Recent Hurdle

(Note: This could be distressing, caution advised)

That morning started like any other morning.

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

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

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

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

I could hardly breathe.

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

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

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

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

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

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

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

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

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

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

‘Why is this happening? Again?’

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

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

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

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

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

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

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

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

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

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

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

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

with morphine.

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

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

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

Some theories were:

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

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

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

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

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

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

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

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

I will never know.

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

I doubt that there was ever any infection.

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

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

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

xo

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Abdominal Sacral Massage

abdo massage

Since I was diagnosed with Endometriosis, I have tried to be open minded. Most of my treatment options have involved medical intervention; medications, surgery, hormone treatment, injections, the list goes on…

But every now and then I stumble upon a treatment or a theory or something that seems so ‘out-there’, it might actually work!

I was told about Abdominal Sacral Massage by a dear friend, one who is also trying to conceive. We were discussing what else we could do to improve our chances; we are already day-counting, vitamin taking, diet-watching & sexing it up at every chance we get. After a furious google search, we finally found Abdominal Sacral Massage.

This massage technique is used for digestion, helping to ease constipation and bloating (great), to support emotional health and fertility with its’ gentle healing (double great!) and can improve your menstrual health by regulating periods and helping ease PMT (GREAT, GREAT, GREAT!).

So, on paper, this ticks all the boxes, it seemed like a fantastic idea and we couldn’t believe we’d never heard of it. Especially, since I’ve been struggling to manage my Endo symptoms for over 4 years. And as no stranger to holistic therapies, I was eager to give it a go, with complete faith that it would be a positive experience.

A week or so later, we had the appointment. As we travelled over to the, salon…spa… I was quite excited, unrealistically optimistic that this would solve all my problems and hopeful that I’d be pregnant sooner than I thought. It is set in lush countryside and it was a bright sunny day. Our therapist is a down-to-earth, put me right at ease, sort of lady. I felt relaxed already. We filled out some paperwork, letting her know what we needed help with most. Where do I start? Then got down to business, choosing essential oils. We had to choose a high, middle and low note. All 3 would target problems and work differently. I chose ylang-ylang, cedarwood & clary sage. It was a heady concoction. Now that it was time to get naked (I kid, I still had underwear on!) I started to feel nervous. What would it be like? The therapist herself said it wasn’t a treatment that she does regularly, mainly because people don’t know about it but she did gush about its many benefits.

My friend went in first and I sat for an hour, glad I had brought a book. When I read I tend to get absorbed into it and the time passed quickly. My friend soon emerged, looking relaxed, happy and tired.

My turn.

The massage bed had a heated mat and there were plenty of towels to protect my modesty. The lights were dimmed low and there was a steamy aromatherapy machine pumping out geranium flavoured mist; which happens to be my favourite essential oil and fragrance. I felt great.

The abdominal sacral massage focusses on the area between the ribs at the front to lower abdomen, between pelvis. It’s quite a deep tissue massage, I knew this but was willing to give it a go.

My stomach has been somewhat of an issue for me. Not out of vanity or how it looks or feels, the issue stems from self-preservation, fear and anxiety. I was not prepared for the emotional impact of having a stranger touch me in a place that has caused a lot of pain, trouble and anxiety. So, when she laid her hands on my abdomen, I had to fight the urge to push her away. I immediately guarded myself. This physically reaction prompted an emotional one. I started to mentally examine where this response was coming from, all the while extremely uncomfortable and willing myself to relax. Thinking about it, I clearly recognised that this automatic reaction to tense up when someone touches, or looks like they will touch, my stomach has been ingrained only in the last few years. Since my endo flares became so bad they required hospital admission or surgery. Even when my husband touches my stomach, I initially tense before relaxing. It only lasts a split second but my body is used to hurting there.

I was shocked that I was able to realise this change in me, triggered by this massage. I was glad to have this experience, if only because I got to learn a little bit more about my body.

