by ChronicWriter

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.

by ChronicWriter

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.

by ChronicWriter

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

by ChronicWriter

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

by ChronicWriter

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

 

 

by ChronicWriter

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.

 

 

 

 

by ChronicWriter

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

 

 

by ChronicWriter

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

 

 

by ChronicWriter

How was your first day at school kids?

As I stand in a queue waiting to hand my prescription in at the chemist, I can’t help but notice the adults have got an aura of calm around them that they didn’t have last week. The reason for their good mood? No, it’s not a sale on at Next, or a bank holiday weekend. It’s quite obvious that the light in these women’s eyes is simply bewilderment and panic as they are able to hold a 3 minute conversation with a fellow parent without hearing the “Mum! Mum!” chorus and being pulled in the direction of the toy aisle. No they haven’t left their children at home or in the car, the kids have gone back to school. The nation all took a big sigh of relief as we waved the kids off on the bus and put the kettle back on for a much-needed brew after running around crazy, trying to find the last few bits before school starts. Wave, sigh, tea, relax.

But for some parents, the relaxation and free time wasn’t to last. Little did they know that their children were being ridiculed and their appearance criticised severely as they passed through the school gates on their 1st day of school.

It has been all over the news and on social media about a Headmaster sending children home because their attire didn’t conform to school uniform policy. Some of the pupils from Hatsdown Academy in Kent who had the wrong shoes on or skirts which were too short were refused entry to the school and told to go home to return later in the proper attire. I thought it was just this school, but soon I was reading about similar experiences in other high schools, including an academy in my town.

After seeing some of the pictures relating to these news pieces, I can understand why the parents belonging to these children were unhappy. Why they were confused and demanding answers from the Headmaster. These children all looked very smart, presentable and seemed to represent the Academy very well.

In my secondary school, we didn’t have blazers (it was before all the Academies started popping up everywhere!) but we did have a tie and not a clip-on one. So that tie had to be tied to perfection and shirts were tucked in, top buttons fastened. I’m pro-uniform and would’ve loved a blazer (just for the inside pocket which I would rename as my ‘snack pocket’). With that in mind it’s safe to say I’m an advocate for children learning discipline and respect. I love a good uniform for either work or school; I’d hate to have to get up each morning and pick out an outfit, something fashionable and appropriate. In both situations, uniforms are great for uniting the pupils and creating a level playing field for the children, theoretically reducing bullying behaviour.

However, what I don’t agree with, is the manner in which this Headmaster criticised his pupils. The children, especially the new Year 7s, would have been nervous, anxious about attending a new school, meeting new teachers, dealing with a lot of new information. During what is surely a stressful time, the teachers are there for guidance and support, being someone the children can go to for help with their problems.

This move by the Headmaster has just cancelled all of that out. Looking the children up and down, criticising their appearance. Telling them they can’t come in because there is a gold buckle on their shoe, I can’t imagine what these pupils were thinking. I’ve never heard anything like it. Is that gold buckle or that hair cut going to make much of a difference? Are these trivial things really going to damage a child’s concentration? Probably not. However picking faults and highlighting their flaws publicly, could have serious repercussions. Children struggle with bullying when it’s a fellow-student, how do they feel when it’s a teacher pointing his finger?

And what is the outcome of this little spat over uniform? The Headmaster has flexed his muscles and shown his staff, the pupils and their parents that you mean business. Great. The parents all hate you as you’ve humiliated their children and they are a further £20 out of pocket as they’ve had to buy another pair of shoes. The pupils are scared of you, and probably won’t approach you with a future problem, which could have serious consequences. And the other teachers all agree it was blown out of proportion and feel sorry for the pupils, but smile and nod when you ask for their opinion. All in all, not a bad start to the new term.

You could have achieved the same result with better side effects had the Headmaster dealt with this on a smaller scale. Teachers could have checked pupils’ uniforms whilst they are in the classroom, in form time, popped a note in their planner, sent a letter home. Any of these would have been a preferable alternative to being rejected at the school gates.

I think the children will have plenty of time to learn about rejection and conformity, about criticism and responsibility. But not when they’re feeling so vulnerable on their first day in a new environment, surrounded by new people.

People have been very vocal of their opinions on this situation. You will either agree with the headmaster and applaud his stand against wishy-washy uniforms or you will side with the pupils and parents: Surely, if the pupil has on black trousers, shirt, tie, blazer and black shoes, he/she is in uniform. End of.

But hey, what do I know? I don’t even have children. But I have graduated with a degree in psychology and my dissertation was focussed on anxiety within adolescents.

