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!

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.

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.  

Flying with Endometriosis Part 5: What I’ve Learned

For many people, flying is already a nightmare.  For people with endometriosis, there’s an added layer of difficulty.  In this multi-part series, “Flying with Endometriosis”, I want to talk about some of things we can do to make travel a bit easier.

I’m back!  I’m in Australia again, the jetlag is slowly dissipating, and I have a shiny new computer on which to write blog posts (just as well, because writing them on my phone is tricky and tedious).  And on the way, I learned a couple of things that make me want to either reiterate, correct or edit things I’ve said previously.

1) Business is better

Like the bougie child I am, I flew business class this trip.  No, I could not have afforded those tickets without financial help, and I am very lucky.  However, I cannot overstate the difference it made to be able to lie flat – completely flat, even at 5’10” – rather than being sat up the entire flight.  This is particularly so on the way back, when I was bloated, sore and touch-sensitive from the surgery.  Having fewer people battling for the loos was also very important, as the surgery caused some interesting issues for my bladder and bowels.

If you are in a bracket where you can afford business class but are cringing at the unnecessary expense, I would encourage you to look at it less as a luxury and more of a way to avoid 24 hours of pain.

2) I should have packed differently

I needn’t have bothered with my Kindle as I ended up buying several fascinating books on my trip.  I didn’t open my Kindle once.

I should have packed a second Divinity collection Maxi.  Comfy as my leggings and my two-sizes-too-big jeans are, the flowing freedom of this dress was exactly what I needed, because on several days it got the point where I could not possibly wear something with a waistband.  It was also too cold to wear my shorter knit dress from Review more than once.  The longer dress helped cover my cold legs.

I should have remembered that Singapore Airlines Business Class is pretty luxe.  I didn’t really need so many products as the airline had a bunch in the airplane loo.  That being said, I would stand by bringing them in my carry-on if I had not been flying Business.

Overall, I think I packed pretty well.  I wore everything I took and used pretty much everything except the Kindle. I did have a problem with buying too much in the UK and not having enough room for it all on the way back, though, so I had to use my poor mother as a shopping mule.  Shopping in the UK is so much better than here.

3) I should have taken laxatives

Ok, so this one is a bit gross, but endo peeps will know what I’m talking about.  Post-surgery you are in a LOT of pain at first, so they give you a number of serious painkillers.  I had a morphine button – a button I could press any time I felt pain to get a shot of morphine – and morphine (plus the follow-up codeine) makes you as constipated as you can get.  My surgery was Saturday.  I didn’t poop until Wednesday (in a public toilet on an island full of squirrels, by the way), and I was chugging this weird liquid laxative they gave me (both gross and ineffective) and drinking prune juice like it was going out of style.  I know the laxatives I buy normally work (they are only in case of emergency and they just shoot through you).  I should have taken them and avoided three days of extra constipation pain, which I did not need.

4) I was 100% right to take my pillow and blanket

That pillow I mentioned that I took as carry-on was 100% the right call.  It was more comfortable to use on the flight and it was vital post-surgery.  I used it to:-

  • Protect my stomach from the seatbelt;
  • Prop up my knees to relieve tension on my back when shoulder-tip pain prevented me from sleeping on my side;
  • Tuck under one side of my distended tummy post-op so it didn’t flop awkwardly and painfully to one side
  • Hug to my torso as for comfort, cushioning and security;
  • Prop myself up in bed.

The blanket was great because I tend to get cold very easily after an operation, and the heating in my bedroom was all over the place.  I only used it once on the flight but since it tucks easily into the pillowcase having it there was hardly an imposition.

5) Taking an extra three days off work was the right call

I arrived back in Australia late on Friday night.  Originally I was supposed to go back to work on the Monday.  Instead I arranged to return on the Thursday.  Definitely a good idea.  Jetlag + post-op pain does not a happy combination make, and those extra three days were really important in my recovery.  I’m far from 100% yet, but I’d be far worse if I’d forged ahead with work on Monday.

