Endometriosis. How I hate thee…

Here’s a challenge I’ve set myself; write a blog about living with endometriosis, and make it funny, inspirational and try not to moan too much about it.

Before I start, I just want to say that I acknowledge that there are lots of people who have medical issues that are far, far worse than my own. This is not a competition in misery (I’m far too laid back to win that one) this is merely a reaction to this stupid, horrible and unfair condition.

For those who don’t know, endometriosis is a gynaecological condition which affects women of child-bearing age. Essentially, bits of stuff that should be inside the womb, are set free by your treacherous body, and make their home outside of the womb, and cause you more pain than you want, by doing so.

But it’s a weird one. Some people have very mild cases of endo, and some experience the other side. And even though it is estimated to affect around 2 million women, diagnosis is tricky because symptoms are similar to a plethora of other things, and because it exhibits so differently in different women. The only definite way to confirm it, is by having minor surgery in a laparoscopy. Which hurts.

I was diagnosed with endometriosis when I was 31, and it was a relief to have a name to put to the pain I was experiencing. It’s likely that I had endo for a good ten years before diagnosis, but because symptoms include pain, bleeding, tiredness, pain, discomfort, infertility, pain, exhaustion and pain, very often women are dismissed with a curt “it’s time of the month related” diagnoses and told to take 2 paracetamol and have a duvet day with a hot water bottle.

I spent years assuming that I was just a massive wimp when it came to pain, and that all the other women I knew didn’t seem to let their periods affect them like I did. I remember walking to 6th form when I was about 17, and collapsing on the street with agony. I was bent double on the floor, completely unable to get up. I assumed I was going to die. A kindly motorist stopped, picked me up and drove me home. I went to my (male) GP who informed me that it was just a period pain, and who told my mother that teenage girls are prone to over-dramatizing, in order to get a day off school.

So, I carried on throughout my twenties, experiencing serious pain every month, and putting it down to my general wimpishness. I mainlined cocodamol, made best friends with a hot water bottle, and spent around 3 days of every month crying.

So, when I was diagnosed, the first thing I felt was complete relief. It wasn’t my fault. It did hurt!

So, I joined a couple of societies to get some tips and advice, and share stories. What I found was that lots of women – just like me – had gone years being dismissed. Often by other women. My co-endos have been told to “man-up” (nice), “grow a pair” (nicer) and just get on with it, because all women go through it.

It’s NOT like period pain. It’s just not.

Here are some of the things that endo sufferers go through. Some are my experiences, some are others, some are both, but all are real:

  • Waking up and being unable to put your feet on the floor to support your weight, as you are temporarily paralysed by pain
  • Being unable to go out of the house due to blood clot passing. Frequent and heavy
  • Marking off the dates on your calendar and not making any plans for around 3-5 days every month, because it’s doubtful you’ll be leaving the house
  • Being pathetically thrilled when it starts on a weekend, because you know that you probably won’t have to phone in sick to work. Again.
  • Going to the toilet at 1am, and still being there at around 3:30am. Every night for 4-5 nights. Because it’s the only place you feel you can safely not make a mess, and because your stomach feels strangely relaxed when you’re bent over in a crouching/seated position
  • Crying. Solidly. For hours. Because even though you know it will pass, you also know how much it will hurt before it passes.
  • Feeling pain in your shoulder, kidneys, back, calves, stomach and lower arms. Because these are somehow linked to the lining of your womb. Don’t ask me. I’m not a doctor
  • Not allowing anyone to touch your skin, because it burns
  • Nosebleeds. Frequent nosebleeds
  • Hoping that the dog won’t run off his lead, because the act of raising your voice might make you throw up
  • Throwing up. Suddenly and without feeling sick first. Then feeling sick after.
  • The agonising, doubling-up pain, which can last for days as it comes in waves. Making it untenable to walk, sit, lie or be still comfortably
  • The fear that you will pass out, due to blood loss, anaemia, or just queasiness
  • Lack of appetite
  • Acne
  • Infertility
  • Pain during sex
  • Burning sensations in your stomach
  • Longer and more frequent periods
  • Dizziness
  • Realising that endo can strike twice a month – as you menstruate and as you ovulate. Bonus

