endometriosis, Fertility

This illness is ruining my life…

So this week has been the worst week in a LONG time.

Only as recent as last week I was feeling the happiest and most positive I’d ever felt. I’m married, to the love of my life, I have an amazing job with absolutely wonderful colleagues and students, and I’m getting my own business off the ground.

I thought I’d finally ‘made it’.

Then, Monday morning hit.

I was in agony. The most pain I’ve been in since before my surgery (which, by the way, was nearly a year ago now!)

I struggled in to work and tried to battle on with painkillers.

Like I mentioned before, I absolutely love my job. I’ve been there just over 2 months now and it’s the most wonderful place to work. I have amazing, supportive, understanding, encouraging colleagues who are genuinely lovely human beings. The students I teach are also great – too often they are written off by society because of the area they live in/are from, but they are honestly wonderful characters and they make my job a joy and a pleasure to do! My lovely manager tried to send me home at Monday lunchtime, as I think she could see how much I was struggling. I refused. I wanted to make it through to the end of the day, as I had a horrible feeling in the pit of my stomach that this stupid pain was going to keep me off for a lot longer than an afternoon.

I was right.

I’ve been off the past couple of days in the hope that some holistic therapy, pain meds and rest would help me to feel better.

It didn’t.

I’m worse.

I went to see the doctor this morning.

She was horrible.

I don’t ever remember having an appointment with her before and I don’t ever wish to again.

She didn’t know anything about my medical history and told me to “shh” while she spent 10 minutes reading my extensive notes (surely she should’ve done that BEFORE my appointment?!)

She continued to be rude and abrupt with me and told me she was sure my symptoms weren’t down to endometriosis.

knew they were because I know my own body and I’ve been dealing with this illness for the past year (probably longer, albeit undiagnosed).

I was then prodded and poked in all of the areas on my abdomen that were in agony, for her to tell her it was probably an ‘inflamed bowel’ then an ‘inflamed appendix’ before she finally put me through the humiliation and extreme pain of an internal examination.

She then changed her mind and decided that my scar tissue was probably infected, that I’m unfit to work for at least a week and need a double dose of strong antibiotics.

Great.

Just fucking great.

Here we go again.

She still wouldn’t refer me to my consultant and at one stage told me to put my phone away after she’d told me to check when was best for an appointment next week.

I’ve never in my life complained about a GP, even though I have had so many reasons to in the past 12-18 months.

Now, after complaining, I magically have a referral letter that will be ready for collection tomorrow morning, along with a follow up appointment with the Senior Doctor next week.

Totally and utterly ridiculous.

I’m sick of the total lack of understanding for my condition and I’m sick of having to battle for help when I say I’m in pain.

I’m so scared of not being able to work when I’m finally in a job I love and in an amazing workplace with wonderful people.

I’m scared that I’m going to get worse and never be able to work again.

Just when I felt things were going well for me, and I was truly happy, my body gives up yet again.

I feel like I always complain when I come on here, and I’m sorry for that, as I’ve had a really happy few months.

Sometimes, you just really need to vent, don’t you?!

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Fertility, Uncategorized

Hope is being able to see there is light despite all of the darkness…

I’m here.

Just about.

I really really miss writing (well, blogging) so I’m tentatively poking my big toe back into the word press water.

That was a pretty good metaphor… even if I do say so myself! (Typical English teacher! Always has to analyse everything that’s written down!)

I honestly don’t know where to start… and I actually doubt anyone has really been wondering where I’ve been for the past couple of months, as the state of mind I was in when I wrote my last blog post made things very clear.

There’s not a lot I actually can talk (or write) about. It’s a long story that I will probably never be able to tell to anybody asides from the one person in the world who is closest to me (that being, Mr Mad, of course).

Speaking of Mr Mad, we are exactly 29 days away from our wedding!

That time has gone by so so quickly, I can hardly believe that in less than a month I am going to officially become Mrs Mad!!

I wish things were better at the moment.

Not with Mr Mad and I, that, thanks to him being the world’s loveliest, most supportive partner, is the only thing that’s going right in my life currently.

