What’s that coming the hill? It’s the endometriosis monster!

I feel like I’m living in a whirlwind. Life feels wild, all around and within me. I want to be enjoying life with the new found freedom from some of my PTSD, and yet there is my physical health, waiting to trip me up.

At the moment, the biggest fear is knowing the inital six months of Zoladex is nearly up. This is terrifying me. The months before starting treatment were like scenes from horror films, and needing to go back there is the least appealing thing anyone could be instructed to do. I always knew it was the plan. Six months on, three months off, review. Sounds so simple to write it up like that. But the reality is very different. First point is that’s 3/4 of a year out of my life we’re discussing. Then there’s the practical points. Six months of injections is tolerable, even if they are fucking big needles. It’s over in seconds, and that’s the next four weeks covered. It’s the months after that are worrying me. I’ve become so comfortable at low level pain, I almost don’t know how to fathom what I’m returning to when the last one runs out.

I don’t think I’ve ever been this scared of pain. Being in pain chronically, I’m used to being in pain and fearing it doesn’t help, so I try to just face it head on and roll with it, but with this looming, I am terrified. And I know I’m going to have to go through it, because if nothing else, I need to prove the bloody point that I have endometriosis! It’s exhausting and scary. And infuriating. I’m angry that I am another woman in the system having to prove my gynecology related pain is real.

The months before Zoladex were agonizing, bloody and tearful. I slept endlessly so wiped out by pain and blood loss. I’m so scared of that comimg back. I can feel the ghost of that pain hovering around and knowing it will be back to haunt me before I can truly move forward with my life is such a hideous fact.

In the past, I have had a grapefruit sized dermoid cyst, two lots of adhesions, and a tube twisted so tight I nearly lost the tube. My second surgery, with one round of nasty adhesions, when I came around, my first question was, “Did you take anything out?”. They looked at me like I was mad and said no. I burst into tears. I was told to shut up and not be so ungrateful as the woman opposite me had just lost a tube.

I really need a third laparoscopy to see and remove whatever is causing issues. I’m now sure, with medical support, there is endo on the bowel as well as elsewhere, and the only way for that to be addressed is surgery.

What a surreal thing; to be requesting surgery for a desperate chance at some normal life.


A Cripple Snow Day

It’s the 27th of February and today was a snow day! What a bizarre turn of events. I’ve never known such late snow (although of course I could be wrong), and the best bit, on a selfish level, was that it was the first proper snow that LittleCrafter remembered.

The school was open in the morning, although it closed at midday, but I was stuck; they grit the roads, but they never grit the footpaths! So as a wheelchair user, getting there and back, twice, the school runs are always a bit tricky when it’s icy. Add a few inches of snow, and it gets complicated. Snow is lovely to look at but as soon as it gets crushed, it becomes sleet. And wheelchairs don’t fucking like sleet.

So I called the school and explained it would be a snow day here, as I was stuck. LittleCrafter was perfectly happy with this, as he had been bouncing off the walls since waking up because SNOW MUMMY LOOK SNOW DAD OMG SNOWWWWWW. The word ‘snow’ was wearing thin by 9am, I must be honest.

The roads to Husband’s work were awful according to the local bus app, and that combined with me still being so ill at the moment – all well and good being unable to do the school run, but I also currently stay awake for multiple hours, which feels like a massive point of failure personally – he was needed at home. Which of course meant a 9am snowball fight.

I managed a few minutes of wobbling before the pain became too awful and I needed to go and lay down again, but LittleCrafter and Husband continued to play in the garden for a while whilst I slept. It was a painful dsy for me physically, but was also a balm for my soul; the look on LittleCrafter’s face making his first snowball, practicing aiming at the window, cackling as snow was swirling around him…. best cripple snow day ever.

It’s been really hard being so ill recently. It’s demoralizing and emotionally painful. Feeling like a failure, like life is playing a cruel joke sometimes. I’ve been quite low again of late, and the precious little moments I took from today will propel me through the next days of pain.

