Recent Hurdle

(Note: This could be distressing, caution advised)

That morning started like any other morning.

Up at 7am, dressed and out the door by 8:15am. I felt good. So good, I had heels on.

As I made the commute to work, I sang my heart out. Singing along to my Disney playlist, I was happy.

About 10 minutes away from the office, I felt a strange twinge in my side. With my insides being as angry as they are, god knows this wasn’t anything new. However, the severity of the pain and the rapid onset was. How I made it to the office, I’ll never know, I can’t remember the rest of the drive. Something was very wrong.

I abandoned my car just outside the building, fearing I wouldn’t be able to walk the distance from the car park. I could barely walk. It took all my strength to stay standing. The pain was so intense I had to hunch over, taking slow steps, like an old lady.

I could hardly breathe.

I stumbled into the building, the first to arrive, I clutched the walls as I staggered to the bathroom. How is it possible to feel like I was going to be sick, pass out and scream all at once? What was happening?

This agonising pain increased from 1-10 in just twenty minutes. I didn’t have time to reach for my rescue meds, to apply a heat pad, to do anything. I was alone & scared. Shaking, I dialled my husband’s number. Knowing he would be busy at work, I held my breath, squeezing my eyes shut against the pain.

Between sobs, I cried for the receptionist to pass the phone to my husband.

In all the time I have been struggling with Endometriosis and pain flares, this was the only time where I’ve made a conscious decision to call an ambulance.

Nick reassured me, told me to call 999. I did.

As I was on the phone to the emergency services, my manager walked in. She took one look at me and took over. She will never know how grateful I am that she was there, with me, that day. I laid my head on the desk, crumpled in pain, trying to breathe, trying to stay conscious.

I felt like I was dying. The pain was so bad. Something was very, very wrong.

Three calls later, we were told help was on the way. It felt like it would never come. Just when I thought I couldn’t hold on, Jade said, “Oh! They’re here now.”

The sigh of relief I released was immense. In that second, I thanked everything that they made it.

Like angels, the paramedics swooped in and immediately took over. They took one look at me and hooked me up to Gas & Air. I then had lots of stickies on, that told them how my heart was doing. It felt like it was aching.

‘Why is this happening? Again?’

I had to shuffle to the ambulance, a paramedic by my sides, sucking on the gas.

It was all hazy as I drifted in and out of pain. I remember Jade wishing me well, giving me my bag and then we were on the way to the hospital.

I laid on the gurney, unable to straighten my legs out. It was like my body instinctively knew to curl into itself, to guard against pain.

I winced against the jerky movements of the ambulance as it stopped and reversed at the hospital. And again I was awash with relief as the ambulance driver opened the doors and I heard, “Is this your husband?”

I lifted my head and our eyes locked. And I cried. I knew that I could collapse because I knew I could lean on Nick, that he would watch out for me and pick me up again.

I was wheeled into A&E and I braced myself for the onslaught of questions…

“What’s your name? Date of birth? What’s happened Aimee? How is your pain now?”

It was the same routine, just a new hospital and new faces. These doctors didn’t know me.

I think every woman with Endometriosis struggles with new doctors, reliving all the traumas, the medical history and desperately trying to make the professionals see how bad the pain is, what it’s like and that it’s not all in your head.

The notion that I might not be taken seriously and discharged is always a very real fear, in any hospital visit.

Luckily, something was shining down on me. I was blessed with a very understanding doctor who could read the pain written all over my face. She overruled other doctors and some less-empathising members of the nursing staff, she held my hand as I cried and rolled around the bed in pain.

She heard my “Please. Please help me.” and answered…

with morphine.

There’s always a question that I dread, not because the doctors have to ask it, but because I have to answer. “Aimee, could you be pregnant?”

Something squeezes around my heart each time, I answer in the negative.

Despite my constant rambling about previous surgeries and cysts and MRI results and ovulation pain stories and pain killer lists, there still seemed to be a lot of confusion about what was actually happening to me.

Some theories were:

  • Ectopic pregnancy
  • Appendicitis
  • Pelvic Inflammatory Disease
  • Some sort of infection

All theories that I’ve heard before, bouncing around my head. Theories that have all been proven wrong. This was my Endometriosis.

The doctors, thorough as they were, insisted on an Ultrasound scan and an X-Ray.

By this point, I had been given paracetamol, a diclofenac suppository and a whole lotta morphine, along with the two tramadol I had taken myself whilst still at work. I know I sound like a drug addict. But that’s just how bad the pain was. I can’t even describe it now, like I’ve blocked it out.

I could barely stand still for the chest X-Ray. I held onto the machine, my legs shaking, biting my lip to keep from crying out. It was all too familiar, all too much. I lowered myself back onto the gurney. The Radiologist hurrying to make a call to the Ultrasound department. She managed to squeeze me in, luckily. That meant that I wouldn’t have to wait for 7 hours for a scan.

