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

 

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Ovo-Pescatarian

I love a Sunday Dinner. My favourite is roast chicken and stuffing. I love a full English breakfast or anything with bacon. And so it is with much resentment that I fill you in on the past week…

I have tried several options of treatment and I have struggled to cope with either side effects or the fact that they just don’t work. And so after reading up on Endometriosis in Dian Shepperson Mills’ book , I’ve research some lifestyle changes that could help reduce flare ups.

In Endometriosis: A Key to Healing And Fertility Through Nutrition, the author describes how food and nutrition can help illness and improve fertility. 

I have also researched the Endo Diet. This diet suggests cutting out foods which trigger or cause inflammation. I struggle enough with inflammation of their internal organs/reproductive system so if there’s anything I can do to improve things- I’m up for it!

What are inflammatory foods?

Meat (especially red and processed meats)

Processed and packaged foods
Sugar
Gluten, white bread, and wheat
Dairy products
Alcohol
Fried foods

It does just say red meats and it does say that organic meat is better, but I’ve decided to cut meat out of my diet completely. If I’m doing this, I’m doing it right!

Now this was hard. My husband is an enthusiastic carnivore and sticks to the view that “a meal’s not a meal without meat“. Well, we haven’t divorced yet. I’ve just substituted the meat products with extra veg/salad or a vegetarian product. Linda McCartney’s vegetarian range is de-lish BTW! 

Anyway…as I was worried about changing my diet so drastically, I’ve opted to eat eggs and fish. I try to get the organic/free-range/line caught variety just as an added conscience boost.

After a week, I’m not starving. I still eat 2-3 meals a day (I’m terrible for missing breakfast!) So far I feel a less lethargic and not as nauseous after every meal. Below are some of the meals I’ve had this week…

 

 

 

This book also states that too much dairy, heat and refined sugar can cause flare ups – but as a confessed Sweet Tooth, I refuse to give up my desserts just yet. Baby steps…

 

A xo

 

In March we wear Yellow

 

March is Endometriosis awareness month. This month endo sufferers all over the world are trying to raise awareness of endometriosis and hopefully help people to recognize the symptoms sooner rather than later.

This month I have made bracelets (shown above) and I am selling as many as I can in order to raise money for Worldwide Endometriosis Research Foundation. I am having a bake sale at work. I am hoping that my contribution will bring them a little bit closer to reducing the average diagnosis time down from 7 years.

On 19th March, women in the UK will travel to London to meet with other women with the condition. They will don their yellow t-shirts, raise  their banners and march through the city, raising the question “What is Endometriosis?” This is good. We want people to ask about it, to be curious, we want young girls to know that agonising period pain is not normal, that it’s ok to ask the doctor about it.

I’m just doing my bit…

in march we wear yellow.

 

A xo

A year on… My Endo Diary

A year ago today, on my birthday, I was diagnosed with Endometriosis, after 11 months of agonising pain, hospital visits and despair.

I naively thought that this diagnosis would bring a ray of light through the fog that was pain medication, absence from work and illness. I thought that with a definitive diagnosis, I would be led, hand in hand, towards a ‘cure’ or efficient treatment. I thought the “We’ll give this a go” attitude towards my healthcare would cease and a lightbulb moment would precede a concrete plan to recovery.

I was wrong.

It has taken a lot of energy, all of myself, to get to where I am today. It has felt like a never-ending path of painkillers, contraceptive treatment and doctor’s appointments.

Since being diagnosed, I have registered with a new GP Practice. I now see a GP Dr regularly who actually specialises in this area of women’s health. I have been referred to a new specialist, one of seems to understand where I’m coming from and empathises with just how debilitating this illness is! I have tried several different methods of pain relief. A short list looks something like this; Tramadol, Diclofenac, Naproxen, Oramorph, Co-codamol.

Thanks to a fellow Endo sufferer who I found on Twitter, I requested a prolonged release Tramadol, which seems to have less side effects which means I can at least try to have a normal day.

After I had my surgery, I was advised to try and prevent the endometriosis from growing back and the best way to do this is hormone treatment in the form of conttraceptives like the pill etc. I started the Depo Provera injection in February 2015 – I went from generally ok to suicidal in 2 weeks. I didn’t have a second injection.

I visited my consultant, the surgeon who did my laparoscopy. He suggested trying the Cerazette pill. (You will notice, there’s not a lot of confidence behind the treatment suggestions at this point.) This progesterone only pill didn’t work. I bled irregularly, for days at a time, heavily. I was in pain everyday. I ended up back in hospital. A doctor in hospital implied I was seeking stronger drugs- I was  not dependent on drugs- I was in pain every single day. I was exhausted, drawn and no longer recognized myself.

I was referred to Pain Management. I had acupuncture a couple of times and a woman spoke to me about mindfulness and breathing techniques. How is breathing supposed to help me? I resented this. I couldn’t focus my thoughts for more than a few minutes, how was I supposed to focus and meditate? I was discharged shortly after starting this course, following 2 missed appointments due to absence. I was ill and couldn’t get out of bed.

