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.

10922735_796720353732755_1113679648465959614_n

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

Despair and Defeat

“I am more than this, I am more than pain, I am more than this illness.”

Recently, I have been making a considerate effort to try and get my life back to some resemblance of normalcy. This is hard. I have been walking a thin line between despair and defeat.

After not being able to manage my pain during a particularly prolonged flare up and deciding to come off hormone treatment, my body is exhausted. My mind is almost broken as it takes everything for me to plaster on a smile and go about my day, my illness and melancholy invisible to those around me.

Hearing the same words from every medical professional, with no clear resolution, is so disheartening. Being told there are limited options of treatment left. Being told the first go-to treatment would be surgery, which I’ve already had no more than 10 months ago. The second go-to is pregnancy and my heart breaks each time this is suggested. Get pregnant. If only it was that easy. The fact that those words are thrown around as easily as they are, makes me feel like I’m not fulfilling what it is to be female. Like I’m faulty, broken.

I’m about to start the last in a long list of treatments. It is the last, as I literally don’t know what else we can try if it doesn’t work. Zoladex. Chemical menopause. Injections into my lower abdomen every 28 days. Menopausal symptoms- hot flashes, low mood, weight gain, acne, personality changes. None of this sounds like a good time.

I am scared to start this. I have some serious reservations about this. My biggest concern is the mood and personality changes. When I tried the Depo Provera injection in February this year, I went from me to suicidal in 2 weeks. Will this happen again? Will I still be me?

It’s hard for me to be positive. But if I’ve learnt anything along my Endo journey, it’s that I’m stronger than I think I am. All of what I’ve been through hasn’t come easy, why start now?

 

If you’ve tried Zoladex injections to treat Endometriosis, let me know your experience. What works for you?

A xo

This is the face of Chronic Illness…

Do I look sick? This is the face of an invisible chronic illness. 

Inspired by indisposedandundiagnosed

I got married!!!!!

20th December 2015, my wedding day – 1 week out of hospital

10922735_796720353732755_1113679648465959614_n

January 17th – 1 day post-laparoscopy

11336835_10153398641988140_4458496305314794517_o

May 2015, surviving on heavy pain meds

2015-05-29 17.09.20

End of May 15 – Pain umanageable, triggers SVT

In half of the photos in the post, you wouldn’t even know that I was in severe pain- taking drugs such as Tramadol or Oromorph just to be able to stand upright. In the other half, it is plainly obvious that something is not right. When I hear: “But you don’t look sick”, something inside me shrivels up, like I have to prove that I’m ill, as if I don’t struggle enough each day…

Let’s see your picture; what is the face of chronic illness?

A xo

It’s OK to ask for a 2nd opinion

I have been struggling with extraordinary abdominal pain, fatigue and heavy bloodloss which eventually led to being diagnosed with Endometriosis.

I had my Laparoscopy on my birthday in January 2015. Since then I have still had constant pain. Everyday. It has been an exhausting journey. I have been told to try for babies sooner rather than later, I have been told my illness is chronic and I will have to live with it for the rest of my life.

Now, in my personal circumstances, we always knew it wouldn’t be straight forward for me to conceive, my husband and I had planned to save up and go for a clinic where he would undergo surgery. This would be in a private clinic as it isn’t available on the NHS. My diagnosis then put a time-sensitive pressure on us to conceive, which has not helped my recovery or state of mind at all! How am I going to save £3000? I have left full-time work as I can’t manage my pain during a 40hr work schedule! It’s impossible. Hence, my mood deteriorated.

I have been in constant pain, having to take very strong pain killers; called analgesics. The side effects include: drowsiness, nausea, headaches, itching, insomnia, changes in mood and they are just a few. When on these sorts of tablets, I would lose hours, days at a time, not being able to function, falling asleep, being emotional, it was a nightmare. And what’s more, I got tired of visiting my Dr and being met with a blank expression and the ‘trial & error’ merry-go-round; “try this?”

I ultimately reached rock bottom. I was crying all the time, I was scared I would lose my job, my family were all worried about me getting addicted to these tablets.