The first part of the massage included a lot of ‘kneading-like’ action from ribs to hip bone. I was just thankful that I was a little bit more dough-y and heavier now than I normally am when I’m symptomatic. I can’t say it was relaxing, it was quite a deep massage which created some discomfort for me.

The second part of the massage focussed on my back; bra line to coccyx area. This was much nicer and I was finally able to relax. The essential oils had begun to permeate my skin and the air around me, I could take deep, soothing breaths, this part I liked.

The final part was a face, neck & head massage combined with some Reiki healing. The light pressure on my head and neck really helped ease some of my tension, some which I didn’t know I’d been holding! Reiki doesn’t suit everyone; it’s a treatment that you have to be open to in order to get the most from it. I could feel it work for me. Only a few minutes after she moved onto my face, my whole body started to tingle; from head to foot. I then went all goose-bumpy. I could feel little shocks, almost like I’d been electrified.

Over the next few days following the massage, I felt some discomfort. My stomach felt sore and tender to touch, as though it’d been through an ordeal. Nothing else much happened. I half expected my period to start, I was hoping it would trigger its reappearance following the end of my latest zoladex treatment, in January. But, there’s been nothing.

I don’t know whether I would have another treatment, maybe it is like acupuncture, it gets better after each session. Truthfully, I’m reluctant to try it again. It wasn’t painful and I may not have seen any benefits yet, but just because of my emotional discomfort throughout, I don’t think it is for me. Maybe in a few months, I will give it another chance.

After all, when it comes to searching for a way to improve my life with Endometriosis- I’ll try anything.

Out of the frying pan?

*DING DING DING* Round Two!

As a woman, I am no stranger to doing things I don’t want to do. But as a woman with endometriosis, I am also no stranger to pain or discomfort. So when I was told I needed to have monthly hormone injections again as part of my treatment to try and get this condition under control, I should accept it easily, shouldn’t I?

No.

There is not a single part of me that wants to accept this treatment. Not a single ounce of me that is OK with it.

In April, following 2 surgeries and almost a year after we decided to start trying to conceive, my consultant told me I should go back on the zoladex injections. I was devastated. It was proving too difficult to manage the pain and the ‘trying’ part of conception was near impossible with the levels of pain I was experiencing. I was in bed every day, my GP had introduced a pain patch and periods were horrendous. And the cherry on the cake? I’d still not managed to conceive.

But I was doing all the right things; I was taking the vitamins, I had the ovulation sticks and the fertility tracker and I was even taking my temperature to monitor my cycle. Still- nothing.

Reluctantly, I agreed to go back on the menopause-inducing drug.

“What’s it like? It’s like being impaled by a javelin and expected to be grateful for it!” 

The night before the first injection I sobbed. It was so unfair. The resentment welled up inside me until it spilled out in fat, hot tears. And those tears fell in abandon that first month. I have a hard time swallowing them, even now.

It wasn’t the pain of the injection, it wasn’t even the nasty side effects or the fact that it would 100% prevent conception. My resentment lied in the treatment itself. The fact that I was given no alternative; it was either this injection or agony every day. Rock meet hard place. Neither was what I wanted. I felt like an animal, backed into a corner. Have you ever had to do something everything inside you rejected?

I’ve never felt so out-of-control of my own life, of what happens to my body. And the doctors never ask what I want! Like this was the only option and I should be happy about it.

No.

And worse, when I spoke about it, about my feelings and how much I hated this treatment, some responses was one of indifference: “Well, which would you rather have? Agony, pain and being in bed every day or an injection and a few hot flashes?”

NEITHER! Is that too much to ask?

I know from the outside it looks like a ‘done-deal’, a no-brainer. I rebel against everything about it.

Today, I have had my 4th injection of this cycle. Last time, August, I upped my dose from a 3.75 (monthly) injection to a 10.8 (3-monthly) injection. The difference? It’s a much bigger needle, but one stab lasts 3 months. I decided this would be an ‘easier’ option when I started to have panic attacks prior to the injection due dates and appointments.

