I am not unreliable. My illness is.

After having yet another troublesome half a year, health-wise, I once again find myself in a state of unrest. Awaiting further surgery and battling monthly flares courtesy of my Endometriosis, has left me feeling weak and lost. Unable to fulfil my role in my new job, I am unsure of where that leaves me professionally. I could get a part-time job, get stronger, strive for more responsibility and more hours but then I crash down again once my illness dictates I’ve done enough or too much.

I never thought I would have to plan out every aspect of my life, constantly asking myself; “What if I get sick? What if I need more surgery?”  I have never felt more reliable in my life. Lately, it feels like this illness is who I am now, it’s my life and I have forgotten what I enjoy, what my goals were, and who I am. It’s almost as if I need to learn who I am, reconnect with what I want from life. It saddens me that I have forgotten what I was like before my symptoms first started. Was I fun? Full of energy? Outgoing?

I look out from my office window, watching the clouds float by, blurred in the winter breeze, the sun shines to hide the cold. The clouds move so slowly and I feel dizzy as I watch, it’s almost as if I can feel the minutes tick by, me frantically trying to catch up to life.

As I sit in my pyjamas, on a Friday morning, writing this entry, it is difficult to look beyond the 8th of December, the date of my next surgery. A surgery that will remove my faulty ovary and in its place, a gaping hole. What do I fill that hole with? How can I mend myself from the inside out?

I don’t know the answers to these questions yet, I may never know, but I will stumble along as we all do in life, trying to do the best that I can, with people that I love, with patience and understanding. 

 self

 

I regret that I cannot publish more light-hearted posts at this time, but my thoughts are hectic and do not always make sense, but I use this blog much like a journal, and hopefully my sisters with illness can relate and will take comfort in knowing we are not alone. Please reach out to me, if you are struggling today.

Tell me it’s just a bad dream…

anxiety-burn

“No rational thinking can erase the thought or feeling.” – Beethy (the artist)

 

As the panic set in, I laid in bed, my mind running 200 miles per hour and I tried to understand what was happening to me. Am I having a heart attack? I was laid in bed, my husband sleeping next to me, and I was overwhelmed by silent sobs, suffocating, gulping breath so deep my lungs started to burn. I can’t breathe. My hands began to shake as I tried to sit up, hot tears stung my eyes as I desperately tried to regain control. I’m drowning- right here, in my own bed. I could feel a cold sweat develop all over my skin, the cold morning causing goose-bumps on my arms & legs.

This went on for what seemed like hours, but was in fact only six minutes. Not knowing what had triggered this attack worried me more than how it had physically hurt me. What was the matter with me? I don’t have panic attacks. Brushing myself off, I mentally chastised myself & put the kettle on.

A couple of days later, when I was feeling mentally strong enough to analyse what had occurred in the early hours of that morning:

I had been woken from deep sleep by a sharp, stabbing pain in my right side, just under my bottom rib at the front. This pain had triggered such a fear that my mind and body had struggled to deal with it rationally.

My mind had raced from identifying the pain, giving it a name and then rushed to icy thoughts of the future and the “when will it end?” It won’t. The fact that I now know I have active endometriosis on my diaphragm has somehow altered my perception of how my illness will impact my life in the future. In my stricken state, I irrationally, put 2+2 together and came out with 5 (I’m shit at maths at the best of times!)

If I had endo on my diaphragm and my Dr was too scared to remove it, it was too close to my lung, it’s travelled from my pelvis, reproductive system and bowel, up to my diaphragm. It can’t be too long before I’ll have endo in my lungs! Coughing up blood every time I get my period!

A horrific image accompanied this last thought. It was me, fast-forward by 6 months, or a year. I’m crying soundlessly, sitting on the edge of my bathtub, my hand to my mouth. Gently rocking back & forth. Pulling my hand away, there is blood. My mouth forms the ‘O’ of a sob, but I remain silent. Stark red contrast against my pasty palm and crimson staining my teeth.

This image seems to be scorched onto the insides of my eyelids because I see it every time I close my eyes. When I remember the fear and panic and this projection; my focus blurs, my vision distorts and I’m suddenly sucking in air with desperation.