The endometriosis is rearing its head… or, rather, creeping back in and trying to take over my body again.

I honestly wouldn’t wish this illness on anybody.

Well, maybe the person or people who are…. I’d better stop there, for fear of repercussions, you never know who might be digging or lurking for things that don’t even exist…

Anyway, today has consisted of mostly lying on the sofa under a blanket with a hot water bottle.

Now I am in bed, for a change of scenery, propped up with a gazillion pillows,  and a hot water bottle with a half-consumed cuppa resting on it.

Some people may think that’s an awesome way to spend a day… but, for me, it isn’t.

I’m struggling with pain.

It was this time last year that I really really began to struggle with pain, which I later (6 whole months later) found out was severe, stage 4 endometriosis. I know this because an old Facebook status came up on my Timehop yesterday, where I was complaining about deferred pain.

I’m starting to realise that I may never have what I consider to be a ‘normal’ life ever again.

This illness… it’s got me… despite the fact that I constantly try to fight back, it has me in its grips and it will never fully let go…. I will never be fully rid of it.

For the past couple of weeks I have had hope…

I have had hope that things will get better.

I have had hope that all of the darkness in my life (and I say all of, because there is an awful, awful lot of darkness in my life right now) will somehow lift and things will be right again.

Today, mainly because of the endo flare up, I am mostly in agony, feeling incredibly negative and rather tearful.

I know life isn’t fair.

I get that… it’s actually something I’ve only recently started to properly understand and accept.

But what I can’t get on board with at the moment is why, when things are just starting to improve for someone and their life seems to be going okay for once, somebody comes along and tries to destroy that for them…. tell me, what kind of person would do that?

It’s taking all of my effort, currently, to not become a total recluse and never leave the house.

And I actually mean never leave the house… not just what I’ve been doing recently, which is only leaving the house to attend therapy, pain-relief clinic at the doctors and reflexology. Let’s face it, that’s not much of a life as it is, really, is it?

Gosh… I actually planned for this post to be hopeful and full of positivity, as I’m really trying to find the light at the end of the tunnel and the hope in amongst everything that is going on right now… evidently the darkness in my life is too great at the moment.

It’s very lonely being stuck in the house on your own all day everyday.

It gives you an awful lot of time to think.

To think, and to draw conclusions.

Currently, there are two big question marks over two things I need answers to and I need to draw conclusions on, but can’t seem to.

  1. What do I do if I never have the blessing of a child?
  2. What do I do if I can never teach again?

Answers on a postcard….

 

 

just kidding!

 

hope

Fertility

Tell me it gets better…

Tell me this empty feeling goes away.

Tell me the tears, the agony and the heart break fade.

Tell me my heart will slow down enough for me to breathe properly.

Tell me I will be able to eat properly again.

Tell me I will be able to pick myself and dust myself off before tomorrow so I can go into work and I don’t lose my job for having too much time off.

Tell me people will stop telling me “if it’s meant to be it will be” and “one day you will have a baby” and “no doctor has officially told you you’re infertile and can’t have children”.

Tell me one day this huge house will be filled with the tears and laughter of a child we created out of love.

Tell me one day this pain will end and I will be happy again.

Tell me it gets better…

please tell me it gets better…

Post-operative healing

Chapter 1…

chapter 1 edit

These past few days have been days of “firsts”…

The most important “first” was my first period…

Obviously not my first period EVER (I wish!!) but my first period since surgery.

I was warned by multiple people who have had the same (or similar) surgery to me, that the first period after surgery would be hell on earth, and they certainly weren’t lying!!

Yesterday I woke up in absolutely agony, thinking, “oh god, my uterus is trying to kill me, AGAIN!”

It got progressively worse throughout the day, despite painkillers and another first (the first bath since before my surgery!)

However, I am really trying to be positive.

It’s difficult because I really thought surgery would help go a long way to solving my pain, and at the moment it is really feeling like it hasn’t.