I was miserable. I couldn’t live a normal life, my job suffered, my marriage suffered and the doctors were supposed to help me, supposed to know where to go from here.

This is when I changed doctors. I stopped taking the pill. Why take something that clearly wasn’t working? My consultant decided it was best to discharge me if I wasn’t willing to take the pill he’d suggested.

My new Dr referred me to an IVF specialist in Sheffield, and prescribed me pain relief that reflected how strong the pain was. He understood.

My new consultant wanted to start me on a hormone impant injection; Zoladex. I was hesitant about this as I’d read online that there were a lot of side effects. But I was at the end of the line, running out of options.  I had the injections, they hurt, and my post-zoladex bleed was horrendous but I haven’t had a period in 3 months. I haven’t had pain in 3 months. THREE. MONTHS.

Don’t get me wrong, I’ve had discomfort, I’ve had bad side effects, but it’s the lesser of 2 evils.

Today, on my 25th birthday, I’m living my life, I’m working, I can live and love and laugh, again. It’s been a long, long road, and there’s only more to come.

I can only thank my family, friends for all their support and kindness over this last year. Thank you for understanding, I can only say sorry for my absence these past 2 years, my new year’s resolution is to attempt to make amends and reconnect this year.

My husband has been so, so supportive. He’s been my rock and full of understanding and patience. I don’t know what I’d have done without him, I’ve been so lucky.

 

And finally, to my new GP and specialist consultant. You have restored my faith in the NHS. I’m very grateful.

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Then, my 24th birthday

 

 

Now, my 25th birthday

Now, my 25th birthday

 

A xo

 

Zoladex vs Endometriosis

On 20th November 2015 I had the first of my Zoladex injections to help relieve the symptoms of Endometriosis. I look at this as the final straw. The last option to my growing list of failed attempts to control pain, manage my symptoms.

“Zoladex (goserelin) is a man-made form of a hormone that regulates many processes in the body. Goserelin overstimulates the body’s own production of certain hormones, which causes that production to shut down temporarily.”

Less than a week later I go through a bad flare-up, extreme cramping, agonising pain and bloating. Having to take all my strongest pain medication and struggling to stand. I literally didn’t know what to do with myself, I was having to take heavy pain killers along with sticking heat pads all over my abdomen and back. However, I was told later that this was “normal” and is called a ‘post-zoladex bleed’. This can sometimes exaggerate the symptoms of endometriosis. I was also told that this settled down after a while…

And it did. The first month came and went, I was just heading into the second month, second injection, when the hot flushes started. As the injection works, it imitates menopause. The zoladex injection is like a chemical menopause, shutting my ovaries down so the endometriosis cannot grow or fluctuate in any way – hence, no pain. Or that is the idea.
For a couple of years now I have been listening to my mum (who is mid-menopausal FYI) whine about hot sweats and lack of sleep and mood swings, each time earning an eye-roll from me. I will NEVER roll my eyes at my mother again. EVER.
These hot sweats come and go all day, and they are ferocious and spontaneous. I wake up in the middle of the night feeling as though my blood is boiling beneath my skin. That awful feeling when you get stuck in a jumper that’s too tight? (I felt it briefly last year when I found myself, regretfully, stuck in a dress) I feel that for a split second, when waking with a hot sweat, feels a though I’m suffocating as I’m much too hot.

This is still happening to me. But it’s the lesser of two evils I suppose. Volatile body temperature or constant pain?

So I’m 2 thirds of the way into my course of 3 Zoladex injections. My last one was 18th December; each one isn’t as bad as the last. Although I’m left bleeding, sore and bruised after every injection, it doesn’t hurt as much. I figure I’m used to being a human pin cushion. I haven’t had a period in nearly 3 months now, I’ve had very little bloating and a minimal amount of pain. The only complaint I have are the side effects of the injection.

This tells me that the ultimate treatment, the only thing that can really help me (in the long room) is a hysterectomy. A hysterectomy will push me into early menopause, effectively doing exactly what the zoladex injection does and is a more long-term plan. I’ve finally found something that seems to work. But before I commit to menopause permanently…

 

…2016 is my ‘HAVE-A-BABY Year’

 

Happy New Year!!

 

A xo

 

*I’d love to hear about the treatment you’ve used for Endometriosis… comment below

*Any ideas to naturally boost fertility?

 

Endometriosis on BBC Radio 2

This week, Endometriosis has been given a new platform by Jeremy Vine on BBC Radio 2.

I am happy to see that the word ‘Endometriosis’ is being talked about, it’s getting out there, people are speaking up.

What I didn’t appreciate was that they made it sounds like there was a lot of different options for treatment. The guest speaker politician spoke of her traumatic experience of periods and pain. But she implied that she no longer has Endometriosis since starting a combined contraceptive pill.

There is no cure for Endometriosis.

The biggest impact came when women suffering from this illness called in to discuss their experience. I became so overwhelmed, so emotional under the realisation that I am not alone. The understanding that there are 2 million and more women suffering with pain and infertility and the effects this illness causes. That I can totally get what it’s like and just how debilitating it is.

To listen to Jeremy’s show, click here.

Salute to Radio 2.

A xo