A Positive Appointment

I had an appointment arranged with Digestive Diseases by the Rheumotology department several months ago. It’s taken a while to reach the top of the list, but was well worth the wait. That said, it was of course one of those awkward times where I had no childcare, so had to take LittleCrafter with me, which is always a) somewhat humiliating, and b) always expensive as I end up buying all sorts (in this case, a book because comics are now the same bloody price so it might as well be a book, a Costa strawberry cooler bloody drink, and a slice of bloody cake. Sigh. Spoiler; he was superbly behaved thank YARN and even the doctor complimented how he had he had been, which was rather a relief, as I can’t help feel extra nervous taking him with me.

I digress.

This appointment came through, and off we went to the hospital (book, drink and cake in tow), and wove our way through the maze of hospital floors, until we finally found where we were headed. We were only waiting about ten minutes, and there were designated wheelchair spaces in both areas, so it was quite pleasant, in as much as these things can be. There was a nurse who faffed a tad too much because I was in a wheelchair, but I managed to keep a smile firmly on my face, almost as firm as my “no thank you, I’m fine”. These little moments are always hard to handle, because she did mean well. But she paid far too much attention to me in comparison to the others in the waiting room, and that’s when it become slightly difficult to handle.

When the doctor called us in, he informed me he had two medical students in with him. I never object to medical students, and that’s two fold. Firstly, every training doctor needs to learn as much as they can, and I would hate to waste their time, having them be sat in the waiting room when they could be gaining knowledge seems pretty crappy on my part. Secondly, I am a complex case, and so possibly present more information, or at least more variation of information, which I hope could help patients to come. All of that said, I also respect it is entirely individual, so I am in no way judging those who chose not to have medical students in the room, these are just my personal musings.

I had been anticipating the appointment for a while, and since starting Zoladex, my symptoms have changed so much I was worried he would think it was a waste of time seeing me. I couldn’t be more wrong. He took a full medical history, then we discussed the change in my symptoms since beginning Zoladex. He pressed on my abdomen, which was delightfully painless (or at the very least, with no major pain) and then agreed with my theory. The theory being that there is endometriosis on the bowel. My symptoms have changed so much in so many ways, but the bowel related changes have been particularly interesting. If you’re squemish feel free to skip the next paragraph.

Before December, my bowels were very problematic. Urgency (and I mean, only just making it), extreme pain, constipation, nausea, stabbing and spiky and swirling pain. It was a massive surprise and delight to find these things changing when my Zoladex kicked in. What I thought was lactose intolerance disappeared. Even my senstivity to wheat vanished, although I have still been keeping that as a low to be safe. All of this pointing me in the direction of thinking that there is endometriosis on the bowel.

I discussed all of this (with Little Crafter having headphones in, listening to an audio book), and the doctor agreed with me that it certainly seemed that way, and gave his support to my theory, which if nothing else is reassuring that I’m not totally losing my mind. He ordered some blood test and a coeliac test (which, for anyone who doesn’t know, involves a poo sample. Yes. A poo sample.) to check things over, so I am now eating a lot of wheat for six weeks, and then a sample. One suggestion in our discussion was that I do have lactose intolerance, and / or possible coeliacs, that is then being irritated by the bowel endo when it is in flare.

In all it was a really positive appointment that I felt I really benefited from, and hopefully has pointed things in the right direction. If nothing else, I felt it was important to go to my next gynecology appointment with back up having ruled out IBS as a cause of pain (because any woman out there will know that it is that and hormones that apparently cause anything).

This recent health journey has been complicated, emotional and hectic, but I feel like we’re really getting to where we need to be now. Fingers crossed.

“So what do you do?”

I’m an introvert. Meeting new people is hard and awkward, even if I enjoy it in the end. Part of the whole problem is the dreaded question, “what do you do?”. It’s a pain in the arse. Because the answer is “I sit on my arse drinking coffee and crocheting. Or sleeping.”, and what kind of answer is that. At least, that sentiment is what goes through my head. I know my answer is perfectly valid, and yet it leaves me feeling lacking. That’s purely an internalized issue. My perfectionist soul never planned to be unable to manage my housework, and so not having an occupation to report in answer to any questioning is felt like a personal shame. I’m getting better at it. I used to bluster and come out with justifications and explanations, whereas now I manage to smile back and say, “Oh I’m long term sick”, without too much internal squirmimg, steeling myself for the “aww”, “ahh” and “ohh”s that follow such statements.