I was taken back to A&E before being taken to the ward. I would be admitted. I was shown to a bed, and waited as my husband went to the car to collect my overnight bag (as practised as we are at this, he knew I would need it).

While I drifted in and out of restless sleep, the drugs starting to overpower my senses, the doctor came. I struggled through an internal exam, I gritted my teeth against the dismissal of my accounts. The gynaecologist told me everything would be fine, told me it wasn’t a problem with my cysts, or my Endometriosis. I couldn’t understand what else it could be. Dazed, I returned to my bed, texted my husband, who quickly returned and wanted to speak with the doctor.

She retracted her original comments, telling Nick she suspected the Endometriosis was the culprit, along with an internal infection. I was filled with antibiotics; a large dose via IV and 2 lots of oral antibiotics. What had caused the infection? 

I will never know.

I was discharged the next day, after being told I should have plenty of medication and pain relief at home and should therefore be able to manage the pain. I was ensured that things should start to improve now I was on the antibiotics.

I doubt that there was ever any infection.

When I had failed to ovulate after stopping the zoladex injections, my doctor prescribed me Clomid. This drug works by stimulating the ovaries, to encourage ovulation. I believe that the Clomid irritated my ovary (and in turn, the attached cyst), increased its size, which then aggravated my Endometriosis and caused the flare up. The fluid in my pelvis, could have been just another consequence of this.

And following a tense few weeks, waiting for a hospital appointment, my Gynaecology specialist confirmed this… Right before he offered me a ‘final’ solution.

I think that’s enough offloading for now, don’t you? Just know that I am incredibly appreciative of all the support and light I have received, and I will be alright in the end – after all this will only be a small part of my journey.

xo

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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.

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

A letter to my younger Self

 

Dear 13 year old me,

You’re one of the quiet ones, you prefer books to real life people. You spend a lot of time in your room. This isn’t a bad thing. You still have the friends you grew up with, to them you’re Nerdy Spice. They all shave their legs, have done for a while. They all have boyfriends and stay up till after midnight. Mum won’t even let you near the tweezers and you have an 8 o’clock bedtime.

You’re embarrassed that you have a bed time. When your friends call and Dad tells them you’re in bed, you have to explain it away with a stomach bug the next morning, on the walk to school. But those 8 hours of sleep are a god-send. It gives your body the time to re-boot, time for your hormones to untangle.

Although, now at 25 years old, I crave early nights and those blessed 8 hours are essential. Without them I’m a cranky pants.

Remember when you used to call your friends during that 13th summer, let’s go swimming! No. Why? Because all of your friends had ‘that time of the month’. You were so upset because you didn’t have boobs, or hairy armpits, or a period.

In desperation, you cried to mum, “I’m never going to get my period, I’m going to be the last girl ever to get them!” You felt so left out and mum calmed you down, and said in a quiet voice, “When your periods start, you’ll wish you never got them.”

Listen to mum. She’s like Gandhi. Do not scoff at her rules, jokes, or words of wisdom. Mum knows what she’s talking about & she’s right.

You will hate your periods, boobs get in the way and shaving becomes a full time job but without a pay day.

You will put a lot of pressure on yourself on your journey through secondary school. You will never meet your expectations, but you have to realise that you have already made Mum and Dad so proud. They are proud that your Parents’ Evenings go well, your grades are good and they are grateful they don’t have to worry about you causing trouble on the streets at night. They can trust you to make good choices and to do your best in everything.

Be thankful that Mum and Dad are strict parents and that they love you enough to use rules to mould you into a better person. In another 10 years when you’re living on your own in Northampton, you’ll be glad that Dad taught you about Online Banking and made sure you are street-wise. You’ll be grateful that you spent time babysitting your little brother and sister because it taught you responsibility. Be grateful that Dad taught you about money and that you have to work hard and save for things that you want. Thank Mum for teaching you compassion, for being a shining example of a good-heart.

Over the next few years, you will meet amazing people. Some you will keep with you forever and some you will lose as they go their own way. Life takes everyone in different directions. Learn everything you can from these people, how they influence you and the impact they have on your life. You can learn so much from people.

You will push yourself and set expectation that you are never able to achieve. Learn to love who you are. There are some tough times coming up and you need to be strong.

You will meet bullies, exams, heartbreak, fall-outs with friends and fall-outs with parents. You will move 90miles away from everything you know & everyone you love. Be outgoing, meet people, try new things.

