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First ectopic and huge anxiety as was wrongly diagnosed

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Lauramay
Posts: 1
Joined: Sat Dec 14, 2019 10:56 pm

First ectopic and huge anxiety as was wrongly diagnosed

Post by Lauramay »

Hi,

I have had a very stressful month it all started just after I found out I was pregnant about 5 1/2 weeks I began to experience some light bleeding. Being my first pregnancy I worried and went to the EPU were they confirmed that this is normal and my cervix was closed which were all good signs. This light bleeding didn’t stop and every now and again I kept getting a twinge on my left side over the week. I called 111 to try and get some advice and they referred me back to EPU as they thought I was in early stages of miscarriage. Once there I was scanned and there was no sign of a sac or baby. I went back and forth for 2 weeks every other day getting my bloods which showed they were doubling at normal rate. I was finally then seen by a consultant at 7 1/2 weeks and was scanned and he believed that I had signs of a molar pregnancy so the next day I had to go down for the operation. All went fine however the surgeon came and saw me and said that what was removed was so so tiny that they were not sure if it was a molar. I then had to return two days later to have my bloods done to ensure they were going down. Much to my shock I received a phone call to say my bloods were still doubling and that I needed to be scanned first thing again in the morning. To my surprise they then discovered my ectopic on my left side and had to go down for surgery that day to have my left tube removed as I was near enough 9 weeks.

I have had to go through so much and it has been a lot to process especially having two operations in a matter of 3 days. I just don’t understand how it was missed and how I can be diagnosed so in accurately. This has had a massive impact on myself mentally processing it all.

Due to this experience I now have so many questions, fears and anxieties. I keeping questioning whether or not when I was 21 and unfortunately got chlamydia off a a cheating boyfriend of 5 years did that have an impact on this? Will I fall pregnant again naturally and will it be ok? Do I even want to try naturally?

I have such a fear of trying again naturally and am unsure if I would even be considered for IVF. It is causing me so much anxiety.

Has anyone had an experience like mine and feel the same way?

Blueberry_2019
Posts: 2
Joined: Sat Dec 14, 2019 3:48 am

Re: First ectopic and huge anxiety as was wrongly diagnosed

Post by Blueberry_2019 »

Hello LauraMay,

Sorry to hear about what you have been through.

I am going through a similar situation at the moment. I was referred for an early scan last Tuesday to “put my mind at rest” as I was anxious about spotting and found my pregnancy was ectopic and growing in my left tube.

I had my tube removed and I am wondering if the tube damage has been caused by a cheating partner giving me chlamydia in my early twenties.

I am feeling exactly the same as you lost, scared about the future and anxious and if you ever want to chat I am here.

Natalie xx

EPT Host 20
Posts: 1587
Joined: Thu May 31, 2012 9:58 pm

Re: First ectopic and huge anxiety as was wrongly diagnosed

Post by EPT Host 20 »

Dear Lauramay,
I am so sorry to hear of your ectopic pregnancy and loss. You have been through a huge amount in such a short space of time and it is very normal to feel overwhelmed. From your words, I can imagine how frightening the experience must have been and I am sorry you have had to go though this.

Ectopic pregnancy can be notoriously difficult to diagnose because it often presents with symptoms that can be suggestive of other, more usual, conditions such as gastroenteritis, miscarriage or even appendicitis. If scans are inconclusive, doctors would carry out a series of blood tests to check hCG levels to see if the numbers are rising as expected. However, in isolation, hCG tests only provide a part of the picture - declining levels indicate that a pregnancy has ended and will be miscarried. It can also possibly indicate an ectopic pregnancy that is "self-resolving". Also hCG levels rising by less than 66% over 48 hours means it is likely (but not certain) that it is ectopic. If levels rise normally, they suggest the pregnancy is implanted in the uterus. You may see from this that hCG levels only indicate certain possibilities and are not in themselves a definitive guide. Sadly I am not medically trained so cannot comment on your individual circumstances, however if you feel something was missed with your care, please speak to the Patient Advice Liaison Service (PALS) in your hospital who will be able to investigate this further for you.

There are a number of risk factors for ectopic pregnancy such as pelvic inflammatory diseases like chlamydia, however many women, do not have any risk factors and still sadly experience ectopic pregnancy. The difficulty is, many of us never know the exact cause. I know that when I had my ectopic pregnancy I also looked for a reason and almost automatically we tend to blame ourselves. From the bottom of my heart, there is nothing you could have done to prevent the ectopic pregnancy from happening. I cannot emphasise enough - you are not to blame.

It is natural to be worried after everything you have been through. Sadly even with IVF there is the risk of ectopic pregnancy but 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.
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.

It is 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. We never forget our babies, but we learn to accept what happened. It is a slow process that might be weeks or months ahead.
In time, we can get to a place where we feel comfortable trying again. When this is, is individual for each person. There is no timeframe for recovery, take each day as it comes. As a gentle reminder regarding conceiving again, we and many medical professionals advise waiting for two menstrual cycles. It is important to allow time for your body to recover and emotions to surface and be worked through. This is so that you have some comfort that your body is returning to its natural rhythm and you have a last menstrual period date from which to date a new pregnancy - key information in checking you are not suffering from an ectopic pregnancy in the future. The first bleed soon after surgery for ectopic pregnancy is not classed as a period as it is the body's response to falling hormone levels.

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.

Experiencing an ectopic pregnancy is a huge ordeal and you are in the early stages of recovery. Your body needs time to heal from your surgery which is in itself a gruelling task. You have also had to process the loss of your baby and been through an immense rollercoaster of emotions - all of this will take time to come to terms with.
You should take it very easily for about six weeks after surgery. Your body will be using its energies to heal internally. It is normal to feel physically and emotionally exhausted during this time and please do be kind to yourself. Recovery can take time and some days will be better than others, one day you maybe ok and the next you maybe in discomfort or more emotional. This is perfectly usual and the healing process will go back and forth in this way for however long you need. It is important to listen to your body's signals and pain and feeling tired are your body's signs to tell you to rest. We suggest keeping a healthy balanced diet, drinking lots of water and resting. Once your wounds have healed, very gentle exercise such as a short walk can help, but please do take this slowly.

We are here for you for as long as you need,
Sending much love and warm hugs,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811

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