Our Little Jelly Bean

HeatherB · 14 August 2017 17:27

Hi all.

I’m feeling like posting my experience on here is going to help me get things off my chest to people who have been in a similar situation and hopefully it’ll help me move forward.

On 9th July this year, I found out I was pregnant. By Thursday that week, I was in hospital having scans due to bleeding. I wasn’t in pain, just numb and devastated at the loss of our first baby - we had been trying to conceive for 8 months. Once at the hospital, I knew something wasn’t right as during the scan, more and more doctors kept appearing by my bed. They were asking questions like do I have pain in my shoulders etc, filling forms out and asking for my consent to operate - I had no idea what for as nobody had yet told me what the issue was. I never ended up having surgery, but I was kept in hospital for monitoring and after a couple of days they decided i was stable to go home and off i was sent after 2 days of non-stop crying and not a great deal was explained to me.

I had to visit the hospital then every 48 hours, it was a difficult and emotional time, some days i felt fine, then guilty for feeling fine, other days i woke up and it didn’t feel possible to face the world. I would visit the hospital and have my tests and hope that they would say ‘your bodies back to normal now’ but things only seemed to get worse. Eventually, the docs said i needed methotrexate injection. I was in quite a lot of pain after this, however, on Thursday 10th August, i finally got the call i had wanted - i was now testing negative for pregnancy hormone.

I’m grateful for not having the surgery, and that i am still healthy and alive. However i now feel so many mixed emotions. I miss the baby that i never even met, i miss even knowing it was still in my tube, even though i knew it could not survive. I feel bitter that this happened to me. Every day feels like a battle with my emotions. I cant think about anything else. I’m constantly thinking about what could have been.

This week i would have been 12 weeks, i should be having my first scan, beaming with joy. But now all i have to show for everything i went through, is that positive pregnancy test i took back in July, and the wrist band they put on me in hospital. It feels unfair that i have nothing else to show for my short pregnancy, and I’m scared for me and my husband to try again, despite wanting a baby so desperately.

Many people do not treat ectopics as they would a miscarriage. Rather than saying “sorry for your loss”, they say “sorry to hear that you have been unwell”. I wish more people could understand that ectopic is still the loss of a baby, a very loved and very much wanted baby, that just because it is a serious medical condition, or a pregnancy that was ‘never viable in the first place’, it does not mean that i am not equally devastated to have lost my baby.

We named it ‘Our little Jelly Bean’ and we will love it forever.

Offering strength and prayers to all other Mums who never met their babies xx

EPT_Host_20 · 14 August 2017 19:50

Dear HeatherB,

I am so sorry to hear of your ectopic pregnancy and loss, it is such an overwhelming experience.

I experienced my ectopic pregnancy 7years ago and too found the whole experience very medicalised. I had methotraxate and was discharged without so much as a ‘sorry for your loss’ and it saddens me to hear this continues.

I also found that whilst well meaning, friends and family didn’t truly understand how I felt and I felt very isolated. Like you, I turned to the Trust and here I found support, information and comfort by knowing I wasn’t the only one feeling this way.

When we experience ectopic pregnancy we are suddenly faced with a life threatening emergency and it’s treatment, reduction in fertility, concerns about the future and the loss of our babies. Experiencing any one of these is an ordeal, putting them together is immense and your feelings are completely normal.

It is completely normal to feel anxious about the future. We generally feel a mix of emotions from wanting to try again to being petrified of what may lie ahead.

Importantly early scans avail. As soon as you know you are pregnant, contact your local EPU to inform them and book in for an early scan at around six weeks. Remind them of your previous ectopic pregnancy. This self refer route is the best route in our view. Hopefully you will have some comfort to know you are under the radar of medical professionals right away.

The chances of a further ectopic after a first in UK is 10%. So that’s 90% chance of the embryo being in right place next time. It may be comforting to know that 65% of women are successfully pregnant within 18 months of experiencing an ectopic pregnancy and some studies suggest this rises to around 85% after two years.

Making the decision to begin trying to conceive is an emotional rollercoaster compounded by our sad loss. Again, you are not alone. We here emotional support whenever you need us. There is a specific TTC board you can look at too whenever feel ready.

Sending much love and warm hugs,

Karen x

If we have been able to help you, are you able to help us with a small donation or by volunteering?

Further information is available at www.ectopic.org.uk

Email us at ept@ectopic.org.uk.

Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).

Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team.

HeatherB · 15 August 2017 16:09

Hello Karen,

Thanks for your reply and for the information. I find comfort in knowing that other people feel similar to how i do, although sad to know that this happens to so many people - nobody deserves to feel this way

May i ask, from your experience, did you feel any pain after your hormone had reached 0? As mentioned, mine reached 0 last Thursday but today i have very minor pains in my left side. Could this be ovulation pains, or perhaps just tenderness as my body heals? Would you advise calling the EPU, or trust that my body would tell me if it were anything serious? As mentioned, the pain is only very minor, not strong enough that i need to take pain killers, but may just need a hot water bottle to get me through the rest of my day at work.

Thanks for any advice you can offer.

Heather x

EPT_Host_20 · 17 August 2017 15:46

Hi Heather,

Personally I found that my pains and bleeding worsened around 2weeks after the methotraxate injection, I continued to experience pain on and off for many months after. If the pain persists, I suggest keeping a pain diary noting when the pain appears, the intensity on a scale of 0-10 and anything that helps the pain eg resting, hot water bottle, paracetamol etc. Visiting your doctors with this information helps them to assess how best to manage your symptoms.

Experiencing some pain after an ectopic pregnancy is normal as your body has been through a great deal. The pain may be due to adhesions (scar tissue that binds two parts of the body together) which form and take some time to settle. Your body may be preparing to ovulate and many women experience ovulation pain when they did not before their ectopic pregnancy - including myself. You also may have a heightened perception because of the sad loss that you have had to go through. If you find you experience offensive smelling discharge or an increased temperature of more than 37°C or just want to be checked out to be on the safe side, it would be worth asking your doctors to run tests to check for infection.

It is very difficult to compare symptoms as we are all individual, our bodies respond differently to the drug and it depends on factors like how high levels reached and our unique physiology. If you are not able to control the pain with over the counter medication, please seek medical advice.

Sending much love,