For me, I have tried to describe it to my nearest and dearest, as I sit in the corner of a room, with my face pressed against the wall to try and cool me down because I’m burning up. I find the foetal position helps with the cramps, but not the clotting. It feels like someone has reached inside me with a fistful of razor blades and lit matches, with the sole intention of twisting and pulling my insides out of my body. At the same time, someone else is punching me in the kidneys and pressing my forehead on both sides. Nothing works to ease the pain, and so – coupled with the hormones of menstruating as well – I either cry or shout or both, knowing how unreasonable I sound, but being powerless to stop. I can’t read the story of “The Wolf and the Seven Little Kids” where a wolf has several large boulders sewn into its stomach, because that is how I feel for around 5 days of every month; that there are boulders inside me, pushing down, accompanied by a burning, cutting feeling that affects every facet of my body. In bed at night, my body is freezing, but my face burns up, so I cannot get comfortable. I sleep on two towels. I don’t really eat or drink much, because I feel like I’m going to throw it all back up. I often do. There is no cure, so I know that this is going to happen at least 12 times every year. Some months are worse than others but I never know which ones in advance. In the last fifteen months, I have been hospitalised twice.

And then there is the elephant in the room, and the bit that makes my (already boiling) blood boil.

Infertility.

Endometriosis sufferers often have primary or secondary infertility. Me? Full blown infertility, no chance of conceiving. I know. I’ve tried.

Which makes me so angry, because the sole point of sodding periods is that they prepare your uterus to receive a fertilised egg. That is the whole point. So why on earth should there be a condition which makes these periods so painful and debilitating on such a regular basis, and make the sufferer feel the pain far, far worse than most people, and yet have no actual purpose, reason or function, because the uterus in question doesn’t bloody handle the fertilised egg at all. There is no fertilised egg. Pregnancy doesn’t actually occur. Why give endo sufferers shitty horrible painful periods that have absolutely no use or end product?

I do realise that I am pissing into the wind here, by the way. I know there’s not a clinician sitting on a cloud, handing out illnesses and conditions, and consulting medical committees on the best way to screw earthlings over. Although, it would be better if there was, because then there might be a complaints division, and I’m quite good at complaints.

But, no. Endo sufferers are generally left to it. Diagnosis remains unclear for many, and usually only an eventual concession. Even after diagnosis, the treatment still seems to be “invest in a good hot water bottle, and shares in Nurofen, and batten down the hatches” for a (sometimes) pre-determined period of time each month. I say “sometimes” because another jolly symptom can be irregular periods. Which is bloody lovely when you’re trying to conceive. The only relief that can be offered is more laparoscopies, to remove the patches of endometriosis and scar tissue. But this is only temporary, because after it is removed, it is likely to start building up again.

So, it’s a kind of lonely condition. Partly because of the issues with diagnosis, partly because other women have period pains and so the consensus is that it can’t be all that bad, and partly because there is still a taboo when it comes to talking about “wimmin’s ishoos.” People are weirdly coy about the “down there” stuff. I know women who hide tampons in their shopping basket so other people can’t see, and who select checkout cashiers who are mainly older women, as opposed to teenage boys. I’ve seen teenage boys smirk at girls who have sanitary protection in their school bags, and I’ve seen and heard parents whispering about their daughter’s periods as though she’s got a detention. We might as well walk around with someone ringing a bell in front of us shouting “unclean…unclean…”

Periods are a fact of life, and they involve blood and bleeding, clotting and cramps. For some of us they involve an awful lot more, and if I’ve got to go through all of the above every shitting month until Mother Nature decides I’ve paid enough penance for sins I must have committed in a previous life, then I’m damn well not going to shy away from talking about it.

