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What to expect...

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Clarecuppycake
Posts: 1
Joined: Thu Feb 06, 2020 4:39 pm

What to expect...

Post by Clarecuppycake »

It's my first pregnancy and sadly it has turned out to be eptopic Iv really struggled to get my head round it all and feeling alot of anger and frustration with all the unknown things.
I was found to be eptopic and have just been monitored with bloods tests every few days to check my hcg levels are decreasing they originally started at 1000 and are now down to 92 four weeks later I have another blood test Monday but I have no idea what I should be expecting to happen to my physically...? I have no bleeding or pain so what happens now? The hospital staff haven't been great with given me many answers or advice so I would really appreciate anyone else's experience and what to expect now?
Thanks

EPT Host 22
Posts: 659
Joined: Fri Nov 20, 2015 10:26 am

Re: What to expect...

Post by EPT Host 22 »

Hi ClareCuppyCake,

I'm so sorry to hear you are experiencing an ectopic pregnancy and loss. This can leave us with many questions, and I will do my best to help answer your questions. Please take time reading my response and feel free to ask any further questions.

With treatment for ectopic pregnancy through expectant management, when the pregnancy is ended, the whole pregnancy sac including any cells that might have grown into a baby is usually reabsorbed by the body. This is normal and happens in many cases of miscarriage. This process can take weeks and sometimes months. In some cases, the Fallopian tube may remain blocked and take time to shrink, there is no time frame for how long this takes. Sometimes the tissue can separate and be passed through the vaginal bleeding that occurs.

The bleeding that follows an ectopic pregnancy can be very heavy and clotty and result in the passing of what we call a decidual cast. This decidual cast is the lining of the uterus when we are pregnant. The sudden drop in hormones can cause the material inside the uterus to be shed in layers and the material that is passed can be grey, pink or white as well as appear like a clot or dark or frank red blood. Women can often mistake it for the tissue of their baby which can cause worry but it is important to remember that it is a normal process for the uterus lining to be shed. This process involves vaginal bleeding - it can be clotty or like one of your usual periods and some women have bleeding/spotting for up to six weeks.

Many women experience changes to their menstrual cycles after an ectopic pregnancy and it can take some time to settle back into a rhythm that is more usual for you. Periods can be heavier or lighter or more painful than before - as we are so individual there isn't necessarily a set pattern. Doctors consider menstrual cycles of between 23-42 days to be within normal parameters and, if you find that you are not within these sorts of timeframes, it would be a good idea to speak to your doctors just to be on the safe side.

As a gentle reminder regarding conceiving again, we and many medical professionals advise waiting for two menstrual cycles once your hCG levels are back to pre-pregnancy levels. 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.

With regards to trying to conceive, the chances 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. In terms of chances of future successful pregnancies, studies do not show a significant difference between treatment routes, whether surgical, medical using methotrexate or expectant management (allowing time for the body to resolve the pregnancy itself).

Importantly early scans are available. 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-referral 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.

I know waiting for hCG levels can be an anxious time, and while I don't want to worry you, there remains a chance of rupture until you are at the non-pregnant levels (below 5mIU/ml). For these reasons, it is important to stay alert to any symptoms of pain, particularly abdominal or shoulder tip pain, or heavy bleeding. In these cases, you will want to be seen at the A&E.

These boards are a safe space for you, and we here for you for as long as you need.

With good wishes,


Michele

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Bodhi81
Posts: 3
Joined: Thu Feb 20, 2020 2:42 pm

Re: What to expect...

Post by Bodhi81 »

Hi Clarecuppycake
I’m going through something similar, my hcg started at 1150 after going to EPAU with bleeding, it had only dropped to 947 6 days later. I’m having to wait a week for repeat bloods as I had zero symptoms, however, yesterday afternoon and today I’ve had ‘niggles’ - the odd pang here and there, and achy shoulders - did you have anything similar? I’m not sure if I’m just imagining things or I’m just taking more notice, I’m not normally a worrier but this wait and see business is not sitting well with me (mines also PUL so not definite EP) x

lifeisnow
Posts: 8
Joined: Tue May 12, 2020 8:17 pm

Re: What to expect...

