Detailed account of my story

Who's Who
1

Hi everyone,

I already told my story in a different post but I thought I would include more details as I have been looking for this from other posts. As this is very new to me still (I only found out yesterday that my pregnancy was ectopic), I can’t help but obsess on this online forum. Hence, you will probably see my username on almost every post on this forum for the next few days.

So the story begins…

10th March 2022: It was still a few days before I would have started by period but I was very eager to see if I might be pregnant. As it would have been my first time, I just couldn’t wait. My cheap pregnancy test showed a very faint second line but it was definitely there.

11th March 2022: I went and bought a digital pregnancy test to remove all ambiguity and got a ‘pregnant 1-2 week’. I was over the moon. I couldn’t believe how lucky I was. But on that same night, I started having a very dull pain on my left groin. I was aware of chemical pregnancy and ectopic pregnancy so I got worried. And I am a worrier anyway.

12th March 2022: I did another cheap pregnancy test and the line was more faint than the one before. I started getting worried about chemical pregnancy but tried not to over think it. I carried on with my day but by late afternoon, the left groin pain started again. Just to be on the same side, I took myself to A&E. In A&E, I was asked for another urine test. I told the doctor about my IBS and constant loose stool since the last 2 weeks (I had gone through something extremely stressful so I thought this loose stool was because of my IBS) as well as my positive pregnancy test and fainter and fainter second line. She did a physical and didn’t feel anything abnormal. My urine test came back ‘inconclusive’. So she decided to book me an Early Pregnancy clinic appointment.

14th March 2022: I had a scan and they didn’t see anything except for a small cyst on my left tube. I should have been about 3-4 weeks pregnant by that time. They also did a blood test which showed HCG 37.4 and Progesterone 71.9. My urine test was all the way positive. So the nurse told me not to worry as everything seemed in order. If I still had pain, it was probably my cyst and I should just take some paracetamol. She told me to come back on Wednesday for another blood test just to make sure again.

16th March 2022: I returned for another blood test. The pain had remained dull and on and off. It seemed to get worse when I started worrying about it so I just thought it’s just in my head. My result came back as HCG 37.4, the exact same result as Monday. The nurse was very confused. She even asked the lab to make sure they didn’t use the old blood sample which they didn’t. So I got worried. She tried to reassure me and told me to return for another scan and another blood test in 2 days time

18th March 2022: I returned for a third blood test and another scan with the gynaecologist. At that point, no new symptoms and no bleed or spotting. My blood result came back with HCG 39.0. My scan also showed the ectopic in my left tube. She could see a clear mess and whenever she’d poke at it, I could feel that exact pain I had been feeling. She asked me if I had any other risk factors to which I said no. She also asked me if I had fibroid to which I also said no. My period were always symptoms free more or less. So based on all the information, she said that I had an ectopic pregnancy in my left fallopian tube and that I had the option of either go for surgery that day or come back on Monday for another blood test and scan and decide if we could try expectant management as my HCG seem to be hovering around the high 30s. She refused to give me the Methotrexate as she wanted to see if my body could just clear this pregnancy naturally. I returned home in tears and this is where I am now. I just couldn’t understand it. The only symptoms I had was just stomach problems and a bit of pain. How did this lead to this outcome?

My HCG seems so low compared to others on this forum. I should now be 5 weeks and its is still in the late 30s. I am really hoping for expectant management but at the same time, I feel like that would just prolong my suffering. In a way, I feel that a surgery would bring me closure quicker but the risk is to lose my fallopian tube which I really don’t want to. However, the doctor did make a valid point. She did say that if my tube had a problem that is causing this, I would be better off without it as it could happen again in the same place.

While I wait for my next appointment, I am left ruminating on these feelings:

  • I am experiencing more pain in the abdomen but higher than where the pregnancy is. Is it my IBS? Is it the ectopic bursting? Should I call the doctor? But then I feel that they would just tell me to get surgery and I don’t want to. But if I wait, I might die for this. It is my life or my fallopian tube.

  • What does this mean for my future? Will I ever be able to conceive and have a normal pregnancy or is it over for me? How much time do I have left as I am already 36 years old?