The fact is that, although improving, society is not conformatable with disability, so being informed it is “all” someone “does”, some people just can’t process. People are fine with people like Paraolypians because they “do” something apart from being disabled. I’m lucky to be surrounded by people who love and value me for who I am, inclusive of my disabilities. But when meeting new people, you never know what card you’ll draw.

At the moment I’m dealing with an issue to my dominant arm, which is preventing me crocheting. That needed bold letters naturally. I managed a bit of crochet the other day only for it to ger worse, and have now been told to rest it completely. I feel at a loss! It’s awful. I’m sat just twiddling my thumbs. As well as being physically put out, mentally I am all wobbly. Crochet isn’t just my hobby; at times it feels like all I achieve. Whether this is healthy or logical, I’m unsure, but feelings aren’t always thus. Far better to accept a feeling than fight it, anyway. So without my crochet hook in hand, I don’t know quite what to do with myself.

Crafting is such a major part of my identity, that to be restricted feels almost worse than being limited with leaving the house. Because of course my same arm is the steerimg arm fot my chair. Crochet is as natural to me as breathing, and seeing as they are not.sure why this issue is happening with my arm, orr when it will go down, I feel scared. I know there is more to me than my crafting, whether it is someone else asking, or I am examining myself, and yet to be without it for however long it takes is a cruel punishment.

That said, it does mean I also can’t do the washing up. Silver linings.

Survival mode

I’m in either flare or relapse mode and this means making some sacrifices. This will be a brutally honest post because the reality of these modes, for whoever is suffering them, is brutal. Utterl brutal and cruel and punishing and horrible.

I changed my morphine patch early on Sunday to have a long hot bath (you can’t raise your body temperature too much when wearing a patch as it cab release too much of the drug into your system). It was lovely ti relax in the hot water, watching TV on my laptop, face mask on and attempting to do my skin some good. Sounds very pleasant, and whilst it was, the reality – the brutal bit – is that I hadn’t had a shower or bath for around ten days prior. It feels grim to admit it, but equally there was no physical way I could have managed either before I did so. Having long hair is an advantage at these times; one exertion of energy to braid it, and you don’t need to do anything else for a few days. Never going to win a fashion award, but like this is titled; survival mode.

Yesterday I slept half the day away. I napped in the morning, then fell asleep by accident around midday, and went to bed in the afternoon. Then it was an early night with some TV in bed together. We managed a family trip to the park, with me in my chair, for a short while. Getting out of my chair with my stick – because of the risk of getting stuck in the mud – is something I am paying for massively today. It was a lovely time and I’m so glad we went; I haven’t been the parent I want to be whilst I’ve been so ill.

That’s always a hard standard to keep. Being disabled your standards shift – not decrease, but move around what you are working with – and then when you are having a period of ill health it’s even harder to achieve your goals. LittleCrafter has limits and obligations set to him that childten of healthy parents don’t, and I fight against myself every day to make sure his childhood is as normal as possible… simply with a wheelchair involved.

Sleeping so much should make me feel rested but of course it doesn’t. I’m just more tired than I was before. Someone once asked me “why sleep then ?” and the answer is I just don’t have a choice. I can fight to stay awake for ao long and then collapse at breaking point. I also think that my body waits until it is safe to fall apart – like yesterday when my husband was home – and that cycle isn’t healthy. With changes we are trying to put in place hopefully that will change. We will see.

One of yhe things that suffers the most when I am in survival mode is my mental health. The isolation and loneliness of being stuck in bed, or at least in the house, is something I cannot put into words fully. It cannot be described, only experienced. Being unable to socialise in any way, even saying please and thank you to a server in a shop, nags away at your sense of self.

