We need to talk about Ectopic Pregnancies

Some experiences just stay with you and follow you around. You want to shake it off and move on but it seems to tenaciously hold on. I was diagnosed with an ectopic pregnancy about 5 weeks back and this is my journey so far. I’d heard about ectopic pregnancies, and feared it but never thought it was going to become a part of me. Let’s rewind back to the beginning. I hope my story will help other people along the way, and shed some light into ectopic pregnancies as they’re classified as one of the primary causes of mortality in the first trimester.

Before the ectoptic

We started trying for a baby about 5 months back, my husband and I both have extremely busy jobs, so finding the time for baby making was in itself a challenge. After a month of random trying and failing, I was temping and testing for ovulation with OPK’s. The scientific side of my brain said ‘measure all the things’. It was great to discover so much about my body and my menstrual cycle. The data said I had a very regular menstrual cycles, I could even set the date by my period.

After 4 months of trying and failing, the anxiety was getting to me. At the end of month 4, I opted to have an ultrasound (US) to check if everything was ‘normal’. This was the first time I came across a thing called transvaginal ultrasound, little did I know that I would have many many more in the days to come. The US came back normal, the sonologist confirmed that I had ovulated from my right ovary. She could clearly see the corpus luteum from which an egg was released and it all looked fantastic then for the cycle.

Looking back at this time, I often wonder if there was anything odd about this cycle.

  • I had noticed a sharp pain on my right side, I thought it was just ovulation pain. This could have been a sign of a pelvic inflammatory disease, one of the primary causes of ectopics.
  • After eating a dodgy takeaway, I had a bout of diarrhoea and crampy colic pains all over my abdomen. The diarrhoea persisted for a few days and continued on and off through the next few weeks.
  • Early on in the cycle, I suspected I was getting Bacterial vaginosis. I had the symptoms but as quickly as it came it went away. I wish I had gone to the GP or a sexual health clinic immediately.

I can’t really put a finger on what caused the ectopic pregnancy. But the combination of signs did not point to something going very wrong in my reproductive system.

It’s a positive

I had just come back from a work trip and I had completely forgotten that it was time to do a Home Pregnancy Test (HPT). On a Saturday morning I did a test from a cheap internet brand of HPT’s and I did not see anything. I posted images of my test stick on a reddit community of experts for line spotting — TFABLinePorn and they felt it was definitely a positive. I tried again the next day with a high street brand and it was a positive indeed. I still remember how amazing it felt. Little did I know that it wouldn’t last.

First signs of an ectopic

During the week that I thought I was pregnant, I was beyond jubilant. I had a spring in my step and I bounced off clouds. I made an appointment with my GP, who was delighted with the news but also cautiously explained to me the dangers of ectopics. I still had mild pangs of pain on my left side (opp side of the ectopic). I got some baby magazines on what to expect from the GP, appointments with the mid-wife, and apps on my phone. If there’s one thing I regret, it would be the sense of expectation I had built up before my first ultrasound. In the UK, the first ultrasound is only scheduled at week 8 and I was still only on week 5. I wish I had waited until the first US before I decided to get excited.

Around week 5.5, it was a Monday, and a busy work day. I felt light headed. It had been an extremely tiring day and I thought I just needed a burst of energy. I picked up a snack and carried on. At some point when I went to the toilet, I had a sense of fear — I could smell blood. I noticed I was bleeding bright red, and it did not feel right. I had pain shooting through my right leg. Something I had noticed over the last week. I went to a quiet place, and called my doctor. She advised me to go to the A&E (Accidents & Emergency department) immediately as it could be what we feared worst — an ectopic. I rang my husband and made my way to the emergency department of the nearest hospital.

Nothing prepared us for how busy the A&E department would be. It was buzzing with activity and we felt completely infinitesimal in there. I got a nurse to see me — she asked me how much I was bleeding, and I told her not much but enough to worry about it. I was told they were under-resourced and the gynaecologist was hard to find. The bleeding stopped, and since I was stable I was sent back home and asked to come back for a scan the next day.

The hospital arranged for me to come into the Early Pregnancy Assessment Unit (EPAU) the next day to have an US investigation. One thing I remember very well is that the sonologist was struggling to find the foetus in my uterus. 30 mins into the transvaginal scan, she asked me to do a HPT and return back with the result. Looking back, I guess she couldn’t believe I was pregnant. The positive HPT said I was pregnant, and she looked further and found the ectopic. Her face went pale. I knew what was coming and I truly didn’t think I had the strength to face this.

Methotrexate

I was told to prepare for surgery although my condition was stable. Little did I know that tubular ectopics are treated as a gynaecological emergency as the fallopian tube could rupture and cause severe internal bleeding.

There was a vaginal swab taken, and some blood was drawn and I was admitted. I went into the hospital expecting to be home within the hour, but two days later I was still in hospital. I had two options — surgery to remove the tube, or medical management to remove the ectopic pregnancy. As I was stable I was advised to opt for the more conservative medical management with methotrexate. On day 3 of my hospitalisation, I was given a single dose of methotrexate — and observed for an hour and sent home.

On treatment with methotrexate the pregnancy hormone — hCG, is tracked very rigorously. When I started my BhCG levels were 1128.

