issues with your current specialist against the issues with physically getting to the new one.

If you can travel, it can be worth it. Good specialists often congregate where there is high demand for their skills. To see one of my specialists, I travelled three to four hours each way (including post-op). To see my current specialist in person, I travel to the UK (although I’ve only done that once and he kindly consults by Skype). Whilst travelling halfway around the world is admittedly extreme, for me it has been worth it, because I couldn’t be happier with Dr Edi-Osagie. Even the three-hour journey for my previous specialist was worth it at first, because the quality of care I was receiving was significantly better than I felt I was getting closer to home.

2) Can you afford it?

Some specialists are cheaper than others. Some have a huge up-front cost but a lower ongoing cost, whilst others have a reasonably low cost for their initial appointment but higher costs overall. Some insist on an initial scan, at additional cost. With others, you may have to factor in additional travel costs.

3) What is prompting the change? Can a new doctor do more?

I’ve changed specialists three times. The first time, I lost confidence in her ability to do anything to help me. The second time, I felt like he didn’t believe me when I described the severity of my pain. The third time, he seemed too fixated on the idea of pregnancy as a cure, even whilst acknowledging it was a temporary fix at best, and it was clear our ideas about acceptable quality of life were not the same. With each doctor, I left the appointments feeling hopeless and a bit worthless, like it was my fault that I had this pain.

When the problem is a values clash, as with my second and third doctors, I think that changing specialists (all else being equal) is a straightforward decision. Life with endometriosis varies from hard to downright horrific. Enduring it is difficult even with everyone on your side. It is borderline impossible when the person who is supposed to be treating you gaslights and undermines you instead.

It’s more complex if your specialist can’t help you reduce your pain. It might be that they have reached the upper limits of their own knowledge, and another specialist could have new ideas or greater expertise. Alternatively, it might be that your disease has simply reached a stage where conventional medical treatment simply cannot assist you. This is an important distinction and one you should have with your doctor. If they are honest and have integrity, they’ll be able to tell you whether someone else can help where they can’t. It might still be worth getting a second opinion, especially if your relationship with your specialist isn’t that good or you feel that they are offended by the question.

Likewise, it is important to check out your specialist’s qualifications. If they are a fertility specialist first and deal with an endometriosis as a consequence of that, you may be able to get more advanced treatment from someone who focuses entirely on endo. If your surgeon has only tried ablation, it could be that excision is what you need. However, if you are already seeing someone at the top of the game, it could be that you have just run into the barrier of awfulness that is severe endometriosis.

4) What else can you do?

This question can mean “are there alternatives?” or it can mean “are there things I can do as well as change doctor?”

Alternatives may be explaining to your doctor how they have made you feel, if you think they will be open to changing.  It may mean staying with your primary doctor but seeking a second opinion, just to be safe.

Additions may mean making a complaint about your doctor to AHPRA, making a complaint to their practice, or commencing legal action against them.  I do not recommend taking to facebook or anywhere else and complaining about them to the general public.  It is far too easy to find yourself smacked with a defamation case by doing that, and that is the last thing you need.

If you do intend to sue your doctor for personal injury (if they’ve caused an injury, that is) please be aware that there are very strict time limits on your ability to do so, so get yourself to a lawyer ASAP for advice on your prospects.

 

Have you had a bad experience with a doctor that made you change to someone else?  Were there any limiting factors on your decision?  Let me know in the comments!

Secondary Conditions: Chronic Fatigue 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 myalgic encephalitis (ME), better known as chronic fatigue syndrome, aka CF or CFS.

Like most chronic illnesses, chronic fatigue can be mildly described as a massive pain in the posterior.  It’s exactly what it sounds like – extreme exhaustion that varies from sporadic to constant.  Have you ever had glandular fever, and had that dreadful, bone-aching exhaustion that drives you back to bed, on the verge of tears from sheer tiredness, just two hours after a 16-hour sleep?  I’m told its much like that.  In fact, chronic fatigue can often develop after a bout of glandular fever.  In other words, to describe CF as mere constant tiredness is inaccurate.  It’s crushing.  It doesn’t get better with rest, and it gets worse with lack of rest.  My own bout of glandular fever has given me a healthy fear of chronic fatigue.  I’ve never felt so horrific and disconnected in all in my life, and I only had it for nine months.  CF can be limited in duration, but it can also last for years, or for a lifetime.  Anyone of any age can contract it, even children.