Fellow endo sufferers everywhere…I (very literally) feel your pain.

Now…bring on the menopause (YIPPEE)

First World Problems…When Complaints Bear Fruit!

As you may have noticed, I can be a bit publicly moany. But sometimes, being a bit publicly moany can actually get results, whereas being a bit privately disgruntled gets you nowt.

I thought I’d share a success story. The names have been altered, to protect the innocent me because I don’t want to get sued

Here is a little email that I sent to a Generic Mobile Phone Company:

Hello there Generic Mobile Phone Company:

How are you? Well? Good.

I’m not so good.

Allow me to explain:

The reason I’m not feeling so hot at the moment, is because of something that you (not you personally; you, The Company you) have done. And I just feel that I should let you know about your customer “service”. You may have noticed that I used quotation marks around the word “service.” It’s to highlight the irony. Because, service is sadly lacking in some parts and is shoddy, at best. As a positive (I was always taught to follow negatives up with positives) you (you, the Company you – I can’t review you personally) are excellent at selling. You genuinely can’t do enough for me, Mrs Customer, at that crucial stage where I am about to sign up for a commitment to you (you, the Company you.) But, once the selling is done, it all goes a bit downhill, doesn’t it? Once I’ve signed over a bit of monthly salary for two years, and you’ve got me – what then? If I dare to have a problem…well, that seems to be a different kettle of fish entirely.

Allow me to explain:

One day what happened was this – my mobile became unusable. I was unable to download anything, I was unable to purchase anything, and I was unable to get online. And then, suddenly & for no reason, after 3 months of ownership, the screen went completely black. So I took it into my local shop who sent it off for repair on 21st March.

I was comfortingly told, that I would have my phone back within 14 days, unless there was a big problem, but I would be kept informed at all times.

14 days came and went, and I was left uncontacted. If you know me (which you don’t) you’ll know that this is the sort of thing that makes me make this noise: “Grrr”

So, I waited another 3 days (just in case you were operating on some sleepy European time-scale.) But, after 17 days, of being phone-less I had heard nothing. So, what I did was this – I called the shop and explained that I wanted to know what had happened to my phone. The woman on the phone “listened” (there are those quotation marks again) to everything that I had to say, and then “helpfully” (do you see the pattern?) told me that my phone had ben sent away for repair.

I knew this. So I tried to progress the conversation.

I asked for any update on how my little patient was doing, and she told me: “It’s nothing to do with us – we don’t have it”

I knew that she didn’t have it, because I understand the concept of “sent away.”

Eventually, and after much cajoling on my part, I wheedled a contact number out of the woman who took my call, and I even got my repair number, although she did sullenly tell me I could obtain that myself from my paperwork. I mentioned that I was on the phone and it would be easier if she could just tell me what it was, and she said “I’ll have to boot it up and it’ll take ages. Do you want me to have to do that?” I did. I allowed her to boot it up. I thought it would be the most convenient for me. The customer. The paying customer.

Obviously, having to respond to a customer’s request during her paid working hours ruined her day, but I fear that I simply do not care…

So, armed with my spanking new contact number and my individual repair number, I decided to call your “repair hotline” (that is what you, The Company, call it. It is not an accurate name)

I tried to phone your fabulous repair “hotline” on no less than 18 occasions. Each and every time I called, I was advised by your robot that I was in queue position “1” and each and every time I called, something very strange happened – my call was cut off on each occasion after 4 minutes and 40 seconds, and I was simply told to email you from my phone as an alternative. I can’t email you from my phone – you have got it. Which is why I’m trying to phone you.

I don’t know if you’ve ever read Joseph Helier’s rather excellent classic work of fiction “Catch 22” – this strikes me as a modern-day (albeit more simplistic) interpretation of the conundrums faced within that novel. If you haven’t read it, may I suggest you do. It’s very good.