What do you think?

A xo

Psst! Using the links below, you’ll be able to read the articles relating to this post.

Daily Mail

The Independent

The Retford Times

 

by ChronicWriter

My latest tough time

Opening my eyes this morning, I couldn’t understand how I could still feel tired, exhausted even though I’ve spent the majority of the last few days sleeping. It’s a tiredness bone deep and unrelenting. It makes the most simplest of tasks so daunting. Showering, dressing, even eating is hard lately.

I have become somewhat of a pro at masking the pain. It’s much easier to respond to “how are you feeling?” with I’m fine. Living with a chronic condition means I will never get better. I will have better days and awful days but it will never truly disappear. Endometriosis has no cure. I’ve come to terms with what I have, with the restriction my illness puts on my life. But I still have tough times. I’ve had a tough time recently…


My pain has been everyday for the past 2 weeks. I am not bleeding. I have a substantial cyst behind my uterus attached to my ovaries. I have visited my specialist. I am waiting for an operation to have it removed. The surgery is my second in as many years. This surgery will tell my husband and I where we stand with fertility. That in itself is a nerve-wracking notion. My dreams for children could be dashed in a single day. But with my husband holding my hand, I’m ready to face whatever happens. I am waiting for this surgery with anxiety and restlessness. It almost feels like the 20th September will never come.

Before I can reach that hurdle though, I am blindsided by a different fear. Over the past 2 weeks I have struggled to eat, to live- I have had to take medication everyday just to function and to have relief from the pain. Looking at my calendar today, I froze as I counted down the days to my next period. I’m due on tomorrow. If I’m barely holding on now, barely keeping it together, what will the pain be like once I start bleeding? Thinking about it now, my throat feels tight, sore, like when you scream and your voice breaks and becomes hoarse. My hands are shaking as I write this. I could cry at any moment and I’m forced to take deep breaths.

I keep telling myself: I can do this. This is happening to me because I’m strong enough to handle it. I can do this. This becomes a mantra in my mind as I lay in bed, falling in and out of sleep.

I am putting this down on paper- my sisters who are struggling with this, pushing for a diagnosis, at breaking point do not feel alone. I understand your struggle, I know your pain is real and frightening, you are not alone. I am getting this out, because if I keep it any longer I will scream it out loud. It’s alright to be angry. It’s OK not to be OK, it’s OK to be scared, to cry, to feel low. It’s exhausting trying to keep it together all the time.

When Occupational Health called me; to check I’m really ill, they asked how I live my life. They asked about my mood, asked if I’ve ever self harmed or thought of suicide, I shouldn’t feel I have to lie. I shouldn’t feel ashamed to admit that I have had low times in my life, caused by my illness. I know what it sounds like, telling them that I can’t do the basic of tasks when I’m mid-flare. I shouldn’t feel guilty that I rely a lot on my husband. I shouldn’t feel guilty for taking the time to rest. My body is at war with itself- every day.

I refuse to apologise for being unwell. 

A woman with Endometriosis has a difficult life. The constant fear of getting her period. When taking pain relief becomes a necessity. Finding out that it will be harder for her to conceive because of the scar tissue and adhesions, made worse by the surgeries she had to have to remove the endometriosis. The tension in her husband as he watches his wife in agony, in hospital, he feels helpless. The side effects of the hormone treatments she tried to get some relief. A teenage girl who hates her body for being broken. A 24 year old who has been put through menopause chemically. The look of confusion on an employer’s face when she explains she’s not physically able to do her job. Worry and fear when she opens the final demand notices, as Statutory Sick Pay isn’t enough to cover her bills. Having to pay for her prescription with a credit card because there’s no money in the bank. A husband holding his wife in the bathroom as she cries over another negative pregnancy test.

But these women are strong, resilient and compassionate people. Their hardships bless them with the gift to listen and understand. These woman are brave, because when they are broken and have every reason to give in, they will carry on. These women will cry themselves to sleep and get up the next day, ready for the next thing.

Since I have struggled with this illness, I have shocked myself at my ability to keep going, to keep pushing myself, to keep smiling- even when there was no reason to. I have met some truly inspirational women, all over the world, who have shared their story with me and it has made me so grateful to be part of such a sisterhood. These women have taken the time, pushed aside their own suffering, to help others. While I hate my illness and have rough times, I believe I was given this condition because I am strong enough to bear it, and if I can ease others’ suffering, I will do so. Every time.

 

I hope you’re having a ‘good pain day’, thinking of you all. 

A xo