The anxiety and uncertainty...

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1

Hi, I’m new here, and new to ectopic pregnancies. My husband and I have a difficult history though. I had a stillborn baby at 41 weeks 4.5 years ago, one which changed us, and which will always be a big part of our story. Then I had a miscarriage 6 months later, then a difficult pregnancy that resulted in my beautiful son. Hyperemesis in both term pregnancies.

Now we are back here after a long time of hesitating to try again, and after finally getting pregnant, I started bleeding and having cramps at 6 weeks. I knew something was off because it was fresh blood, no clots, a lot of pain, and very slow to progress - different from my previous miscarriage, which went very quickly. As our former doctors have all gone on to different places, we are left without contacts, and I could barely convince the hospital to admit me for a scan (my GP wouldn’t, though he took my hcg levels). On Sunday, they only found a tiny sac, and said this could still happen with an ectopic as it was very small for my stage. They did not find anything outside of my uterus. They told me it was most probably a miscarriage, but took my hcg levels and checked them again today. I have been in a state of extreme anxiety since - and it is bringing back a lot of trauma for me. I really hoped it would not be so difficult this time around.

My hcg levels have been 299, 317, 332 so far (taken every second day). The doctor called me today to tell me it is most probably an ectopic since the levels are rising, but that they will check my hcg again on Thursday, and do a scan. Then if they have not dropped, they will give me methotrexate. I am finding this all very anxiety inducing. I am still not convinced this is an ectopic, as they did not find anything outside of my uterus. But at the same time, I hate this watchful waiting - I have been in a state of panic for 4 days now, and would like some peace of mind that the worst is not going to happen.

I am wondering if any of you have had a similar experience with hcg levels/scans, and if you could share your stories? Also, how much did you bleed? Were there clots and tissue or just mostly fresh blood?

Also, for those of you who have taken methotrexate, what were your experiences? How horrible is it?

Thank you in advance.

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I had similar numbers but clinicians decided to wait for it to resolve on its own. The testing and false starts for methotrexate and surgery took its toll on ym mental health. But it did resolve on its own.

It’s not unusual to pass a decidual cast if it is ectopic. I passed 2 Triangular womb shaped pieces of tissue and assumed all was done.

I spotted and bled for 2 months. No massive bleeds, beside the tissue describe above but even that didn’t have much bleeding.

Hope you get a swift resolution xx

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Dear ik2019,

I am so sorry to hear of your previous losses, my heart truly goes out to you.

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. A positive identification of an implanted embryo on a scan is usually needed. This is possibly the reason why your doctors are waiting until a further appointment to carry out scans and tests.

Unfortunately there is no set pattern to ectopic pregnancy, which is why it can be notoriously difficult to diagnose. Personally, I had the occasional twinge in my side around 2 weeks before but as it was my 1st pregnancy and wasn’t bad, I thought it was implantation pain. I then had nothing until the day I was taken into hospital with severe pain and heavy bleeding. For me it was more dark than fresh blood. Other women have barely any signs at all.

I was treated with methotrexate too. It made me feel extremely tired for around 2 weeks. I hardly bled and only had a slight niggle of pain during the first week, then I started cramping and getting heavier bleeding the 2nd week. I’m afraid I cannot remember how long I bled for as this was 9 years ago now. I took two weeks off work, but wish I took longer to cope with the fatigue and emotional impact of baby loss. You will also require regular hospital visits for blood tests to ensure your hCG levels are declining.

Following methotrexate, I am afraid it is difficult to predict how long it will take for your hormone levels reach non-pregnant levels. 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. What I can say is that it can take a number of weeks and, while it can take some time, it is not as invasive a procedure as surgery. Also, 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).

We do have more information on methotrexate here https://ectopic.org.uk/patients/treatment/

It is good that your EPU are following up with further tests, having said this, I do think that if you are feeling pain which seems unusual and is concerning you and, in particular, if you experience any unusual bleeding or spotting, it is better to get checked out to be on the safe side. As pain is unique to each person and I have such limited information, it would be better to get professional medical assistance by someone who can examine you.

Sending much love and warm hugs,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

Further information is available at ectopic.org.uk

Email us: ept@ectopic.org.uk

We provide a call-back helpline service: 020 7733 2653

The latest EPT newsletter is out now! You can take a look at the Winter edition and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters

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

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Thank you both, for sharing your stories and for all the info. It does seem to be very individual, which is probably why it is so anxiety inducing - you just don’t know what to expect. I haven’t been able to sleep as I am constantly vigilant about pain and bleeding.

How did you cope during this period?

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Dear ik2019,

I hope things are a little smoother for you.

I just took one day at a time and tried to distract myself by going out for gentle walks. Do whatever you can to pass the time, but I know how frustrating it is.

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

Further information is available at ectopic.org.uk

Email us: ept@ectopic.org.uk

We provide a call-back helpline service: 020 7733 2653

The latest EPT newsletter is out now! You can take a look at the Winter edition and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters

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

6

Hey, I’m sorry you are going through this. It is truly awful and so depressing. I had severe abdominal pain in my left side when I went to the doctor to see what was wrong as I had an IUD . pregnancy was the last thing on my mind and it was not the plan. They told me that we had to treat with methotrexate to avoid my tube from rupturing. I had to go back for blood work to monitor my HCG levels but during this I was heartbroken and still am. Knowing that there is something inside you trying to live as you wait for it to die is the worst feeling I’ve have ever experienced. Than day 10 I got some mild cramping on that side and I didnt feel good about it so I went back to the hospital thinking that I was being oversensitive and here mytube had ruptured . I’m so lucky I went when I did as the bleeding was nicely concealed and hadn’t filled my stomach. I’m still left with misplaced feelings and being around children is almost unbearable. I don’t know how to heal from something like this, I don’t know if having a child would help or if that is not a healthy way to deal with this as I feel like I need to be quite sure as that is a big decision. I also haven’t been the same physically since the surgery as I still get weird twinges in my stomach and every months my body tricks itself into thinking I’m pregnant when I’m not. At this point I think it’s psychological but I’m getting an ultrasound to check for scar tissue and other issues as well with blood work. Not fun but talking about it helps for sure. I hope you can get the help you need. Lots of hugs

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Also about the bleeding, I had light spotting which was common with IUD so I thought nothing of it and didn’t know until I had pelvic pain when going to the bathroom or sitting down as well with a sharp pain in my left side. To the point where I couldn’t be in the car as every bump would send me into excruciating pain