Too beautiful not to share

I need someone

who knows struggle

as well as I do

someone

willing to hold my feet in their lap

on days it is too difficult to stand

the type of person who gives

exactly what I need

before I even know I need it

the type of lover who hears me

even when I do not speak

is the type of understanding

I demand

 

-the type of lover I need

By Rupi Kaur, milk & honey

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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.

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

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

 

 

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

 

Goodbye Zoladex

In March this year, after 6 months of zoladex injections, I decided to stop the treatment.

It was finally baby time. I bought packs and packs of pre-conception vitamins, I upped my daily water intake, I got the Ovia fertility app for my iPhone.

The first bleed didn’t come for about a month after I expected it. My menopausal symptoms; hot sweats, mood swings, seemed to fade away until I suddenly noticed they’d gone.

That first bleed though- eugh! it was horrid. I had fully prepared for it, mentally, physically and practically. I’d booked the week off, I’d stocked up on monthly essentials, painkillers, heat pads and comfort food. The cramping pains were as severe as before the zoladex but the bleeding seemed to have gotten a little better, not as heavy at least!

I bounced back much quicker than I’d expected to though. The day after I stopped bleeding, I felt relatively normal, if not a little bewildered. Had I done the right thing stopping the injections? How long would it take to get pregnant? 

The second month, I had my blood taken and tested for hormone levels. It looked like my ovaries were back to normal, I had ovulated. Ovulated? As in, there could be a baby? What?! 

I was like a crazy person, counting the days, knicker checking and when my period never came I was beside myself-excited. My GP said if I hadn’t come on, to take a test.

Now girls, I have never had to take a test before as I’ve always been super careful and obviously never planned a pregnancy, so I’ll admit I was a little anxious about it. I stood in the middle of Boots holding the Clear Blue Pregnancy test and the Boots one, a confused frown crinkling my forehead. Which one is more likely to give me a positive result? Now, I know this is ridiculous, but at this point I’m beyond reason. It gets worse…

I had to read the instructions! Hilarious! How hard is peeing on a stick?! But you want everything to go right,  and as I waited 3 minutes for the little lines to show up, my anxiety tripled.

My husband had to read it and tell me. Negative.

Yet no period? Odd. I rang the GP and he said to wait 48 hours and then try again. I’m not a patient person but that was the longest 48 hours ever. But I did it, not without a grumble of course. Still negative.

2 hours after my test, I started bleeding. My body hates me and is taunting me. But, I shook it off and put on my positive pants.

After this fiasco, I decided to get rid of the Ovulation app on my phone, I decided to stop reading all the fertility tips online, I decided to stop calendar-watching. If this is going to happen, it’s going to happen faster when I’m not stressing and obsessing about it.

I’m 4 months without the zoladex treatment. The periods aren’t nice, but I’m ready for them and I’ve learned to pick myself up afterwards. I’m strong enough to manage this- I have to be if I want to have a baby. Trying to conceive is difficult but going through this with Endometriosis forever in the back of my mind is so disheartening. It’s like: the despair of not being pregnant isn’t hard enough, here’s some physical agony to go with it.

The truth is; there are no more treatment options for me, the Zoladex proved that. The end game is a Hysterectomy. I know this and have accepted it.

The fact is- I need to have a baby. And when we eventually do, our baby will be the most longed for and the most loved in all the world. (Yes, I know every parent says this…) 

My thoughts are with those couples trying to conceive, you get a hi-5 ‘cos I know how much the waiting game sucks.

Much love

A xo