A little wobble after expectant management

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Hi everyone,

This one will be another long one. Sorry…

I thought I was coming out of my black hole a couple of days ago. I didn’t feel so guilty when I smiled or laughed or joked with my partner. I didn’t feel the need to cry every time I thought of something sad. I even started feeling hopeful again. But yesterday, I hit another low because I started doubting my decision on how I managed my ectopic pregnancy.

When it was diagnosed, my doctor was very insistent that I get my left fallopian tube removed despite my HCG being no more than 40 at its peak. And I reflected on that a lot and decided to continue with expectant management against medical advice. I recently found a discharge letter from my doctor stating that she advised me to go for surgery due to the pain I experienced on a weekend (leading to an overnight stay at the hospital) and anxiety (I cried every time I saw the doctor). When we spoke, her argument for surgery was that my tube has now been damaged and the risk of having another ectopic in that tube will increase. Consequently, removing it out of the equation would remove that increased risk, reduce my anxiety and only slightly affect my fertility.

I often make decisions based on factual information and research as well as my own feelings about it. Unfortunately, there hasn’t been a lot of studies done around tubal ectopic pregnancies and their impact on the functioning/patency of the affected tube post treatment. The literature reviews that I found were weak, stating that the limited evidence is contradictory. Nevertheless, the risk of a recurrent ectopic for any treatment remains at around 10%.

I am part of several ectopic support facebook page. I regularly go on there just to feel that I am not alone. Yesterday, someone made a comment that salpingectomy is the only way to go if you want to minimise your risk of an ectopic as per her doctor. That is what my doctor said and that is what a lot of women were told by their doctors. From what I read, most women had the salpingectomy. That’s what triggered my increased anxiety.

I tried to reason and justify my choice of expectant management as I was starting to regret not choosing elective surgery. I tried to find success stories from women who had expectant management but only found a couple on the internet. I read more studies but the quality of their findings were moderate at best. I tried to make sense of the statistics again.

  • If 10% of women who had expectant management post ectopic had another ectopic (probably in their affected tube due to scar tissue?), it wouldn’t be statistically realistic to believe that all 90% of the other women conceived from their unaffected tube.

  • I know the risk increases after an ectopic, probably due to the damage. But I had none of the risk factors and I still managed to have an ectopic pregnancy in a healthy tube. I read that more than 50% who have an ectopic had none of the risk factors. So why should I worry about the damage?

  • And wouldn’t the tubal surgery give me another risk factor to worry about on top of my history of ectopic pregnancy?

  • I read the story of 2 women who were managed by expectant management and methotrexate. They sadly had another ectopic in the same tube and had it surgically removed. When the doctors looked a the tube post op to determine the cause, they didn’t see anything wrong with the tubes - no scar tissue, no deformity, nothing - despite having had an ectopic in there previously. Bad luck seem to have been the cause.

  • I read stories of women who found out that both their tubes were in poor condition due to being twisted and having a history of ectopic managed medically or with conservative surgery. They still managed to conceive an intrauterine pregnancy.

  • Considering my HCG never went above 40, I am hoping that the ectopic remained really small and the damage wasn’t big enough to have an impact on the functioning of the cilla or the patency of the tube.

  • I realise that the doctor wasn’t trying to push something on me that I didn’t want. She probably just wanted to help me reduce my anxiety by removing the tube so I don’t have to worry about it as the impact on fertility is only of 30%. Maybe the fact that I have both my tubes offset the increased risk compared to salpingectomy, hence my risk remains at 10% and not more.

All these thoughts have been playing on loop in my head for the last 2 days. And it is driving me mad! Although I have now reached 0 HCG, I still feel pinching/weird sensations on my left side which has become a constant reminder of my unfortunate luck. I know that the mass is probably still there and will be there for a while until it is fully reabsorbed (or not). I am trying really hard to find something else to do other than read about this. But it’s so hard…

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Dear Lyn,

Although other forums can be supportive, I would just be wary of the content posted and if they are reviewed by moderators. Here at the Trust, we provide evidence based information to the very best of our abilities. As you mention, there is little evidence surrounding treatments and outcomes for ectopic pregnancy, which can make providing information difficult.

We do not provide individualised medical advice as we do not have access to peoples medical records and we are not medically trained. When people post about their personal experiences and choices you will also not know their medical history and specific details about their ectopic pregnancy which may have led the medical team advising certain treatment options for them. This is why it is very important not to compare yourself or the treatment you received to other women you may speak to or read about on forums.

You chose the treatment that was best for you at the time, and although it’s natural to look back and consider if we made correct decisions, I feel you made the decision that suited you best so try not to worry. Sadly experiencing one ectopic pregnancy increases our risk of a further and the treatment option does not change this. Although not common, we have heard from women who had surgery to remove the tube and then experience an ectopic pregnancy in the stump where the tube was removed and women who do not have tubes and have IVF can still sadly experience ectopic pregnancy.

Having said this, you are absolutely right in saying that the chance of a further ectopic after a first in the UK is 10%. So that’s a 90% chance of the embryo being in the right place next time. While generally it is possible to conceive after an ectopic pregnancy, the amount of time it takes varies from couple to couple. Factors include age, general health, reproductive health and how often you have sex among other things. 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.

As you have stated in terms of chances of future successful pregnancies, studies do not show a significant difference between treatment rates whether surgical, medical using methotrexate or expectant management.

Making the decision to begin trying to conceive is an emotional rollercoaster compounded by your sad loss. Again, you are not alone. We are here for emotional support whenever you need us there is also a specific preparing for your next pregnancy board you can look at whenever you feel ready.

Sending much love,

Karen x