I am 7 months into this cycle. I haven’t had a full night’s sleep in a long, long time, I feel exhausted; mentally and physically. The hot-flashes are enough to cause spontaneous combustion and my mood swings are enough to give me (and my husband) whiplash. I don’t even get any relief using HRT as I had to stop it after it caused chest pain and SVT.

But, I haven’t had a period in 7 months and the endo pain has abated. And I am so thankful of that.

 

 

 

 

Things I wish I’d said Vol.1

safety-pin-lips-things-i-nver-said

Things I wanted to say but never did:

  1. There are more important things in life than making sure your eyebrows are symmetrical. I’m sure the feller running late for work, or the overworked carer just finished from a night shift, or the mother juggling a lunchbox, book-bag, P.E. kit and a whiney child on the school run- have all failed to notice your wobbly brows. Relax. 
  2. Don’t think I didn’t catch that, you’re not subtle. -Responding to every person and their facial expression after they hear the age difference between my husband and I (FYI, it’s 16 years and IDGAF – he’s a GOD). We neither want nor need your approval.
  3. No I don’t like drinking and if that makes me boring, I’m fine with that. But good for you and your 6th glass of JD- crack on. I’m happy being out, with my Coke- I don’t feel sad and you don’t have to pity me or pressure me into a vodka shot. Thanks though, and good luck with your hangover.
  4. I don’t have my life figured out yet and I don’t have a 5 Year plan. Does this make me anxious? Sometimes, yes. But you’re not making it any easier by mentioning it or looking at me with “poor you” eyes.
  5. Did you forget we all went to the same school? Yes I was there, witnessing your Tango years and seeing you bully others less confident than yourself. Remember that before you look down your nose at me from the top of your ridiculously high heels.
  6. “Have you tried…? What about…? That tablet is crap…” – Yes, please tell me how you’re going to cure my chronic illness, and please list all the things I’ve already tried while I smile and nod with my mouth tight shut (I know you mean well)
  7. I am 26 years old. I know to look both ways before crossing a road, I know not to talk to strangers and I always take care (thank you Grandad, ILY). You don’t need to remind me to drive safe or eat plenty of vegetables, I have managed to live this long without (too much) mishap.
  8. I should not be labelled a hermit, shut-in, shy or introverted just because I spend all day inside, in my room, reading a book. I like spending time by myself. This is not a cue for intervention, I do not need to get out, be forced into social gatherings or be dragged on a brisk walk for fresh air. I’m fine.
  9. And whilst I’m about books- Yes, I am reading a ‘saucy’ book and it’s bloody fantastic. As my husband calls it: “Porn without Pictures.” Allow me to lend you a copy so you can remove that stick from your butt and join the rest of womankind who are also on the Fifty Shades Train (Most of us have been riding for a while, and we shouldn’t be ashamed of it anymore!)
  10. Don’t ask me to explain how I got that bruise. I don’t need a safe word. I am just clumsy. I can laugh at myself, please laugh with me- not at me!
  11. “You don’t want more than 1 baby?” As if it’s an easy thing to do?! It’s basically making a person! Unfortunately, for some women it isn’t as easy as A, B, C. Please be more considerate.
  12. Don’t pass judgement on my diet. Yes, I like chicken nuggets and smiley faces and ketchup. I know this sounds like the diet of a toddler, but I also like spinach and Brussels sprouts too. Just not as much as I loooooove cake.
  13. “It’s been a nightmare, are you sure you want kids?” Of course I’m sure, this decision wasn’t made after hearing that baby-making is super fun and motherhood is a breeze! Neither will it be swayed by an awful afternoon of tantrums and smelly nappies.
  14. “You can have mine!” Don’t say this, because next time I’ll show up at your front door with adoption papers and a bottle of fizz.
  15. It was not my intention to offend with this list. I have to right to Freedom of Speech. A fact I must remember the next time someone offends me with their ignorance, arrogance or lack of consideration.

“If you are always trying to be NORMAL you will never know how AMAZING you can be.” -Maya Angelou

 

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.

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