This exhaustion may be the only symptom sufferers endure, but others may experience headaches, dizziness, weakness, nausea, light-headedness, aching muscles, joint pain, sore throats and tender lymph nodes, as well as trouble remembering, concentrating, or forming sentences (brain fog).  Unfortunately, most of these are also symptoms of glandular fever or even influenza, so it is worth speaking to your doctor to rule those two out.  Glandular fever can be confirmed with a simple blood test.  Indeed, excluding other conditions, such as anaemia, is the only way to arrive at a CF diagnosis, as there is no one test to confirm that you have it.

There’s also no known reason as to why people develop it.  Like most of the illnesses I’ve discussed in this series, it appears to affect those of the XX persuasion more than the XYs.  Its onset it sometimes linked to physical stressors, such as infections, imbalanced gut flora, and hormones doing wacky things, as well as just plain stress.  However, we’ve yet to identify a single factor that guarantees you’ll get it, and having any or all of the above doesn’t mean you’re automatically going to.

As you can imagine, the impact of severe chronic fatigue is devastating.  It can totally prevent normal socialising, normal functioning – normal anything.  It leaves people without the strength or energy to do much more than maintain the physical functions, and I’m told even that can be a stretch on bad days.  Even those less severely impacted suffer the impacts on their work and social life, particularly as it can strike at any time of day.  For those whose friends or family suffer it, prepare to extend a lot of patience, sympathy, grace, and practical assistance wherever you can.

So, what’s the good news?  Unfortunately, it isn’t that there’s a cure.  There isn’t.  There’s also no one treatment.  Really, the news isn’t that good.  Treatments are largely changing lifestyle factors – ensuring a healthy diet, planning your day around periods you tend to have more or less energy, pacing yourself carefully, and practising good sleep hygiene, including avoiding caffeine or naps late in the day.  Gentle exercise may help some, but for those who suffer Post-Exertional Malaise (an increase in exhaustion after activity) will probably not benefit.  Symptoms such as headaches etc can be treated with painkillers.

The most important thing, as I understand it, is having support.  Supportive friends, a supportive workplace, but most of all, support from people who get it.  I think that’s true of most chronic illnesses – to have even just one person who knows what it’s like can be a huge relief.

Do you have chronic fatigue?  What was the trigger for you in developing it?  Do you have any coping strategies you can share?  Let me know in the comments.

 

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.

Secondary Conditions: Adenomyosis

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 endometriosis’ sister, adenomyosis.  

A week ago I mentioned that I have a tentative diagnosis of adenomyosis. My doctor suggested this after surgery has failed to resolve my pain and swelling despite all endometriosis having been removed and nerve pain being largely ruled out. He is the first to suggest that adenomyosis may be mucking around in my uterus.

But what is adenomyosis, aka adeno?

Well, you know how endo is when endometrium-like material grows wherever it wants instead of where it should? Adenomyosis is where it grows inside the uterine wall. Not inside the uterus, where it could be handily dug out, but inside the muscle wall itself.

Image result for adenomyosis
Image description: a diagram of a normal uterus next to a uterus with adenomyosis in the uterine wall.  Image credit: https://step2.medbullets.com/gynecology/120209/adenomyosis

I’m told it’s in the name – adeno (gland), myo (muscle) and osis (condition).

Like endo, adeno can only properly be diagnosed through surgery, although symptoms, transvaginal ultrasounds and MRIs can all offer diagnostic clues.

Symptoms are similar to those of endo – bleeding, pain, swelling. The usual culprits. It usually appears hand in hand with endo, but not always. You can have just one or the other. It can also be masked by the presence of endometriosis. The possibility of me having it wasn’t even raised by doctors until we were sure all my endo was gone and I was still having pain.