THEN… 

A good friend & relative of mine did some investigating and told me to register with a different Doctor’s surgery. At this new surgery, I was to ask for Dr D (confidentiality!!) and that he specialised in symptoms like mine, women’s health etc. What? Why hasn’t my Dr mentioned this before? So I went and registered, filled the forms out, spoke with a lovely receptionist who listened intently to my story and signed me up with Dr D as my named GP. Yes.

In 10 minutes, Dr D was able to give me more reassurance and information that in the 18 months previously. He told me that my endometriosis was not under control. He told me that the next stage would be a chemical menopause like Lupron injections (ermm…No Spank you!) and then it would be surgery; hysterectomy. He said that if I was suffering like this at 25, it wouldn’t be much better at 35, and we would be looking at surgery definitely. He gave me other options about our fertility problem and when I researched this at home, it seemed more practical and much more achievable! He understood my need for pain medication, reassured me that I was using them correctly, and when I asked for slow-release Tramadol (thanks to my Twitter sister @BattleWithEndo!) he didn’t hesitate to sign the prescription.

Dr D has given me a plan, a path to walk and a destination. After so many months of working around lost in my own pain and hating myself and the health system, it feels so good to have some clarification.

By no means am I pain-free but it’s manageable. I am only part way through my journey, but at least now I’ve got a map and things have started to show improvement. My bleeding seems to be settling, I have a little more energy (thanks to vitamins!) and I don’t have as many as the nasty side effects. I’m only taking FOUR tablets a day now.

I feel like me. At last.

There is hope. Don’t feel bad for going to a different Dr. Your health is important and you are entitled to expect and ask for what’s best for you.

A xo

No diagnosis? Misdiagnosis!

Can someone just sling a spanner in the works? Please?!

Below I have drawn a pretty (or not!) picture of what having endometriosis entails and how each things affects the next. It literally effects every aspect of my life. As you can see, it’s a viscious cycle.

image

I’m unsure what can trigger the pain as I can have it through the night, when I open my eyes in the morning, at work, after the gym, anytime. I have read up online and through reference books, I have spoken to hundreds of women in online forums and support groups and don’t seem to be any wiser on how I can help myself!

Before all my symptoms became too much to bear, I had a positive outlook on my life, positive opinions of the healthcare systems and believed I was in good health.

How naive was I? For the past 15 months I have been greeted by blank faces, questioning looks, even expressions of doubt, when seeking help from the healthcare service. I am very much treated on a ‘try this’ trial and error basis, I seem to come out of the Dr’s room feeling more confused than when I went in and have yet another prescription in my hand. I have seen on the news that Doctors are sometimes over-prescribing and overdiagnosing their patients, which is bad. But I must be on the other end of the scale as I have been underdiagnosed. I have recently had a hospital admission where the on-call gynae actually looked surprised at seeing my surgical scars even after I had told her my sad tale. As if I’d lied about it?!

I have reached an all time low in my life and have been crying in Dr’s rooms for months asking for help. I have expressed my desire to have an hysterectomy at 24. I just want it to go away at this point. I have told them I find no joy in my life anymore. Their response? Anti-depressants. More meds.

I don’t like using pain killers so how am I supposed to react to this? It scares me. I am constantly being reminded that ‘these drugs are addictive’ and ‘be careful how many you take’ and so I try to avoid taking them if I can. I can’t always manage it. If I don’t take the pain medication when I need it, I’m literally in the foetal position for hours. I am now at the point post-diagnosis where I have accepted that this is how I am, which is depressing in itself much less without the pain.

Anti-depressants were the last straw. I cannot start that medication. I have decided to try and take control of my life. Hoping to.

I have been to the gym this morning, taking it slowly, I have gotten home and my stomach has inflated to the size of a beach ball, my back hurts, my pelvis feels too wide for my body and I am so tired. All of the time. Tired of my body fighting itself. Pretending to be ok, everyday, is exhausting. I just want to be as normal as I can.

I’m just about done with this shit.