Panic? Anxiety?

I don’t even know what to call it.

But it’s safe to say, I haven’t slept properly since this first happened. Which is why I’m posting this at midnight.

LOL S1 Ep2

I apologise in advance if this is too honest/too gross/too cringey for your delicate eyes.

This is the 2nd episode in my LOL stories – I hope it lightens your day.

Read, laugh and try not to judge me too much.

I am 3 days post-op. I am on my period and grumpy. I have the stomach of a heavily pregnant lady; only it’s not a baby, it’s just swelling. I’m feeling grotty and I’m in pain.

 

On this morning, my husband is up for work. It’s 6am and he’s passed me my hot water bottle and pulled the covers back over me. He’s downstairs somewhere, sleepy and drinking tea.

And suddenly, I’m awake. I’m running to the bathroom with awful stomach cramps. I sit on the toilet and grimace as I get rid of everything (including my spleen and a lung). I’m hurting and a little bit overwhelmed. I’m sitting with my head in my hands, feeling awful and cursed.

As if I need this right now?!

And that’s how I’m sat as I hear my husband climb the stairs and walk down the hallway. He knocks and with concern in his voice, he says: “Are you okay, bab-?”

Only I cut him off and scream at the closed door “DON’T COME IN HERE!!! DON’T COME IN!”

Jesus, I can’t let him in here. After all the other shit he’s had to deal with and all the talk about periods and babies he’s had to listen to and all my crazy mood swings he’s had to accept whilst trying this contraceptive or that hormone injection. I just couldn’t let him in.

Like the loving husband that he is, he opened the door just a crack; just wide enough to see me sat on the loo with my jama’s around my ankles, head in my hands, taking deep breaths as I fought to hold back sobs. He quietly closed the door and waited until I was done before going to work- tucking me back into bad and kissing my forehead before he left.

Don’t worry- this “aww!” moment was not lost on me. No matter how much pain I’m in or how much crap (in this case, literally) I have to deal with, I am still so grateful to have him. I appreciate him and how much he looks after me when I’m poorly.

 

Anyway…

So I had a horrendous toilet experience, luckily I wasn’t having to travel to the hospital and had the luxury of locking myself away in my own bathroom.

And before you ask- no this is not the end of the story. If you can believe it- it gets worse.

After hiding in bed for a few more hours, I pull myself together and head for a shower. Everything pretty normal so far. Only- I felt something, not quite right, down there. I thought: Well I’ve got Endo on my bowel, it’s probably pretty pissed off after being traumatised this morning. And shrugged it off.

I felt lots better after a shower. I got dressed (at this point, by ‘dressed’ I mean put on clean loungewear/jammies) and decided to make a brew. And still I knew something wasn’t right. Something was new, different. Whilst the kettle boiled I headed to the bathroom to investigate.

I had what seemed like a growth/lump/parasite on my bum. Well this is new.

There was a small voice in the back of mind telling me I knew exactly what it was. I slapped it around the face to shut it up. Can I get a break- PLEASE?!  No, I can’t have haemorrhoids; not on top of everything else I have to deal with right now. My body hates me.

 But how could I be sure? My curiosity got the better of me.

Continue reading →

Thank you Anna Smith

For women with Endometriosis, living life as normally as possible is a struggle. With chronic pain so severe and heavy irregular periods, it is easy for life to get us down.

After I’ve had a sucky time and I am over the initial trauma of an appointment, diagnosis, surgery- I try to find something about it to laugh at. I know I shouldn’t, illness is serious but I regularly use this as a coping mechanism and make light of my illness.

Humour can be as uplifting as opioids if you use it properly.