All of that said, I am a lot more at peace with it than I was. It’s taken a lot of time, meditation and quietness mentally, to reach this point, and sometimes i still slip up and feel alone, but my goodness the steps forward I have taken!

Survival mode means water instead of coffee. It means naps. It means extra meds. It means resting after the simplest of things. It means giving up on things that you want and need to do, for yourself and others, until possibly weeks later. It means living on toast if you can stand to eat at all, or maybe takeaways because therr is no other choice. It’s rewatching TV time and again because you didn’t process what was happening. It’s feeling so cripplingly alone, with nothing to be done about it.

It’s not a horribly evil thing. It’s just a reality for me and millions of others around the world. Survival mode; what a bastard.

Good medical care should be standard, not exceptional

A few weeks ago, I put a request on my personal facebook asking if someone would be able to attend a medical appointment with me. I was feeling stressed, having had a pretty ‘blah’ appointment with the doctor previously, and earlier awful ones in the department. The stress continued even after a friend said she would accompany me, just because of sheer anxiety. I feel like I should add here that it was a gyne appointment, which is never fun for any woman, and even less so if you have gynecological conditions.

Fast forward to today and even with my friend (another friend, poor thing was poorly) sat with me in the cafe before hand, and I was so panicked. I went through and highlighted the extra evidence I had asked for from my GP to back me up, making sure I had a series of bullet points if I needed them; by going on Zoladex I had gone against his previous advice, which had been to focus on my fertility.

As it was, he was entirely supportive of my decision, was genuinely pleased it was helping, and completely agreed with my statement that any laparoscopy needed to wait for at least six months – three more months on Zoladex, three months following that for things to be awful again, and so more evident during surgery.

Afterwards in Starbucks my friend and I were discussing how nice he had been and then the discussion shifted somewhat, hitting on the fact that him being nice shouldn’t be a surprise. It shouldn’t be so remarkable that a doctor cares. It shouldn’t be unusual that he wanted to help. It should be standard. There are some awful human beings out there, and of course a portion of them are going to be in the medical field, but that doesn’t make it okay to treat people like crap, to forget that these are literally their LIVES you are playing with, to accept pain as something that is fine and doesn’t need investigating, to BLAME the person for their suffering, to act like they are being DIFFICULT or BORING to ask for help. There are so many professionals who get off on the power dynamic, and have forgotten that at the core of medical treatment needs to be the word ‘care’. Four little letters. Not a huge amount to ask. Most patients are reasonable, and do not expect a magic wand to be waved. But to be treated with respect, politeness and patience…. Surely, that isn’t any more than we would want to be treated with as a human being?

I have been ill for over a decade now. I have some exceedingly awesome doctors who make all the difference to my life. Some doctors and medical professionals have made wonderful things happen, and I do try to make sure that praise gets back to these individuals so they know how wonderful they are. But sadly the other ones that really stay with you are the ones that cause damage. The ones that illegally section you. The ones who tell you that you’re in pain because of your sexual abuse. The ones who tell you that if you lost weight the world would change completely.

Having such a narrow view on the world doesn’t help yourself or your patients. The world isn’t black and white for goodness sakes. It’s a bright, vivid, shiny rainbow! There are bursts of colour, and sparkles, and fireworks. And whilst I’m sure there is an element of bitter cynicism to encounters after fifteen long hard years, that is when you need to shift either your attitude, or your job.

It shouldn’t be breath taking when you are treated nicely by a doctor or nurse. It should be routine. If we were all just a bit bloody nicer to each other in general, wouldn’t the world be so much more bearable?

PTSD and Insomnia

Eugh. I’m awake. Again.

I haven’t really slept tonight, and I bloody needed to. After laying awake for hours not wanting to wake my best friend asleep next to me, I gave up and came down to the restaurant for a coffee with my crochet and my Kindle.