But… having read countless stories like mine, this doesn’t seem to be unusual so soon after surgery, and I’m hoping next month (well, firstly, that it well actually be next month and not two weeks like it has been for the past year) I won’t be in as much pain.

As a result of aforementioned first period, I am not really feeling much better. I am also incredibly bored, trying to rest and relax at home, it’s much more difficult than I ever imagined.

Anyway… let’s loop back, because this post is getting both boring and tedious, rather like my day to day life at the moment!

Another first… I’ve just ordered a pair of maternity jeans off eBay.

Yes, you read that right… maternity jeans!

Currently I am still HUGE, or rather, my stomach is still HUGE.

I am supposed to be visiting beautiful Paris with my best friend and her family at the end of July, and I am concerned I will still be huge when I travel. I currently can’t fit into any of my normal clothes and am slobbing around in pjs for most of the day. The only times I have been dressed in relatively ‘normal’ clothes have been the handful of times I’ve left the house, and even then I’ve been wearing a maxi dress or loose joggers. I am really trying to not feel negative about the fact that I look like I have a pregnancy bump when it’s the absolute opposite, and rather try to embrace the fact I am slowly getting better and this is part of the healing process. That being said, I am so uncomfortable and so nervous about looking awful in Paris, that I’ve succumbed to maternity jeans in a bit to be comfortable and look relatively nice too. Any other suggestions would be much appreciated, as we have a charity event to go to on the first evening as well, and I have no idea what I will wear to that!

I guess the fact I am focusing on these kinds of things means I am getting better, as I’m not in complete and total agony all day everyday like I have been.

Now, time to watch some more White Collar and wish Matt Bomer was A) Not gay and B) My future husband!!

Neal_Caffrey's_moto

Post-operative healing

“Oh my darling, you are nowhere near ready to go back to work…”

So today I saw the lady who is covering for my normal GP while she is on holiday. While I wouldn’t say I’m the world’s biggest fan of my GP after the battle I had to fight for a diagnosis, I do like her, and there is something remotely comforting about the familiarity of seeing the same person every time you go in to talk about your “female problems” (which, for me, has probably been on at least a bi-monthly basis for the past 12 months).

This “cover doctor” (is that what you call them?! I’m not sure what you call them! You can tell I’m a teacher!! ‘If there’s somebody doing someone else’s job while they’re absent they must be a cover blah blah because the lady teaching my classes while I’m off is a cover teacher.’) Anyway, the queen of digressions has digressed again!

Where were we?

Ah, yes.

Cover doctor.

A petite, white-haired woman at least in her early 60s, who turned out to be the bolshiest (is that even a word?! Well, it is now, I’ve decided!) Swedish woman I’d ever met (and, believe it or not, I have met quite a few Swedish women in my time!)

I sat down, a little petrified, and also sweating from the crazy hot flushes that seem to be plaguing my otherwise “young” body at the moment (that’s what everybody keeps saying to me, y’know, “Oh you’re young, you’ll get through this no problem!” Like that isn’t annoying in the slightest…). I was worried for the following reasons

  1. It wasn’t my normal doctor and I really didn’t want to explain everything all over again.
  2. I was worried about being told to take more time off work when I want to be there, and I miss it, and I miss my colleagues, and I miss my kids (and the list goes on and on and on….despite the fact I tell aforementioned kids to never ever use ‘and’ more than once in the same sentence!)
  3. I have severe social anxiety anyway (yeah, I know, hilarious for a teacher!!) and am always incredibly self-critical and conscious of what people are thinking about me… or, rather, what I think people are thinking about me, because, contrary to what my brain tells me a lot, I am not a mind reader! Funnily enough, this anxiety only kicks in when I’m around adults… never children!

With these things in mind, I take you back to little old me, with my huge tummy, sitting, sweating profusely, on a little red plastic chair, in front of Swedish-cover-doctor-lady.

I opened my mouth and uttered the words, “12 days ago I had a laparoscopy with excision of endometriosis, as well as a…”

She stopped me there.

Not so much as interrupted me, but stopped my speil.

“Oh my darling, you are nowhere near ready to go back to work yet… 12 days…. zis is serious surgery my dear. Let me look at ze notes.”