Don’t try to micro-manage everything. It’s OK not to have a plan. Don’t rush into adulthood and force yourself into a life you’re not ready for. Everything doesn’t have to happen right now. Be patient

(No, I haven’t cracked Patience yet, but I’m trying)

Alas, you will have to kiss a few toads before you marry your prince. Open your heart to love. When you find it, it’ll take your breath away. This love will not be an easy one, and you will face some tough situations, but he’s so worth it. He’s exactly right for you, the man you pictured when you read all mum’s Danielle Steel novels. You have found your best friend. He is the other half of your soul and he loves you irrevocably and completely.

When you take a tumble, be it due to illness or lack of judgement, remember that anything worth having is never easy. Have the conviction to stand back up.

You will experience hurt and pain and defeat and there is no avoiding this, but know that you are a strong. No matter how alone you may feel in those dark days, know that people love you. They will shoulder this hurt with you and it is OK to let them for it is too heavy for you to carry alone. Acknowledge this early, before it breaks you.

Do not let sadness bind your personality and drain you but hold fast to who you are. Do not let pain change you, try and stay soft. Stand strong against the regret and bitterness that will taint your caring nature. Keep striving to be a good person.

Your sensitivity is a gift and it allows you to connect with people on an emotional level. You have empathy and understanding, which people will lean on. Do not be afraid to cry, crying is not a sign of weakness. It shows that you care enough about something and you’re willing to break trying to get it.

Be confident enough to laugh at yourself. It’s OK to be weird.

Never apologise for being who you are. Stay cool.

From your 25 year old Self   xo

baby.jpg

 

 

What do I pack for Surgery?

So you’re booked in for surgery, do you need to take anything?

Normally, a straight-forward laparoscopy would be done as a day-case.

However, there is always a chance you may have to stay overnight. Be like a boy scout, be prepared. Just-in-case. You won’t want to be without your comforts if an extended stay should happen.

 

New items I’ll buy closer to the operation date:

  • Buy new pyjamas – a really comfy, bright coloured, awesome pyjama set. Make sure it’s loosing fitting and the bottoms have a soft elastic waist.
  • New pyjamas need new slippers – try and get a pair with a firm rubber sole with grips as you’ll be expected to wear slippers down to the operating theatre/prep room.

 

**On the day – wear comfortable clothes. Plan what clothes you’ll be travelling home in, trousers needs to be loose fitting, soft waistband.**

 

You’ll need:

  • Any paperwork from the hospital that is relevant to the surgery
  • Any regular medications
  • PJs, slippers & dressing gown.
  • A few pairs of Pants – I don’t mean the mini lace pair or the Ann Summers special – I mean 100% cotton briefs from Marks & Sparks. Full coverage, comfy, not tight.
  • Socks
  • Clean t-shirt – loose fitting
  • Soft crop top / wireless bra
  • Baby wipes/Face wipes – all make-up has to be taken off for the operation.
  • Shower gel, toothbrush/toothpaste, deodorant, brush – the usual stuff
  • A few Tampax/pads – just in case.
  • Heat pad
  • Headphones, phone charger, book/kindle/magazine
  • Bottle of water/drink – for after the surgery

 

Also, be aware – you will not be allowed to have jewellery on during the surgery. If you prefer to keep your wedding ring on, the nurse might have to put a plaster/surgical tape around it.

 

 

 

 

Endo Gone, You’re Strong! playlist

So the operation went without a hitch. You’ve been mooching around the house in a bed, sofa, bath, bed loop for 2 weeks now. You’ve eaten all the treats, slept for 4000hours straight & finished all the movies on Netflix.

The time for moping & feeling sorry for yourself is over. You might not be ready to greet the world or return to work just yet, but nothing is stopping you giving yourself a shake.

I have put together a Spotify Playlist that makes me feel brighter and motivates me and triggers more positive thinking. It makes me want to be happier, to get up & make things, do things.  So use take your pain & broken body and turn it into something awesome.

Give the playlist a listen & let me know what you think.

Listen here: Endo Gone, You’re Strong. What’s the worst that could happen?

The worst thing?

Your neighbour could catch you dancing freaky to George Michael in a top-knot and a nightie. The nightie has tea stains down the front & your legs have about 2 months worth of growth. Oh! And you also have marmalade on your cheek. SO-WHAT!

Smile, be freaky and OWN IT 🤘🏻

 

A xo

 

 

How do I prepare for surgery?

So I’m booked in for some surgery later on this month. This will be my second laparoscopy in 2 years.

The first I had done at Kings Mill hospital, my gynae found severe endometriosis when he did the surgery, he had to free up my ovaries as they had adhered to my pelvis, and free the lesions in the abdomen cavity. I had 4 little cuts, like plots on a map, all with dissolvable stitches in. I remember coming round from the general anaesthetic, and the first thing I felt was pain, like someone was holding my ovaries in their fist. I was given pain relief, post-op advice and my husband was allowed to take me home.