Unfortunately, the fact that it is buried inside the wall of an organ is problematic when it comes to treatment. Endo, at least, only requires the sufferer to have some holes bored in their abdomen so surgeons can get into the pelvic cavity. On the plus side, adeno can be cured by a hysterectomy, unlike endo. Other treatments include IUDs, menopause, and keyhole surgery.

Surgery itself comes in a variety of forms for adeno. As mentioned, there’s a full-blown hysterectomy (typically a last resort). Another option is uterine artery embolisation, or UAE, which blocks the two main arteries supplying blood to the uterus. With these blocked, bloodflow is significantly reduced (although not totally inhibited) and the adeno is also starved of blood. It’s not a cure and it may require repeat surgeries.

The other option is myometrium resection, or adenomyoma resection, which focuses on the removal of large clumps of adeno, known as adenomyoma. Unfortunately, it targets only those clumps and won’t get tiny bits scattered across the uterus. It can improve pain and fertility, but also carries the risk of the uterine muscle being torn or weakened, and may increase the risk of miscarriage. As usual, all our treatment options are an exercise in trade-offs.

What causes it? Well, like endo, that is something of a mystery. Current wisdom indicates that some type of trauma to the uterus, such a childbirth or surgery (such as removal of endometriosis) can encourage it. Isn’t that a fun piece of irony?

All in all, there’s a lot of similarities with endometriosis, and not in a good way. To most endometriosis sufferers, I suspect being told they also have adenomyosis will just feel like another hurdle in a very long and bumpy road rather than a new road altogether. For others, it will be devastating news – here’s another lifelong illness.  I’ll admit I shed some tears.

For me, the next step is to get my pain more under control and confirm the diagnosis so we can respond as effectively as possible. I’ll keep the blog updated on how things go.

Do any of my readers also suffer adeno, or suffer it without endo? What have your experiences been? I’d love to learn more as I’m very new to this.

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?

Christmas Giveaway!

It’s finally December, which means it’s nearly Christmas!  I love Christmas.  It’s my favourite holiday of the year and I love the atmosphere of family, happiness and giving that I associate with it.  I want to share some of that with my readers, so I am very excited to announce the first big event for this blog: a Christmas Giveaway!  I foreshadowed this and I am really hoping that it benefits the winner.

But the important question is: what do you win?

My friends, you win a Painmate, valued at $50.

PAINmate TENS Machine
Image description: Painmate, a portable TENS device.

I’ve mentioned this little trooper before.  It’s a battery-powered, stick-on TENS device that you can wear under your clothes.  It’s very discreet and has a whole range of power settings, from barely-even-tickles to I-can’t-feel-my-legs.

The next important question is: how do you win it?

My friends, you win it in three simple steps:

  1. Follow this blog;
  2. Follow Bubbles in the Brain on facebook;
  3. Comment on this post with your facebook name so I can verify that you have done both.

The winner will be drawn randomly through the very sophisticated method of putting all your names in a bowl and picking one with my eyes closed on 15 December. I will then contact the winner to organise delivery of your prize!

Is there a catch?  Yes, there is.  This giveaway is only open to people in Australia (sorry!) due to exorbitant international shipping.  I’m hoping that future giveaways will be able to be open to all, but go easy on me, it’s my first one.  This will be a nice change for Australians, as typically we don’t get to participate in things for the same reason.

Tip for the Painmate: whilst you will need to buy spare battery packs to get new sticky pads, the batteries run out faster than the pads.  If you just need a new battery, buy a cheap packet of watch batteries from the supermarket in the right size.  They are far cheaper and last longer.

Happy nearly-Christmas!

 

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.  

Total Pelvic Peritoneal Excision: One Month On

One month ago today I had the surgery I desperately wanted.  Regular readers will know that, sick of incredibly debilitating pain and sick of being told to wait it out, I contacted Dr Edi-Osagie in England and asked him to undertake a surgery I couldn’t get an Australian doctor to do: Total Pelvic Peritoneal Excision (TPPE).  Today I want to share with you my experience of this surgery and my recovery over the past month.

Unlike a normal excision, which simply digs individual lesions out of the peritoneum, or lining, of the organs and pelvic wall, TPPE also removes the peritoneum so that endo has nothing to grow back on.  In my case, the good doctor did this to the back of my uterus and my urethra, which was where the endometriosis was growing in my case.  