A xo

My first time- Acupuncture

When I was told that I’d have this illness for the rest of my life, I had the naive ideation that I would just take some pills, some Feminax and everything would go on as normal. Oh, how wrong I was. Chronic pain has seeped into all the cracks of my life, bringing with it- its entourage; fatigue, depression and an unhealthy reliance on pain killers. I am not addicted to pain killers, not yet, but I do rely on them most days. I have had to search all over the web, looking for natural methods to ease the pain, alternative medicines that don’t make me look like a zombie, so I don’t lose days at a time during my ‘pain storms’. For this I have put together a survival kit: heat pads, hot water bottle, Tens Machine and a long soak in a hot bath.

Within a month of my diagnosis, I had visited my GP several times and was given different prescriptions over and over. I changed my diet, reduced my caffeine, dairy intake and cut out red meat entirely, hoping that all the online forums were right. In April, I decided enough was enough and it was probably time to think outside of the box. Acupuncture?

Acupuncture is:

  • “a system of complementary medicine in which fine needles are inserted in the skin at specific points along what are considered to be lines of energy (meridians), used in the treatment of various physical and mental conditions.”

I had my doubts. But, in desperation, I picked up the phone and stated my interest in having a session ASAP- to help with the pain. Within a few hours, I was contacted by the acupuncturist. A lovely man that seemed to understand my illness and empathise completely- which helped in itself as I was used to receiving a lot of blank faces when I disclosed my endometriosis. He seemed eager to help and sounded so sure that he could help; brimming with complete confidence in his craft. I was given an appointment the very next day.

I travelled the few miles to the therapy centre, my anxieties growing, starting to feel uneasy. The idea of having needles all over my body was not comforting. My worries grew and soon I had the image of Pinhead from Clive Barker’s ‘Hellraiser’ answering the door, beckoning me into the treatment room, to my torture. I have included a picture, just to show you how quickly my imagination escalated! Oh dear.

Pinhead

Pinhead

The therapy centre is off the beaten track in a village just outside of my town, I had never really seen the area very well or visited it much. It was a lovely, uncharacteristic spring day as we drove down a lane adjacent to fields with spring lambs bouncing through the grass. My spirits lifted even more when I saw the building. New and shiny, it stands in what appears to be the grounds of an old school. With the sun bouncing from the round window and a light breeze through the trees, I walked the paved path and spied an overgrown tennis court with weeds covering the court lines and growing through the net. It truly is a lovely place and if you have the chance to look around, please do. You can find the website here.

Anyway, enough of the location and my wild imagination. Next- bring on the actual experience! A short young man welcomed me into building. It is light and airy, full of windows and has a minimalist style. I started to feel better already. I turned to my husband to seek reassurance; we had suggested him waiting around or accompanying me but decided against it in the end what with the session possibly taking over an hour. I was a big girl and didn’t need him to hold my hand- much.

Once in the session, I told my story of confusion, worry and pain. I told the acupuncturist of all my hospital visits, my surgery, my medications. He asked about my diet and lifestyle. I explained that since all of this started I’d not really had much of a lifestyle. When he urged me to discuss my diet, I faltered. I was embarrassed. At that point, I pretty much survived on a diet of what I ‘fancied’. My appetite was poor, but I had to eat as I was taking medication so it was mainly things that I liked; junk food. As I reeled off my list of food stuffs, I became increasingly aware of how it sounded like a child’s menu without adult supervision; chicken nuggets, noodles, chips, chicken/tuna pasta, pie, smiley faces and broccoli. I’m pretty sure if Turkey Twizzlers were still in production, they’d have been on the list as well! He laughed and wasn’t too hard on me about it.

It came time for pins. Pinhead’s ugly, cruel features flashed in my mind instantly and then was forgotten as my acupuncturist talked me through the procedure. He is extremely well trained and qualified. He had learned in China, had a university degree, but most of all, it was his absolute assurance that it would be beneficial to me. And after months of medical professionals “trying this” and “giving this a go” – it was about time! He told me that he could feel how different parts of my body were poorly based on the different areas he could take my pulse. For example, on that day, through close monitoring of my pulse, he could tell that my lower abdomen and intestine were extremely enflamed. Woah. Even CT and Ultrasounds scans, X-rays and blood tests couldn’t tell that in my 5 hospital admissions.