(I am aware here that in typing her accent I could be seen to be partaking in a little cultural appropriation, but I am not, this is exactly how she sounded, and it was unexpectedly comforting for me!)

Cover doctor studied the letter sent by Dr Busby (remember, my amazing, wonderful, brilliant, miracle-worker of a gynaecologist?!) (That sounded sarcastic… it’s not meant to be, I do literally worship this woman!).

She then asked me to lay down on the bed.

“I vill examine at your tummy.”

As it turns out, she didn’t really need to…. the moment I pulled my dress up there was a sharp intake of breath and cover doctor said,

“Oh my goodness, my poor darling, no you are not healed, you must rest, you must sleep, you must get better.”

It would have been comical if it wasn’t so disturbingly true.

She did examine me. I just wanted to clarify that – so you all know Swedish cover doctor is doing her job properly!

She also took my temperature and was really not impressed! Apparently it was “borderline” and I have to monitor it very closely as I could be developing an infection.

Oh the joys!

She explained to me that while my external wounds may look small, my internal wounds are not and that I had had major surgery and should not take that lightly.

Suitably dressed down and actually also feeling a little relieved, I left with a sick note for a further two weeks.

I’m still not entirely sure how I feel about this, but I know I must take the doctor’s advice. I can’t afford to make myself worse by not recovering and healing properly, as I most certainly don’t want more surgery and more time off work (especially when I’m in a job I love so much!)

So, my lovely, ever-growing list of followers… Please promise me something…

Promise me you will make sure I rest properly and take time to heal?

I am rubbish at sitting around, sleeping, resting, doing pretty much nothing, but that is what I need to do. If I am to get better, I need to listen to my body rather than my mind for once.

Now… how do I go about relaxing?!

Fertility, Post-operative healing

The Biggest Wobble Yet…

Today I feel awful.

I honestly feel like I can’t go on anymore.

All my positivity has completely vanished out of me and I feel completely broken.

My body isn’t happy – I know this because I know my own body.

I am in agony.

I have tried to get back to normal and, every time, my body tells me “no” “You’re absolutely not ready yet, stop trying to push yourself. Go home, sleep and rest.”

Nobody told me recovery would be the hard part.

I thought I would have my surgery and I would get better.

Alright, I knew there would be a bit of time while my wounds healed.

But then I’d be back to normal – surely?

Well, not even normal, the normal I was before this goddamn illness stole who I was.

That’s the thing with endometriosis, and I’m honestly starting to wonder…

Do you ever go back to the way you were?

Do you ever have a ‘normal’ life again?

Does it ever truly go away?

I know there’s no cure.

But the consultant made it seem like I stood a chance of being okay again.

“There’s a 30% chance it will come back.”

That’s a statistic I thought I could live with.

I foresaw me getting my life back. I saw me being pain free and having a future.

Right now, currently, in this moment, my pain is worse than before I had surgery.

My superficial wounds seem to be healing okay, but my internal ones don’t feel like they’re healing at all.

My hormones are all over the place – worse than ever before.

My pain is worse than it was and I’m still dosed up on cocodamol (which was supposed to be a short term solution, and I’ve now been on it for 3 months).

Today I’ve completed the tiniest of tasks and this has resulted in me drenched in sweat, sitting on my sofa, unable to move, sobbing my eyes out.

This is what I’ve done today:

  • Got up
  • Had a shower
  • Made my breakfast
  • Ate my breakfast
  • Watched Jeremy Kyle, This Morning, Loose Women and Judge Rinder
  • Looked at some school work then realised my brain fog wouldn’t let me do anything productive
  • Nipped out to the garden centre to buy some compost

Surely those don’t constitute strenuous tasks?

And it’s the same each time – I’m no better – there’s no marked improvement.

Since coming out of hospital a week last Friday I have left the house 3 times. One of those times was to be driven 5 minutes around the corner to my in laws house, where I ate lovely home cooked food and sat propped up on their sofa for 3 hours. Again, hardly strenuous tasks.