I much preferred the preparation for the surgery than what we have in Australia.  In Australia, you have to drink a variety of icky liquids that give you appalling diarrhoea, and not eat for a day. For this surgery, I simply fasted overnight and had an enema.  Embarrassing?  A little.  But honestly, I’d rather have a nice professional nurse sticking whatever it was up my bottom than drink litres of glop so foul-tasting that it’s even odds as to whether you expel your insides through your mouth or your backside.  For those who’ve never had surgery, I cannot properly convey how bad that stuff tastes, particularly when you haven’t been able to eat all day, and have been on “white foods” only before that.

The day before the surgery I had all my testing and whatnot, and the day of I met a whole reel of nurses, my anaesthetist, and finally, Dr Edi-Osagie. Due to distance, we’d only chatted on Skype before this.  He is as lovely in person as he seemed on the computer, and was very careful to ensure that I understood what was going on and had no fears about it.  He was very thorough in his post-surgery explanation too, taking me through all the photos of my innards (which I got to keep!) and, unlike many surgeons, waiting until I was awake and functional before speaking to me. I’ve had previous surgeons explain to me while I’m still drifting in and out of an anaesthetic haze, and by the time I woke up properly, I would only retain about 1/10th of what they were saying.  By waiting til the next day, Dr Edi-Osagie ensured I actually would remember and understand what he said.  

Initial recovery from was painful, although no worse than my last excision.  As with last time, I woke up in recovery with the shakes.  Jury is out on whether this is pain or cold or both, but an extra warm blanket and having control of my own morphine supply sorted it out.  I remained fairly dependant on the morphine until mid-afternoon, but after that did not need to use it again.  By the evening I was sitting up and had my catheter removed so I could use the toilet independently.  By mid-morning the next day, I was ready to go home. 

A note for vegans: the hospital I was in did not have any vegan options for dinner.  Bring something.  

The biggest problem initially in my recovery was the shoulder-tip pain. When you have laparoscopic surgery they blow up your abdomen with gas so that they have room to work inside your pelvis.  Not all of that gas comes out immediately, and it can bounce around your diaphragm and up into your shoulders, leaving agonising pain in its wake.  It’s kind of like having a stitch, but 100x worse.  The only thing you can do is try to move to a different position, use heatpacks, and drink lots of peppermint tea.  

Once the shoulder pain started to reduce, I became aware of a new problem: constipation.  The trouble with morphine, codeine and tramadol, all of which I used post-surgery, is that they constipate you terribly.  I’m normally a 2-3 times a day type of girl.  My surgery was on Sunday, and I did not poop again until Wednesday.  When I did, I was stuck in the loo for about 20 minutes because things were so slow-moving.  My poor insides felt so bruised.  

Lately I have also been experiencing bladder pain.  Urination has been uncomfortable since the surgery due to my urethra being stripped all the way back, but a week ago my bladder or uterus or something in there was in agony when I peed.  It is calmer now, but still uncomfortable. It isn’t a UTI – there’s no burning and I’ve had it tested just in case – but boy, it’s not fun.

Overall, recovery from the actual surgery has been remarkably good.  I have four little incisions, which have all healed beautifully. My peritoneum is about 3/4 regrown now, apparently.  I did about a 5km walk less than two weeks after the surgery without too much trouble. Walking wasn’t really a problem at all after about a  week or so, although standing still remains an issue, so I used a wheelchair for things like shopping or going to museums, where you walk and then stop, walk and then stop.  

One month on and I’m fairly certain that all my remaining issues are attributable to my new mirena.  I find the adjustment period for the mirena really rough, and I’ve had ongoing spates of bleeding and period pain (not necessarily related to each other) for the past two weeks. If those aren’t gone soon, I’m going to talk to someone about having the mirena removed and see how I go without it.  

It is really nice not having endo pain in the way I have come to know it.  If I can get rid of the mirena pain I’ll be a happy little chappy.  At the moment, I’d definitely rate the surgery as a positive experience.  I hope to know properly by the new year whether it has really worked or not, and I will keep you all updated.