A slight tangent here; I love my Kindle. I’m a massive book lover and nothing will ever replace the feel of actual books in my hands, but being disabled, yet even without that, the ability to carry around hundreds of books with one item is almost magical. I love my Kindle for the options it gives me and the freedom it represents. I had stopped taking books out with me as the weight of it was too much to take. So having a Kindle gave me the ability to read wherever I wanted again. Maybe for this reason, it always disappoints me when people turn their noses up at ereaders. Worth thinking of it fromba different angle.

Anyway. I gave up at 3.30am and came to find out if coffee was an option. I was told it coupd be but it would be fromba machine; fine with me at this point as I just need bloody coffee. So I opted for a mocha, something I rarely do, and I do have to say it wasn’t as awful as some coffee I’ve had in my life. As you read that sentence, please remember I am a self confessed coffee snob and I don’t feel bad about it.

I had a horrible interaction with a security guard not long after I arrived in London today, and there is every possibility that is why I am unable to sleep. I won’t bore you all with the story, but surfice to say he was in the wrong, very much so, the manager agreed with this, and he will be in trouble with his manager (sub contracted staff). On top of being a horrible experience, it was incredibly triggering, and my PTSD wenr into over drive following the interaction. I cannot fault the manager who comforted me and was completely lovely, but it is another day, another reminder, that I am not ‘normal’.

I joke about it normally, and say how normal is over rated, but the blunt truth is I am odd because of the rewiring of my brain. Obviously with trauma therapy, I’m doing what can be done, but there is a lot that simply can’t. I will be like this forever.

Insomnia is a slippery bastard. Just as you think you have sleeping sorted, there comes another night of being wide awake. And there’s no point fighting ir because that just makes it growl and keep you up for longer. I’ve had about 25 minutes sleep.

It’s not a fun way to live. Generally my insomnia is better controlled than it used to me. Frankly a part of me is always surprised when it can push through the cocktail of meds. The other part of me is just fruatrated to see it again.

PTSD makes you relive the worst things in your life. And then it goes further, expanding out, looking for triggers to those awful things, however distant; colours, smells, words, tones of voice. In the case of today it was a horrible aggressive attitude and a man getting very close to me with a sneer on his face. Too many memories, too much danger. I did manage to stand up for myself, but apparently at the cost of a night’s sleep.

PTSD and insomnia often go hand in hand and it really is no surprise when you think about it. To sleep you have to feel comfortable, mentally and physically, and if you feel unsafe, that isn’t comfortable. PTSD thrives on keeping you feeling unsafe.

The bastard.

A Magical Adventure On Wheels

Oh. My. Dumbledore.

Yesterday I went with a friend to see the exhibition in London about the history of Harry Potter…. and of magic. “Harry Potter: A History of Magic” gives you the experience and insight not only to the magical world that J. K. Rowling has created, but also to the inspirations she had, and the beliefs in magic stretching back hundred of years, including a cauldron that had been thrown into the river Thames over two thousand years ago.

There were texts showing an invisibility spell, an alchemists scroll with the instructions to make the Philosopher’s Stone (although of course as all Potterheads will know, the only recent creators are Nicholas Flammel and Albus (Percival Wulfric Brian) Dumbledore, and as such these should be our point of reference now), stunning maps of the stars, crystal balls, and sheets upon sheets of stunning works, including one by Da Vinci himself, which was so beautiful I almost sobbed. There were early plans for the Potter books, drawings by J. K. Rowling, illustrative paintings and drawings by Jim Kay.

I can’t begin to list the amazing things I saw yesterday. It was moving in so many ways. The wonders of the crossover between science and religion, the historic change from original nature based wise crones to the traditional ‘witch’ image we have today, the real remains of 500 year old plants, the true magic of wisdom of sages…. I could have spent at least three weeks in there, reading everything time and again, and it never be too much.

I’m a proud geek. I taught myself the basics of both Latin and Egyptian hieroglyphics just ‘because’. I dare not count the exact number of books I own, and my ‘to read’ pile never gets shorter. I have cried over the thought I will never be able to read all the books I want to before I die. It’s probably obviously to any Potter fans reading this that I am indeed a Ravenclaw. Learning new things is possibly my favourite thing in the world. So this was a perfect exhibition.