I hurt for about a week, falling in and out of tramadol-induced sleep, not really eating and feeling very sorry for myself. I’d told myself this surgery would cure me. Unfortunately, my Endosisters and I know that this is not the case. There will be no easy fix, no cure.

me-n-harl

A few months later, after trying different contraception treatments and seeing little improvement, I moved to a different GP surgery. I’d been told that this new GP worked at a women’s ward in Sheffield & specialised in gynae problems. Result. The Doc referred me straight to a fertility specialist at BMI Thornbury Hospital, in Sheffield.

Things were looking  up. I had received more help in 2 GP appointments than I’d had in 9 m0nths of hospital admissions.

After a  6-month course of zoladex injections; it was time to start trying for a baby. I stopped the injections and a little over a month later, my period was back. And she brought the pain with her.

It took 2 cycles before my pain was beyond self-management. I went to the hospital and had an ultrasound scan, only to find that I had a substantial endometrioma (or cyst) attached to both ovaries. Once again, I headed back to the consultant, who was on the ball and scheduled the surgery.

Now we’re all on the same page…

Before surgery there are a few things I like to do or items I buy that make recovery a little easier. This is how I prepare for surgery:

Do a grocery shop a couple of days before the day of the operation. Make sure to get foods that you know you like (these may not necessarily be healthy). Easy to prepare meals are also a good idea. I always get a few cartons of good soup & some crusty bread. This is a good way to get nutrients in. I always get smiley faces and chicken nuggets or dippers for the freezer- I know I have the diet of a toddler, but I don’t care. Get spreads or sandwich fillers for a quick bite. I get jam and peanut butter. Another of my essentials is sweet potatoes. Roast it in the oven, cut the skin off, fork through & it’s a beaut mash. Get some bottles of water, flavoured or sparkling. Bottles you can keep in the fridge or have next to the bed – keep hydrated. Oh! and you can have treats – you’ve just had invasive surgery.  If you want a whole packet of biscuits with your cuppa’ tea – you can! Buy treats.

Whilst you’re at the supermarket, stock up on essentials like Paracetamol, Ibuprofen, senna & Tampax/pads etc. A lot of the pain meds cause constipation and trust me, that’s the last thing you need when you’ve got holes in your stomach. Make sure you have plenty of provisions, but don’t worry ‘cos if you’ve got a hubs like mine, he’ll be more than happy to do a McDonald’s run.

Try to do all your laundry so it doesn’t pile up too bad when you’re in recovery. Also wash your bedding. Put a fresh set on the bed the morning of or night before your surgery. Nothing beats getting into fresh bedding. SNUG!

Also make sure you get a few books or magazines. I usually have a pile of books that are on my ‘To-Be-Read’ list. Get some bath bombs – you won’t be able to use these until your wounds have completely healed, so when they have you’ll be ready. Get cleansing face wipes/gentle face mask as medications always cause break outs for me. I always make sure I’ve got a few heat pads, just in case, this way you can avoid a scalding with a hot water bottle. Grab a couple of extra pillows too! You’re going to be uncomfortable. Make a nest.

If you’re anything like me, your Dr knows you well and is up to date with your situation. It might be an idea to book an appointment or call in the week before to order any regular prescriptions for pain relief so you have it all ready at home for when you’re discharged. Some times the hospital send you home with only enough for 2 doses. Be realistic with your medication & honest about how bad your pain is.

The week before, spend some time thinking about the surgery, what impact this will have on your body, try and relax. DON’T look up the procedure on the internet. DON’T watch videos of laparoscopy on YouTube. Do things you enjoy, have some ‘me-time’. Maybe visit family or friends, as it could be a week before you’re up for leaving the house. If you’re nervous or have any concerns DON’T bottle it up, talk things through with someone, or call the hospital for reassurance.

The day before surgery, shave everywhere you normally shave. This includes tweezing anything that needs to be tweezed. You could obviously do this the morning of, but my skin tends to be a bit sore/dry after shaving and I don’t want to be any more uncomfortable than I have to be. Also remove all your nail varnish -it’s a big no-no for the op.

Night before, pack a small holdall with essentials. Even if the hospital says it’s a day-case surgery and you’re planning on coming home, still take this bag. You don’t want to have to wear a hospital gown if you’re forced to stay overnight. I’ll be writing another post about what I take with me.

Make sure you’re aware what time you have to stop food and drink intake – this should be on a letter from your surgeon. If you’re not sure, call your specialist well in advance to check. This is important! If you eat past a certain time, you’ll not be allowed to have the surgery.

On the day, wear comfortable clothes, and RELAX.

Please look out for my “What do I pack for surgery?” post.

A xo