And so, this is the first of many LOL moments, coming up on my blog. Be assured- I will spare no details, no matter how embarrassing, and hope to hell you don’t judge me. Enjoy

 

Last week, on a grey morning, I woke up with a sad feeling. I was grumpy and just couldn’t brush it off. There’s no point in dressing this up as something else. I was mardy and tired and feeling sorry for myself. So I tried my cure-all, feel better Go-To’s:

  • I had a cup of tea and dunker biscuits in bed- No
  • I watched the original Ghostbusters film (Bill Murray is a sure way to make me smile)- Nope
  • I had a scolding hot bath with a Lush bath bomb, I soaked until I was pruney & short of breath from the steam- Nothing

With a determination I’d not seen in weeks, I got out of the bath and dressed quickly. Trying to put socks on and hold my phone to my ear is not easy and, being clumsy like I am, I stumbled more than once as I waited for my mum to answer her phone.

“Mum, it’s me – Yeah, no, I’m fine – I need you to come get me – Soon, like 10 minutes? – We’re going to town, to King’s – I need to buy a bag.”

As you can see, this needed action. This mood had to do one. And in order for that to happen, I needed a handbag. Needless to say, my mum (being the treasure that she is) dropped everything.

Me and mum went to a local boutique-with-café in my town and I immediately headed for the bag section. Usually, it is chocka with homeware and ornaments- things that I’d break just looking at them. But at this time, the owners were making way for their Christmas stock. That in itself is exciting! It’s like a frigging grotto in their every Christmas, soon be time to put my tree up! This lightened my mood considerably and I’d not set my sights on a single bag yet.

I found one. She’s an Anna Smith tote. I carried her around the shop like a small baby while I browsed. I held her in my lap as I waited for coffee. I paid £42 for her and that is money-well-spent as far as I’m concerned!
There is nothing more satisfying for a bag-lover, than transferring your things out of your old bag and into a new one. Filling all the pockets with my stuff, forgetting that in a month everything will be dumped in and I’ll have to wade through a pile of old receipts and wrappers and leaflets.

Girls, I needed this bag. Not only to make me feel better, but since I now have to take a ton of stuff with me everywhere I go- I need a bigger, hardier bag. Obviously I have all the usual suspects: purse, keys, glasses, pen, notebook, diary, gum, perfume/deodorant. But now that I have the reproductive system with a mind of its own I also have to carry: about 3000 pads, a heat pad, spare knickers, and a small pouch of pain meds (which I’m sure would get me arrested if I was searched by police!)

I can fit all of my baggage into this tote bag. Just call me Mary Poppins.

It can be hard being a girl. But it’s a nightmare being a girl with Endometriosis.

So we deserve handbags. Thank you Anna Smith.

 

Post-op Realness (graphic!)

On 20th September, I had my second laparoscopy.

Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.

I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.

 

Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”

Continue reading →

Do I use Coconut oil? Yes!

coconut-oil

For the past year or so, there’s been a lot of fussing over coconut oil and how amazeballs it is for your skin, health, food- how you can use it for everything! For the longest time, I tried to resist the urge to buy a jar and jump on the bandwagon but I found some with a great price point, tried it, loved it, so… I’m now a Coconut Oil Convert!

What do I use Coconut Oil for?

  • Use in cooking/baking as an alternative, healthier oil
  • Hair mask
  • Frizz fighter – I use a small amount after styling my hair to calm fly-aways and seal split ends.
  • ‘Herbal’ Rub *cough/wink* penetrates the skin to treat muscle aches, abdo pain. *Inspired by Whoopi & Maya products from the US*
  • As bath oil. Add some to a hot bath, it’s a natural skin moisturiser.
  • Lip balm
  • Make up remove

 

 Have you tried organic coconut oil?

How did you use the oil?

What did you think?

 

FAQs September 2016

 Why do I get pain during ovulation?

No-one is sure but one theory is that the pain is the egg breaking through the ovary wall, which releases a small amount of fluid or sometimes a small amount of blood that irritates nearby nerves.

What are the stages of Endometriosis?

Stages of Endometriosis describe how severe the Endometriosis is.

xstages-of-endometriosis

Click the diagram above for more info

From left: Stage I, Stage II, Stage III & Stage IV

I have Stage IV Endometriosis.

What is a chocolate cyst?

aka Endometrioma.