It was decorated from top to bottom, perfectly and fittingly, from flying keys to red cloths over lamps in the divination area. Honestly I wish I had booked to see it at least three different times, just for how amazing it was.

It’s also worth saying how disabled friendly it was, with all members of staff being incredibly helpful, the shop being well spaced out, there being a lift option for all areas where there were steps, the exhibition itself easy enough to maneuver around. All in all, a pretty magical trip.

The exhibition is now sold out, but panic not! The accompanying book that is readily available has all the things you need to see in it. Promise I’m not being sponsored, just fully aware that there are millions of Potter fans, and only so many tickets.

It really was like being sucked into the world of Harry Potter, if only for a little while. We nipped across to the shop in Kings Cross after as well, to find some more exciting things. Here’s a picture of my HP charm bracelet with the new charms on!

My Ravenclaw charm came first, then my Hogwarts letter, then yesterday I found Niffler! My friend bought the Snitch, then in 9 3/4 found a set of four charms including a Snith, soooo one Snitch came to me, along with separators…. All of which have spells on them. “Obliviate”, “Stupefy”, “Alohamora” and “Expelliarmus”.

I’m a happy little Muggle today.

Painy Day – Adaption Examples

Today is the worst I have felt in a while. My legs feel like they are full of spikes, every time I walk. My vision isn’t focusing well. And, as if my uterus knows I said in my previous post that my pain had improved, it has flared, and had me back to gasping at pain lasting only for seconds at a time, but still intense enough to knock me down. 

It’s so incredibly frustrating.  Yesterday I told my doctor joyfully that at least we had an answer, and it has made so much difference to my pain. Today I’m in agony. It’s such a no win sometimes; as if all you have to do is think positively and your body sets you another thing to deal with. 

I’m dealing with all of this by taking morphine and resting. There’s not really much else you CAN do, which is a majorly irritating fact in itself, because again, it’s almost as if The Pain knows it would have a fight on its hands. 

Sometimes – when I’m half asleep at 4am or dosed up on strong meds – I picture my pain as a bully, one of the bastards who made my life hellt school. Always there, just waiting to attack you, making others laugh and call you names, having all it’s fellow bullies to join in if you ever challenge it. Nasty horrible creature. As it is, there is no benefit to this outlook; it just drags you down and makes you miserable. A far more realistic is to think about the position pain does pay in your life, and the control to your hands. This can be done im little ways and big ways, just bits and pieces to kick that bully back in place. For me, these include proper pacing, using my electric wheelchair, audible so I can still read but not cause a migraine, buying pre cut vegetables and having a good cocktail of medications to treat each component of my situation. 

How this works will be totally individual to all people, but is a satisfying middle finger to that pictured bully, if you can get on with normal things in am adapted way. Living life with a chronic illness is all about adapting, and whilst this fact is one which in an ideal world I wouldn’t be faced with, rather face it now than be worn out by ignoring it. Making adaptions doesn’t  mean making exceptions or exclusions necessarily.  For example, next week I’m traveling to see a friend for the day. On foot I would be tired within minutes of walking, and so realistically wouldn’t be able to go. Instead, I’m going in my wheelchair, have booked ramps at train stations and will be strapping up my weaker joints. I’ll still pay for it the week following, but by adapting the situation it will mean a special day. 

It costs an awful lot emotionally sometimess, adapting to your situation. I only it’s worth it when I do things like next week, and as I’m sat on the train watching the çapital drawing closer, knowing I’m doing something I wouldn’t otherwise manage, then the cost is so worthwhile. 

Something Wonderful

Last week I had my second round of Zoladex. I knew that having this treatment at all was going to be a bit of chance taking; we were working on a theoretical basis, even if the discussion surrounding Endometriosis was years old. (On a side note, this begs the question why Zoladex hadn’t been suggested in the decade I have been have gynecology treatment, but we won’t hold any grudges. Okay, not MUCH of a grudge.) It was based on the answers we did have, all of which pointed to Endo as the answer, just without the final confirmation. Zoladex was a way of finding confirmation in rather a crude manner; pain stops it’s Endometriosis, pain continues, it’s not.