I’m petrified.

I am due back at work on Monday, and I literally have no idea how I’m going to teach for 5 hours a day when my body is like this.

I feel like I’m letting everyone down.

I’m part of a team and I haven’t been there to contribute for weeks.

I haven’t even been able to help them mark the piles of exam papers they undoubtedly have.

I feel like an awful, awful person. I am literally no use to anyone right now.

Everybody who has had this procedure span things in such a positive light. So much so, I thought I knew what was coming. I didn’t even hesitate signing that consent form. I thought I would be fine. In fact, I thought I would be more than fine, I thought I would be better. Now I’m wishing I’d just carried on dealing with the pain, because at least I was at work. At least I was doing something, instead of just being a huge pointless potato consuming ridiculous amounts of daytime TV and crying on my wonderful fiancé every time he gets home from work.

 

Fertility

We are not living in eternity…

begin

It’s a week and one day since I had my op to remove endometriosis from most of my abdomen. Of course, if you’ve been following my mumblings and musings you’ll be more than aware of that already!

This morning I woke up and realised I still have a long way to go.

Yesterday I left the house for the first time since before my op and went for a short walk. It was difficult, but I managed. Then we had some lovely friends visit in the evening which ended up turning into a late one because we got talking and lost track of time! I don’t think this late night helped me much, as I had a very broken sleep and, as a result, have felt shitty all of today.

My fiancé is also back at work today, so I have to fend for myself! I am coping, just, but more than anything, I miss him! I thought we were at the point in our relationship where we didn’t have the longing to see each other and missing each other incredible amounts when we’re apart, because we’ve been together for so long! But today especially I am really missing his company and his humour! I am not normally this much of a sap, but apparently the events of the past year or so have turned me into one!!!

I am still clinging on to the hopeful feelings I felt at the start of the week. I am trying to remind myself of all the positive changes I decided to make, waking up from surgery. I had my first reflexology session yesterday, which was amazing. I have another session booked for next week. I am reading a book on the holistic methods to fertility and conceiving. I am also reading another book called “f**k it therapy” which is helping me to balance out my life and let go of all the negativity I seem to unwittingly harbour.

Slowly but surely I feel I am not so much on a new journey, but on a new section of my existing journey… a new path, if you like.

Many people, when asked what their dreams are and what they want, money being no object, they talk about travelling the world and going on crazy adventures. All I want, all I have ever wanted, is to bring up my own family. I am happy and grateful that I am on the path towards realising that dream. I may still have a long road ahead of me, I may not. Who knows?

But what I do know is, I’ve survived something massive.

Just now I received a copy of my consultant’s letter to my GP with regards to the surgery I had. Reading through it and seeing the words there in black and white really hits home to what I have been dealing with inside of me for all of this time. I now understand why I was in so much pain. I now understand why I couldn’t conceive.

“This patient had laparoscopic excision of endometriosis, adhesiolysis and hysteroscopy and endometrial biopsy today as planned. The operation was performed without incident.

The findings on hysteroscopy were a healthy cervix and normal cervical canal, regular uterine cavity with normal appearing endometrium. Both tubal ostia were seen. Laparoscopy revealed a normal uterus and normal tubes and ovaries bilaterally. There were significant amounts of endometriotic deposits in the ovarian fossae bilaterally, the pouch of Douglas and the utero-vesical fold. These were all excised in their entirety. The ureters were identified prior to excision. Her sigmoid colon was adherent to the left pelvic sidewall and these adhesions were released to facilitate safe surgery.”

I am so proud that my body has been through all of that and survived. I will be even prouder when my body creates a life and brings it into this world.

As women, I think we are fantastic. We are heroes. We are warriors.

I know most of my followers, as well as the people I follow on here, are lovely ladies who are struggling to conceive. I want to tell you to not give up hope. We will get there. We are strong and beautiful and we are fighters. We are not giving up. One day, we will hold our beautiful babies in our arms and we will realise all of this heartache, struggle, pain, pressure, lack of understanding from others, suffering and agony will all have been worth it.

Trust me.