6) I could not have done this alone

Having surgery unsupported is very difficult anyway.  Having it unsupported in a country that you don’t normally live in, where you have to organise transport and accommodation, would have been overwhelming.  If not for my family – particularly my mother – supporting me physically, emotionally and financially, I could not have managed the surgery.  Recovery is hard and at times scary.  I need someone with me, and I am so grateful I had that.

 

That pretty much concludes my series on flying with endometriosis.  Over the next few weeks you can expect a lot of posts about the surgery and recovery, but also about the places I visited because England is amazing and I want to move back there.  Hope you enjoy it!

Various Announcements

Look at all these cheerful people announcing things!  Stock pictures are great.

I want to announce a couple of exciting changes.

  1. I have added some menus and an “about” page.  If you go to the home page and take a peek at the right-hand side, you should see my posts about endometriosis collated in one menu, and my posts for tips and tricks on living with endo collated just beneath that.  I’m hoping this will make these posts more accessible, particularly given that they are the primary point of this blog.
  2. I’m dropping my frequency of posting from daily to every second day for now.  I think I’ve built up a decent amount of content now that should keep new readers entertained for a while.  As I’m getting better at the moment thanks to being in false menopause (post on that coming soon!) I’m back at work and have less time to write posts, so generating seven over the weekend for the coming week is a bit of a challenge.  I haven’t lost my drive to maintain this blog, but I am now much more lacking in time than when I was home sick three-five days each week.  Reducing my posts to every other day will let me produce better quality content as I’ll have more time and energy to devote to it, and stop me having to do those apology posts that I’ve been doing recently (sorry!).
  3. I’m travelling to the UK next month, so that may also affect my ability to post.  I will try and prepare a bunch to release whilst I’m away but I may not have as many as I’d like, and I want to spend my time in the UK with my family, so for three weeks this blog will take a backseat.  It will be up and running again as normal in November, though!  Expect some posts on travelling with endometriosis and travelling generally, including packing lists and must-see places in the UK.
  4. Finally and most excitingly, my surgery has been confirmed!  Dr Edi-Osagie will start with an exploratory operation, and if he confirms the presence of endometriosis he will perform a total pelvic peritoneal excision.  I’m terrified but full of hope.  I’ll do a more fulsome post on this as well in the near future.

So, these are the exciting things going on in my life right now.  Big changes, hopefully for the better.

I just want to finish on a quote I heard in the current audiobook I’m listening to (I use Audible and I cannot recommend it enough), which is Oathbringer by Brandon Sanderson.  It says this:

Accept the pain, but do not accept that it is your fault.

That really resonated with me, for fairly obvious reasons, and I keep coming back to it.  Accepting the pain that is part of our lives is so important, and feeling guilty for having it is an incredibly important trap to fall into, but it is something we need to fight against.  This quote just reminds me of that.

Are there any things you would like to see posts on in the coming months?  I’m still working on a Christmas giveaway or competition as well, so I’d love to hear your thoughts on a good prize and whether a giveaway or competition is preferable.  Let me know in the comments!

Quick Update and Apology

Hi all

Just a very brief post to apologise that I won’t be able to publish a full blog post today.  I’ve had big work thing (a court hearing in a long-running case) and the stress and physical requirements have just wiped me out, so I’m not able to sit at my computer long enough to type out a post.  Normal service will resume tomorrow with Reframing Part III: Body Image.

That’s the apology, now for the update: you may remember that I have previously mentioned an exciting type of surgery called Total Pelvic Peritoneal Excision.  Well, I’ve had a Skype consult with Dr Edi-Osagie, the only surgeon I know of who is currently performing it.  We’re going to do a drug trial to determine whether my pain is nerve-related or active endometriosis.  If it is active endo, he will operate!  I will continue to let you know how it goes.

I must say that Dr Edi-Osagie’s approach was thorough, gentle, and attentive.  I actually felt listened to, and, for the first time in my endo experience, like I had a voice in determining my treatment plan.  It is a new and heady sensation!

Happy Friday!