Well, miraculously, wonderfully, amazingly – the pain has stopped.

Obviously I still have my other lots of pain, but this pain has stopped. It’s so absurd to say that. It’s stopped hurting. For the first time since my periods began, I haven’t had pain in my abdomen. In the fear of oversharing, for the first time since becoming sexually active, I’ve had pain free sex. I didn’t need painkillers afterwards. What we thought were food intolerances have stopped. I’m not in pain when going to the bathroom. I can bend over without my belly screaming. I even wore something with a bit of a waistband the other day. Admittedly this I could only manage for an hour before my body started to complain, but goodness knows that’s an hour longer than I have managed in who knows how long.

I’m recovering from a nasty bug at the moment, so I can’t judge completely how my body is tolerating the treatment, but the only real side effect that is having an impact is insomnia. I’m used to my various pains waking me up, and this is still happening with my fibro, so it’s not a real issue. Quite honestly I’ll take being awake at 3am if it means I can live more freely. I’ll see how the rest of the following weeks go before I judge truly how the Zoladex is being reacted to.

There is an edge of bittersweetness to it all. For years, I have been arguing that something isn’t right, that something has been missed or ignored, that I need to be listened to. I know that many people, especially women, around the world will be familiar with this. We simply are not listened to. It is easier to shut us down, shut us up, tell us to stop making a fuss, sometimes outright threatened (shout out here to the doctor know ‘affectionately’ as Doctor Dickhead who told me he could operate on me to see what was causing the pain but I “would”, not “might”, end up with a colostomy bag and would never live a normal life again, and anyway I was just making a fuss) into silence to keep us down and quiet. I was already sure in my suspicions that it was Endometriosis, though of course it’s natural, somewhere between common sense and the medical silencing, to wonder what if there is something else going on. For the pain to have eased to a stop, it gives me an answer, and whilst knowledge is a powerful  wonderful thing, in this case it simply leads to more questions. Where? What stage? How much? Fertility? Operations? What next? Maybe if the silencing around Endometriosis wasn’t as dramatic, I would feel more comforted in my new knowledge.

That’s not to say I’m not happy. My mood has massively improved with the change in my pain levels, and generally I can’t stop smiling. I know what’s going on now. I’m not imagining, exaggerating, lying or having repercussions from my sexual abuse, all of which have been implied or stated outright at various points over the last few years. I need to call my doctor today to sort out one of my medications, and I can’t wait to update her, as she has been almost as invested in this journey as I have been.

The pain has stopped. I’m already nervous about what will happen when we reach the end of the six month trial and I have to stop the Zoladex. I know I can handle whatever comes next, because I’ve handled everything up till now. There will be improvement and then there will be return to normal. All of that is part of the proof needed. This year will be a written off in relation to fertility, as the focus needs to be on getting my body to a state where it could cope with a pregnancy. This is a separate issue to get my head around, though I am handling it quite well 95% of the time. There have been moments of metaphorically stamping my feet (because if I actually stamped, I’d fall over) in sheer frustration from the whole situation we are faced with, but generally I am at peace with where I am, and where we are.

I feel so much better. I’m very tired, but as I say, I am recovering from a particularly unpleasant bug, along with the happy yet oh so tiring festive season, and the hormones, and the insomnia, and my other health conditions, so it would be remarkable if I wasn’t tired. It’s still far better than the amount of pain I had been in even two months ago, a memory I doubt will leave me no matter how far away I travel in both pain relief and time. I know the pain will have to come back when we reach the end of the six month trial, even if it’s only to prove a point, a temporary return whilst it’s decided what to do next, and this is hanging at the back of my mind as the days count down until the six month point.

But the point is – the pain has stopped! Just saying that makes me smile. The fact Zoladex is working, the fact I was right and not imagining things, the fact that I can tolerate foods again, the fact I can have pain free sex…. All of these are wonderful, wonderful things. Sitting with this knowledge is a brilliant start to this year, and I can’t wait to see what comes next.