Chocolate cysts are a particular type of ovarian cyst linked to endometriosis – these are cysts in the ovaries formed by endometrial tissue (tissue similar to the lining of the uterus). forms dark fluid-filled cavities that can vary in size. The diagnosis of an endometrioma may be suspected based on ultrasound imaging of the pelvis, but the final diagnosis must be based on microscopic examination of the cyst itself.

choc-cyst

Click the diagram for more info

 Where can I contact other women with Endometriosis?

There is an online forum where you can reach out to other women with Endometriosis HERE

What pain meds do I take?

  • Tramadol (standard & prolonged release)
  • Co-Codamol 30/500mg
  • Cyclizine
  • Diclofenac
  • Oramorph

*These are the meds I have, to be taken PRN

NHS or Private medical care?

I have been under a NHS specialist when I had my 1st laparoscopy, and had a ton of hospital admissions.

My new specialist works at a private hospital but does see NHS patients, this is funded by the NHS. During my experience at this private hospital, I have felt supported, listened to, assured that my Dr has my best interests in mind. My husband has also had a surgery done privately and we were both so impressed by the standard of care he received. I appreciate the NHS but if you have the money, or have thought about getting a ‘pay-monthly’ healthcare plan – I’d say it’s definitely worth it.

What is the worst thing about my Endometriosis?

The pain is difficult to manage and I get anxiety when I know my period is due. I worry about being off sick. I worry about disappointing my family and friends by having to cancel plans or for being MIA for weeks.

I don’t care about getting surgical scars on my abdo. I don’t worry about weight gain or weight loss due to hormone treatment.

The worst thing about Endometriosis is that I have to be less than I am. I have to rely on my husband, who takes such good care of me & he’s my rock but he didn’t sign up for this when we first met.

Pain changes a person: I get scared that I’ll change for the worst & my husband will fall out of love with me.

I hate Endometriosis because it literally affects every part of my life.

A small rant about big worries

1 in 10 women have Endometriosis. Around 1.5 million women in the UK are living with Endometriosis. Endometriosis is a chronic condition.

‘Chronic’ is defined as persisting for a long time or constantly recurring. There is no cure for Endometriosis and very limited treatment options:

Hormone treatments such as contraceptive medication (Combined pill, Depo Provera injection, Mirena coil, IUD implant)

Hormone Treatments such as Zoladex, starves the body of oestrogen which places the body in a temporary menopausal state. A lack of oestrogen causes periods to cease altogether. Once the injections are stopped, the ovaries will switch back on and periods return to normal.

These hormone treatments are not appropriate for a woman who is trying to conceive. While she’s trying for a baby, the Endometriosis will run unchecked, causing whatever damage. It could be months before she conceives, meaning months of discomfort/pain.

Another treatment option for women with Endometriosis is pain management. By using a hot water bottle, heating pad or hot bath, pain can be reduced. Mild pain can be treated with paracetamol or ibuprofen. TENS Transcutaneous Electrical Nerve Stimulator machine The electrical pulses are thought to work by either blocking the pain messages as they travel through the nerves or by helping the body produce endorphins which are natural pain-fighters. Some women have stated that Acupuncture has helped relieve their symptoms during a flare up.

Women may be offered the opportunity to have a Laparoscopy, which is a less invasive procedure usually used by doctors to diagnose Endometriosis and also, to treat adhesions and endometrial tissue outside the womb. This procedure provides some relief of symptoms but can recur in time and so some women have to have several of these throughout their lives.

Hysterectomy refers to the removal of a woman’s womb. Oopherectomy is the removal of both ovaries. Both are defined as radical surgeries and are irreversible. If a woman decides on a hysterectomy but opts to keep her ovaries the chance of Endometriosis returning is increased.

These radical surgeries are rarely offered to younger women or women without children. This is because the woman is expected to exhaust every option if wanting a child.

“No gynaecologist will agree to giving your a hysterectomy because you are 25 years old and don’t have any children. There are other things we can try and a hysterectomy is a final option.”

So I can’t get pregnant because I’m in pain all the time, and have Endometriosis. You tell me to consider IVF. Due to pain, I work part-time. I don’t qualify for NHS funding for IVF because my husband has children from a previous marriage. No children, no hysterectomy. So I’m stuck with the pain until I can either afford IVF and conceive or reach an age that is acceptable for me to have a full hysterectomy?