Right – back to this communication, and my reason for initiating it:

Generic Mobile Phone Company:– I just want to know where my sodding phone is, and if there’s any chance I’ll get it back within a reasonable amount of time, so that I can (if I wish) email, phone and take photographs using the phone that I am still paying a monthly charge for (bravo on that, by the way. Bravo.)

In terms of your customer “service” – do you know, (or care) how frustrating it is for a customer to have their call constantly cut short? Why do that? Why put me in position 1, and then snatch the promise of speaking to an actual person clean away from me? 18 calls at 4 minutes 40, is over an hour and a half of my life, that I will never get back. And that I am paying for. I am also without a mobile phone, which is a huge inconvenience. I am resorting to putting my sim into an old handset, which doesn’t really work properly (touch screen doesn’t respond to touch – NATCH) for emergencies, but this is proving fruitless also.

Look, Generic Mobile Phone Company. I just want my phone back. Or at least an approximation of when it’s going to happen. Or the opportunity to speak to someone who knows where my phone is.

Who’s going to help me out? Come on – there must be someone.

I would also like to take this opportunity to explain why I have emailed this account instead of using your contacts facility. Your online contacts page doesn’t really give me enough of an opportunity to explain myself. If it was more accessible, then I might have just sent you a brief complaint and left it at that. But the fact that you make it virtually impossible for anyone to send you any negative queries just makes my blood boil. It gets my sarcasm going. And then this happens. Do you see?

With that in mind, may I suggest that a) 3000 characters is nowhere NEAR enough to enable me say what I really think and b) when you ask how I would like you to respond to my request, in this instance offering me the choices of “text” and “call to mobile” is, once again, a little shortsighted. If you respond to my complaint with a “text” or a “call to mobile”, then you (the Company, you) will get to read it before I do. That just seems silly.

So that’s why it’s this way, rather than try to utilise the rather difficult-to-access complaints procedure on your website

May I also take this opportunity to “congratulate” you on your fine “Question and Answer” section. When I asked “How Do I Make A Complaint” you suggested I meant one of the following:

How to make a complaint against a third party provider

How to make a complaint regarding nuisance texts

How to make a complaint regarding nuisance calls

Complaints about online billing

…but nothing about how I might make a complaint about you….. I do hope I’ve found a way…

Yours in eager anticipation

Bectora Morrisio

My Reply:

Thanks for your email Bectora advising me that you would like to know your repair status.

I’m sorry if you still needed to get back to us about this matter and I know how important it is for you to know the progress the repair. I’ll be more than glad to sort this out for you.

I can understand that you preferred to receive an email response however, I feel that your concern can be best resolved over the phone and you might have follow up questions about your account. Hence, I’ve decided to try to call you on this numbers 079******93 and apparently, I’m unable to get in touch with you.

Bectora,, I appreciate your comment about our customer service, rest assured that this will be taken care of immediately. I will send your feedback right away to my manager so he’ll be able to cascade this to our next level of support and will be addressed right away. It will be cascaded to everybody so our service will be improved in the future.

I’ve consulted our repair team for you and I was advised that your phone was received on 25 March at around 12:36. Once it has been received it may take up to 14 calendar days to be repaired and returned to you.

Furthermore, you may get in touch with our repair centre through this helpline number
************* so you’ll also be advised what exactly the progress is about your phone. However, you can still always monitor your repair status through our website by clicking HERE

Moreover, as gesture of goodwill, we’ll compensate the number of days you’re unable to use the service and I would also like to offer you one free month of phone usage as a gesture of goodwill for the inconvenience that you have been caused just please get back to us once you receive your phone back so we’ll be able to effectively add the credit on your account

If you wish to further discuss this matter, you may reply to this email with your alternative number and the convenient time to call so I can arrange a call back for you.

Thanks again for your email Bectora,I hope this puts your mind at rest and I’ve explained everything clearly for you.

If you have any further queries, please feel free to reply to this email

****************************

Result!