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

Advertisements

Post-op Realness (graphic!)

On 20th September, I had my second laparoscopy.

Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.

I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.

 

Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”

Continue reading “Post-op Realness (graphic!)”

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.