How is this acceptable?

Endometriosis and symptoms in each woman is very different, the efficiency of treatments cannot be measured. There can be no generalised treatment for women with Endometriosis.

Believe it or not- I have had a gynaecologist tell that if I get pregnant it will ‘sort out’ my Endometriosis and pain.

Is it right to pressure a woman into having a baby sooner? Shouldn’t other options be explored?

 When a woman has tried all the pain management options, and the specialist suggests surgery, she will take it, because she trusts the doctor will make the right call.

Is surgery scary? Yes.

Do I have the luxury of being scared? No. I need this surgery because I can’t manage my pain anymore.

Given the ultimatum: Either agree to this treatment (which isn’t guaranteed to work) or suffer with the pain.

Are we compromising our health because there are only limited treatment options?

Endometrial tissue/scarring cannot be seen on an x-ray, ultrasound scan or blood test. Misdiagnosis is often common in a woman’s journey for answers, as symptoms are similar to other health problems. Doctors may end up treating a woman for the wrong illness, e.g. Irritable Bowel Syndrome. There is no way of identifying Endometriosis without laparoscopy. So without this surgery, without the correct diagnosis, a woman could experience years of suffering with pain, heavy periods, fatigue etc.

Although, doctors bear in mind that if the mother has endometriosis, it is likely for the daughter to have it also- it can be hereditary.

10 things you’ll know if you live with Endometriosis

  1. It’s OK to send your spouse on an emergency trip to the chemist, at 11pm.
  2. No, it’s not an alien. It’s just a clot.
  3. It’s OK to eat comfort food and chocolatey treats & not care about weight gain.
  4. You can’t explain your clingy, needy, hormonal outbursts- it’s just another Endo Symptom! 
  5. You will change your outlook on life: “Life’s too short…”
  6. You will get into the habit of picking up Paracetamol & Ibuprofen in every grocery shop.
  7. You will get to know your cycle & body really well, you’ll probs have an app that sings a song when you’re ovulating!
  8. You’ll become the go-to wizard when your female friends have a ‘lady garden’ problem.
  9. Get comfortable talking about ‘awkward’ subjects like: periods, sex, cervical fluid.
  10. Smears/internal examinations don’t get any easier! Despite 100 Drs having a butcher’s at your VJ.

 

*Bonus 11.

It will become obvious that people don’t understand what CHRONIC’ means.

“get well soon” or “oh, you still have that?” or “you don’t look sick”

These comments don’t apply to a chronic condition. I will always have Endometriosis. There is no magic pill. Endometriosis is life altering.

 

BUT WATCH ME KICK-ASS ANYWAY

Side effects of my Chronic illness

  • Spontaneity goes out of the window.
  • There are 84 days out of the year in which I am guaranteed severe pain.
  • Being unable to work full time hours due to chronic fatigue. Having to work part time has a negative impact on my finances. I have had to leave jobs because of my illness, either because I’ve had a lot of time off or that I am physically unable to do the job.
  • I have learnt to accept change.
  • It takes a lot to accept the restrictions caused by my chronic illness.
  • I have received several labels since my Endometriosis became a serious problem- lazy, drug-seeker, attention-seeker, depressive, unreliable. Having to deal with peoples’ prejudices.
  • I know my body.
  • I can’t eat certain foods – it’s great trying to figure out which ones are OK.
  • I get anxiety waiting for my period to start.
  • I am dependent on my husband a lot of the time.
  • I act like a drunk fool when I have to take strong pain relief.
  • Being pushed into contraceptive / hormonal / surgical treatments or deal with the pain.
  • Being pressured to have a baby sooner due to the threat of infertility.
  • Losing friends: There are limits to a person’s willingness to understand.
  • Acknowledging the link between depression & chronic pain.
  • Strain on relationships: spouse, family, friends.
  • Guilt & disappointment.
  • I’ve gotten really good at hiding how I feel, pushing it to the back & concealing my pain.
  • I know my Drs, nurses, A&E staff really well- continuity of care 100%
  • There are times when I hate my body.

fku