I had no side effects from methotrexate during the first 4 days. I had a pretty good appetite, I was avoiding all folates which meant no green leafy vegetables.

Below are my treatment and symptom logs.

Day -2: BhCG 1128

Day 0 : Single shot of methotrexate administered

Day 4 : BhCG 2652 (increased by more than 100%)

Day 7 : BhCG 2245 (reduced by ~15% required by the treatment course), US showed no increase in size of the ectopic.

I experienced heavy bleeding during these days, cramps and some excruciating pain where large clots were passed. I believe I also passed a Decidual cast — large greyish tissue lining of the uterus which was very painful and scary looking.

Day 14: BhCG 1323 (reduced by ~40%). US showed a slight increase in the size of the ectopic.

At the Day 14 scan, it was observed that the size of the ectopic mass increased from 20mm to 23mm. My doctors were very alert and expected an imminent rupture. I was again given the choice between a surgery and continued medical treatment. I felt extremely weak in the face of this tragedy, and I could no longer take the anxiety. I was already toying with the idea of going through with a surgery. However the doctor recommended waiting if I am able to. I was feeling a mild pressure pain, but nothing very significant. It was decided that I wait.

US showing the right tubular ectopic at 23.2mm x 17.1mm.

Rupture and surgery

On the next day I woke up at 4:30am and walked to the toilet. I was in quite a bit of pain, it was a pressure pain like nothing I’ve felt before. It was excruciatingly painful to pass wind, and I felt both panic and pain. I woke up my husband and we went to the A&E. I was given pain killers (pretty strong ones) and some blood was drawn. The pain I had earlier, had worn off in a few hours, however I was being prepared for an emergency surgery. It was found that my blood pressure and haemoglobin counts looked stable.

I was ‘almost’ returning back to normal, and yet again I was debating whether to go in for a surgery or return back home. I was in A&E for about 4 hours, when a doctor came in and suggested a US to determine the line of treatment.

A few hours later, I was lying down with a transvaginal probe in me, and the sonologist confirmed that the fallopian tube had ruptured and I needed surgery right away. I was not in a lot of pain, more shock that came over me. I walked back to the hospital bed and waited for surgery. Things happened really quickly after that, I was told I was going for a right laparoscopic salpingectomy (removal of the tube). Once the tube has ruptured, there is little else to do than to remove it. Having signed the required consent forms, I was wheeled into surgery. The surgery lasted for about 3–4 hours, and when I woke up in real pain for the first time in this ectopic pregnancy. A voice in a blur told me that I was being given more morphine. I went back into a daze.

The next few hours was a dichotomy between me being in a awake and in a daze. I saw the anxiety in my husband’s face when I was taken back to the ward. One of the dire failings of the NHS was the complete lack of empathy, there was no doctor available to tell my husband three little words — “it’s all okay”. He spoke to a few nurses who re-assured him it was fine, and it was quite late in the day so he had to leave.

The night after the surgery was a struggle — Me vs. Pain and the morphine won. I maxed out on the pain medication for the day, and felt it was not great to take any more. Besides that, the catheter had irritated my urethra and I was not comfortable peeing for about 24h. It was one of those nagging complications from the surgery, it resolved itself without an infection which I’m thankful for.

A laparoscopic salpingectomy meant that I had three small incisions — one on each side of my abdomen and one on my belly button. Each about 1cm long. The incisions didn’t look scary. The hardest part was trying to get out of bed without twisting my body. I was able to walk about 12hrs post surgery, and discharged 24hrs later. I bounced back to my usual self very quickly and walked more and more each day.

Step counts since surgery. Source — Fitbit data

I was discharged from hospital (16th of July) I struggled to do 213 steps. On day 11 post surgery I did 5321 steps and continuing to walk more each day.

The emotional side of an ectopic pregnancy

It’s hard to ignore the emotional element of an ectopic pregnancy. The hardest part was being faced with the fact that I had to undergo what was effectively an induced miscarriage with medication. I still struggle with the word ‘baby’ but I know that it was one, and the location of the pregnancy endangered my life. Like most women who went through a miscarriage, a question that I struggle more is ‘why?’, although if there was a suitable explanation it would still not be okay.

Some women rush to get pregnant again, and some choose not to. Due to the methotrexate that I’ve been exposed to, I have opted to wait for 6 months before we try again. I’m a 32 year old career women and it’s hard for me to be faced with a door slammed shut in my face and told I can’t go there for another 6 months. I have to tell myself to stop looking for solutions and gaps that I can leverage, and teach myself to sit back and wait for the door to open. Friends and family have been of enormous support through this period, however I have felt alone in my fears.

And there is always an uncertainly of whether I can conceive again, and the journey that it will take me when I do. I’ve found the information on https://www.ectopic.org.uk/patients/trying-to-conceive/ extremely helpful. The odds are that I still have a 70% chance of having a normal pregnancy after an ectopic.

The entire experience made me understand the fragility of life and the gave me a reason to think of a legacy. Children are some people’s legacy, whilst some other people leave their legacy in the form of organisations, charities, books or anything that has an impact that balances human fragility. I hope that my journey gives you a glimpse of the human side of dealing with an ectopic pregnancy, helps you along the way if you have or know someone who has experienced this.