Endo what now?

If you follow me on twitter you may have seen that earlier in the year I was really struggling with pain.  A few of you know what has been going on and for those of you that do I have to say thank you, from the bottom of my heart, for your support. Whether that be in a shoulder to cry on, a hand to squeeze, a lift to the hospital or just a message to check in, it has been greatly appreciated.

I have been admitted to hospital three times this year.  And between those times I have spent more time in A&E and my GP surgery than I care to remember, and this isn’t the first year.  I have been back & forth to the Dr with unexplained lower abdominal pain for at LEAST 7 years; probably more.

There have been tears, moments that I thought I would pass out (mainly in supermarkets, which is fun), oh and feeling so nauseated that even plain water made me want to vomit.  I sit in work clutching a heated unicorn to my belly just to get a little bit of relief.

Every single time I saw a professional I was told something different.  “Oh its just a bit of IBS”, “oh it’s just period pain” “could it be your appendix?” (no, that went aged 10 thanks!) “hmmm it’s probably a cyst”, “it’s definitely PCOS” (again, nope, you have to have other symptoms for that Dr).

My pain was NOT taken seriously.  I have been left feeling like a child who was being told off by those very people who are meant to be helping me.  I actually asked my friend to never take me back to the hospital as I didn’t want to see a certain Dr again as he made me feel SO bad, and this was AFTER my diagnosis! I would rather drive the extra few miles to another hospital or wait to avoid A&E in order to avoid this guy!

My pains are 99% certainly endometriosis; a condition, for those of you who don’t know, where endometrial cells (those that line the womb) grow in places they are REALLY not meant to, usually the pelvis, but there have been known cases of endo all over the body! And endo SUCKS. The symptoms can be horrible, it can cause infertility, sex can be painful (how shit is that!) and you all know about the pain that comes with it.

The reason that I am not saying its 100% is because unless they open me up and physically SEE endo cells they will never know for sure. And endo can HIDE! It can also cause ALL of the pain and only be a really small amount .

I have seen ONE Dr this year who took me seriously, listened to me, experimented with hormones and said “yep, there’s no other explanation. This is almost certainly endo…what do YOU want to do next?” I cried in that appointment. I have cried in most of my appointments to be fair but these were different tears. I cried tears of relief.  Someone had finally listened and not tried to tell me I didn’t know what was going on inside my own body. I chose to go down the hormone treatment route as that has worked for me in the past. Only time will tell how well this has worked, I may still need surgery, who knows! But currently…all seems ok!

But why am I making such a fuss? Well… read on.

There has recently been an article in the Independent that suggested period pain was of the same level of pain as a heart attack.
Now this headline was catchy but the more we read into it the more it became apparent that this didn’t mean all that much.  What WAS interesting was the idea that women have to spend 16 more minutes with a Dr than a man before the same pain is taken seriously. WTF?!

On 6th September 2017 the National Institute of Clinical Excellence (NICE) released guidelines for GP’s that basically say “take our pain seriously” and “think endo” (I mean, that’s not ACTUALLY what it says but, pretty much!)if you want to read it you can do so here.  But I think (and so do a lot of other endo sufferers) that there shouldn’t NEED to be a document that instructs Dr’s to listen to us!  Why is it that if a man has unexplained pain a Dr will listen and give advice but if it is a woman we are USUALLY fobbed off?  I KNOW when something is wrong in my body, I KNOW what IBS feels like (blergh!) and I KNOW the difference between IBS and the other pains I get. And I know other women in the same boat.

The more people talk about this illness the less of a taboo “women’s issues” become and hopefully the more serious we will be taken by Dr’s.  So let’s all start talking more.

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2017 what a year it has been

I haven’t blogged in a while.

There are a multitude of reasons but the main one is that 2017 has been a pretty sucky year and blogging just didn’t come very high on my priority list.

“Oh but why has 2017 been so rubbish?” I hear you say (well, I don’t but for the purpose of this post that is exactly what you said!)  Well…read on.

This year has been tough. Don’t get me wrong, there have been so absolutely excellent parts of this year (a post on that is coming near Christmas/New Year) but overall, I have had better times.

My physical health has been, well…mediocre at best.  I have had 3 stints in hospital this year, all with unexplained lower abdo pain…and every single time I have been told something different. I was usually given pain killers, kept in for a night and sent home with no plans to follow up.  Eventually I took matters into my own hands and was able to get a diagnosis of endometriosis.  I have a post planned for this but the short story is…I was in a lot of pain, every single day and there was nothing people could do.  I THINK I have it under control now (hurrah) but it could all change.  For now, I’m just happy that the pain is gone.

All the issues with my physical health have really messed up my mental health (which in turn has impacted other elements of my physical health – helloooooo weight gain!) I kind of didn’t really register how crappy I was feeling until I took a moment to think about it. I was plodding along ok. In the grand scheme of things, my mental state is ok.  In relation to a few years ago when I was unable to get out of bed…I am practically tigger like (bouncy, you get it?) But I have not been ME!

I thought that some of my friends were being shit friends, too interested in other parts of their lives for me. Actually, I was pushing them away and not saying yes to stuff as I just didn’t want to be with people.  I was pushing my mum away, which, if you know my mum & I at all, that is weird.  We are like Lauralie & Rory, so being distant with her was weird!  All of this is sorted now. I am still not ME but I am SO much better simply for noticing it and taking some time to look after myself.

On to the next and probably the worst reason for me being so bad at blogging this year…

I lost one of my best and oldest friends this year.  I have talked about it a little on both facebook and Twitter but actually I have been pretty closed off about it all.  Just writing those words made me cry.

Scott Waldrup. My crazy curly haired American friend, who I met on my 1st day at Queen Mary University (12 years ago).  The boy who supported me through too many hangovers, boy dramas, coursework disasters and performance breakdowns. I have never met another like him & I don’t think I ever will.

He lost his life thanks to gang violence in Savannah, Georgia.  He died saving other people from being run down by a car fleeing the scene of a drive by shooting on his favourite day of the year, 4th July. He was always my hero, now he is other people’s hero too.

Losing Scott hit me HARD. I was actually sat in Bills Restaurant at the time; about to go to the theatre. I got a message from a friend who wanted to tell me before I saw it on Facebook; a gesture that I will always be grateful for.  I sobbed my way through dinner and then through Romeo & Juliet, not giving a damn that the school girls next to me were talking about how “it’s not that sad” and saying “oh my god I can’t believe she’s crying”.

3 days later I was on a plane to Ibiza for my cousins wedding, having to hold myself together to enjoy myself as much as possible; whilst the whole time my heart was broken and my womb was trying to kill me (my period started the day of the wedding!) Coming to terms with a death and being hormonal is NOT a good mix.  Don’t get me wrong the wedding was AMAZING and I was SO happy to see my cousin get married, it just wasn’t easy to get through the week.  I MAY blog again about Scott and what has happened since. I think there is a story to be told but I am not sure I am strong enough to tell it yet.

So…there you have it…2017 has been tough.  HOWEVER, I have worked out who my true friends are. Those who are willing to drop everything and drive me to hospital, those who were willing to travel across the country to come to my 30th, those willing to travel with me to make sure I turned 30 somewhere awesome.  I have also developed some amazing new friendships with people who I feel will always have my back and I will ALWAYS have theirs. I won’t name names as I know they will not want that but I do hope they know who they are.

I also saw a post on FB the other day that read “may the last 3 months of 2017 be the plot twist you have been waiting for” I am going to MAKE them be and live by the new moto all of Scott’s friends have pledged… What Would Scott Do?

Hopefully this is the start of more blogs. I have lots of stories to tell…