Post by lifeisnow »

Hello,

I'm new to this and just got diagnosed with ectopic pregnancy two days ago. I was in a state of shock, confusion and fear. Thanks to this forum that I feel I have a space to share my story and seek advice from people who have gone through the same confusion, pain and grieving.

It was my first pregnancy, after 8 months trying, my husband and I were over the moon when I got a positive test result. We wanted this baby for so long and were worried whether we had any infertility issues during the process, the test made both of us relieved. But how naive was I, I thought a positive test equaled a baby, no one told me pregnancy could be a journey.

5 weeks 5 days into the pregnancy, I woke up in blood. I rushed into the toilet to clean myself and a scary thought came to my mind: did I just have a miscarriage? My husband and I were both in shock, he tried to comfort me as much as he could, but we were both scared and saddened by the possibility.

We went to the hospital to check up. The nurse did a urine test and it was positive. Did a scan, but she couldn't see anything in my womb. She then arranged two blood tests, just to compare the HCG levels so that she can confirm a miscarriage.

Throughout the weekend, bleeding continued and I had some blood clots came through me, I thought it must be a miscarriage. My husband and I cried and grieved together, we came to terms of losing our baby this time and hoped I could recover speedily and we could try again.

On Monday, I did the second blood test, only for it to say that my HCG level has gone up rather than down. I was asked in to do another scan, which happened two days ago. The first scan again found nothing, the nurse was puzzled by the HCG test results and arranged a second scan with a different doctor to get a second opinion. Knowing all my stats and symptoms, this time, the doctor expanded the area search and found a little ball in my left tube.

As I haven't shown any pain or other symptoms, the doctor asked me to do a blood test again yesterday, for them to monitor hormone level changes closely, it came down from 1226 to 1184. The nurse asked me to go back tomorrow to do another blood test.

I trust the medical team, but also terrified with the possibility of tube rupture. Should I request medical treatment by injecting methotrexate instead of expectant management?

@bodhi81, would love to hear how your treatment went since your post.

I'm in a state of shock, confusion, fear and worry of the future. Would appreciate your advice and would love to hear your story if you had any similar experiences.

To the female love and power x

Bodhi81
Posts: 3
Joined: Thu Feb 20, 2020 2:42 pm

Re: What to expect...

Post by Bodhi81 »

Hi @lifeisnow

Mine wasn’t a definite ectopic so it is slightly different. My hcg levels dropped (however marginally) at every blood test so I was managed expectantly (which is what I wanted). They did offer methotrexate but I declined as I had no symptoms. All in all it took 5 weeks to get a negative pregnancy test, they stopped taking blood at about 200units which was about 3 weeks after initial bleed and asked me to do a home pregnancy test after 2 weeks. Symptom spotting for a rupture was hard going, every little niggle set me on edge but I didn’t want to wait the 3/4 months after methotrexate to try again. Nothing at all could be seen on my scans so I didn’t have any follow ups. We skipped the first cycle after and are trying again now.
It is hard going waiting for levels to drop but there’s also no guarantee Mx will work either, I can’t give you any medical advice but just have a think and if you feel you can do ‘wait and see’ or if you would prefer the piece of mind Mx can offer, then then the wait to try again.
Take care x

lifeisnow
Posts: 8
Joined: Tue May 12, 2020 8:17 pm

Re: What to expect...

Post by lifeisnow »

Hi @Bodhi81,

Thank you so much for sharing your experience. As your starting HCG level was close to mine, your story gave me hope and courage to continue this journey with so many unknowns. You are right that even with medical treatment, there is always a chance for tube rupture, which is my biggest fear at the moment.

Same as all you have described, I'm being ultra sensitive with every little pain and cramp I feel and it can trigger the worst fear in me. I even try not to sleep on my left side, just incase it'll add extra pressure to my already suffering left tube - I know there is no science backing it up, it just shows how paranoid I become. In the meantime, I also don't want to waste NHS's time and resource by calling them with my constant worry and fear, which I don't even know whether could be classified as pain or not.

I've done 3 blood tests since the diagnosis, my HCG has been dropping slowly and I'm anxiously waiting for my today's test result, which I hope continues the trend. I guess I'll just have to take each test as it comes and make decisions when I have to.

I know the experience and result might be different for different people, but I really appreciate you sharing your experience, which gave me peace and hope.

All my best wishes for your trying again, sending my love and positive vibes x

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