Bring on the pins. The first few were a little cause for concern; going in my feet and toes! Ugh. This was hell for me, the idea of having a needle in my bony feet, is harrowing. I felt them go in, but as I wasn’t looking, it didn’t hurt, and they were quickly forgotten. I had a total of 7-9 needles in my legs, feet and wrists. He continued to check my pulse through the procedure and after the pins were in for 20 minutes confirmed that my pulse showed that the aggravated body parts and eased and settled down a little. He stated that I may need ‘top-up’ sessions (it looked like I would be seeing more of Pinhead) and that he would contact me to see how I was feeling.

On leaving the session and building, the sun was shining. I don’t know whether it was a psychological thing as I expected to feel better, whether the pins had actually eased my raw organs or whether my painkillers had kicked in, but I felt like running. I felt more upbeat, laughing as I retold my experience to my husband, including all the Pinhead bits! My body felt alive, tingly almost, I felt ready to run a marathon; that sensation when all your muscles tighten in expectation of adrenaline. Everything felt slower, I felt ready, better able to cope with the day. It was £40 well spent.

I was under the impression this would last a week. It didn’t. Within a few hours I started to feel very tired, my muscles ached and it was hard to keep my eyes open. I collapsed into bed for an early night. The next few days I had pain but it was more manageable. I was able live close to normal, doing things I would normally do; work, eat, walk. And just for that, I would recommend, wholeheartedly, the Acupuncture experience.

A xo

Dear Mr Prime Minister,

Firstly I’d like to congratulate you on your recent victory in the 2015 General Elections.

I am hoping that the rise in UKIP and Labour votes and how passionate the British citizens are about the National Health Service have caused you to have second thoughts about disbanding it.

I am only writing to voice my concerns about your plans to make the NHS private. Please don’t. Not only is this country proud to have such a great service but the employees within the NHS work hard to make it so. I know it doesn’t always have a good light and I’ve had my fair share of rubbish experiences via the NHS, but it’s a facility we desperately need in the UK.

I am 24 years old. I graduated university at 21 with honours and started working full time in my chosen field within a few weeks of getting my diploma. I had 4 jobs within private facilities and the NHS; working in mental healthcare. I pay national insurance and starting paying back my student loans. I was doing well.

Last year, I visited my GP with complaints of increasing pain every month, coinciding with my menstrual cycle. I was referred to a gynaecologist. He gave me medication and refused to send me for surgery, thinking it would be too invasive. Six months later, in August, I was so overcome with pain I had to drag myself to the bathroom, crawling into the bath to try and find some relief. I contacted NHS Direct (111) and they advised I sought urgent medical attention. My partner drove me to A&E. I was admitted to hospital and given several tests which all proved normal. I was sent home.

I was admitted to hospital twice more last year. Once in September for a week, where the staff in hospital helped me manage the pain before discharging me and referring me to a specialist. The second time was a week before my wedding. The staff, once again helped me manage the pain, which was excruciating- I can’t even describe it. And I only had 3 days on my feet before I got married, but I made it!

In January 2015, on my birthday, I had my first Laparoscopic surgery. My consultant found that my ovaries had fused to my pelvis and I had adhesions all around my reproductive organs and pelvis. These all had to be lasered away. I was diagnosed with severe Endometriosis.

Endometriosis is a chronic illness in which endometrial tissue (normally found in the uterus) is found in other parts of the body. It is commonly found in the reproductive area but can be found in the abdominal cavity, it has even been found in the lungs. Each month, hormonal changes in the body trigger the endometrial tissue to dissolve (a period), which means the tissue in other parts of the body bleeds as well. This can lead to severe pain. 1 in 10 women suffer with Endometriosis. There is no cure.

It is now 5 months since my surgery and I am in pain every single day. I have had to leave my full time job in healthcare as I was unable to do 12 hour shifts. I now work part-time as a receptionist. I can pretend to be alright most days and manage to fool most people. But unfortunately, I am not always able to do so, leading to time off work.

If you decide to make us pay for medical treatment or healthcare, I will not be able to afford to manage the awful pain I am in. I am already on several different types of pain relief and anti-depressants. I benefit so much from the NHS and they have helped me a lot. I would go out of my mind if I didn’t find some relief from my chronic pain.

So, I am pleading with you Mr Cameron, please please do not do away with the NHS. I know I am only one of thousand’s who wouldn’t survive without it.

Yours faithfully.