  • I pity myself for having been so naive and told so many people that I was pregnant. I was also so angry that I had to tell my boss who also had to tell other people. The only reason I had to tell her was because on the day I had the positive test was the day my ward had a covid outbreak. I am a health professional and I work in very close contact with covid positive patients at times. So I had to make sure that if it was a viable pregnancy, I shield myself from any risk of infection. I felt forced to tell my boss and she had to tell her boss and other people. All in confidentiality but it is still more people than I wanted.

  • I feel like such an imposter. People think that I am pregnant but in the end, I will never get the joy of showing off my new baby.

  • Anger at the lack of information available. I wish there was more emphasis on the fact that you don’t have to have any of the risk factors to have an ectopic pregnancy. You could be perfectly healthy and still have one.

I feel so broken inside but I’ll try and stay strong. Sorry for the very long post. I’ll try to keep this one updated. I hope I am not annoying anyone for oversharing and posting on every post you can see!

Hope everyone is well!

2

Hi Lyn_K,

I am so sorry you have experienced this ectopic pregnancy and loss. These boards are filled with women and men who are bound by this unfortunate experience. Thank you for sharing your story with us. It will be a comfort to others who visit and who have gone through a similar journey.

I also found that writing in a journal did help to process the many elements. I found myself recalling elements of the hospital and recovery, and I found myself thinking about the family and friends who reached out with support. It helped me to get the words out of my head, and to eventually share with my partner and close friends.

We at the Trust believe that talking through what happened and your emotions can help the healing process. In addition, you can ask to see a GP at your practice and ask them to explore ways in which you can get help and this can include referrals for “talking therapies” or counselling. The charity, Mind, may also be of assistance. They have local centres and support groups and can offer services on a means-tested basis or sometimes free. You can find your local centre following this link if that may be useful too: http://www.mind.org.uk/information-support/local-minds/.

These boards were a great comfort following my ectopic pregnancies and we are here for you for as long as you need.

With good wishes,

Michele

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards

During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.

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

Take a look at our newsletters 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

3

Lyn_k

So sorry you are going through this,I had a ectopic on 11th March 2022,I didn’t even no I was pregnant till a few days before because I was getting pains,the fetus was rather large aswel when they removed it, i had to have my left tube removed, I’m trying to think positive and if I get pregnant again will be able to get early checks next time.it is truly heartbreaking ,I hope they can save your tube ,thinking of you.

4

Thank you Michele and Ann1981,

I am sorry for your loss.

This week was tough, very tough. I had good days and bad days. Today is not a good one and that is probably why I am back on this forum, trying to find some comfort.

I had an overnight stay in hospital on the 19th March 2022 due to pain in my lower abdomen and spotting. Nothing had ruptured and there was no internal bleeding. They wanted to keep me for the night just to make sure they could monitor me closely.

I returned on the 21st March 2022 for another scan and bloods. My HCG had reached 19 from 32 (taken during the weekend). But the mass was still there. The doctor still wanted me to go for an exploratory laparoscopy with the plan to remove the tube if the ectopic is confirmed and my right tube was healthy. That was based on my admission for abdominal pain. I refused which I felt upset my doctor. She kept pushing for surgery, saying that it was the only way to minimise my risk of repeated ectopic as my left tube has now been damaged so keeping it would be pointless. But then, I didn’t understand why the evidence shows that regardless of the treatment (expectant, medical or surgery), your chances of a recurrent ectopic remains 10%. I didn’t understand why she said that the only way to reduce that risk was to remove my tube and reduce my fertility. And my HCG had gone down by 40% which is a lot more than the expected 15% to demonstrate successful treatment. It didn’t make sense to me and I was angry that she pushed for surgery despite my wish to preserve my tube.

As a result, I left completely broken and unsure. And despite abdominal pain, I refused to return to hospital until my next appointment. I was scared they would wheel me into theatre against my will, with the excuse that they would operate in the patient’s best interest as I lost the capacity to make decisions. I was so scared that I stayed with the pain and informed my partner to only call the ambulance if I passed out. I was so angry on top of trying to grieve the loss.

I am trying to hard to remain positive and not stress about it. But it’s really hard.

Sorry for these long posts.

5

Hi Lyn_K,

I’m so sorry to hear you are doing through this difficult situation. As I’m not medically qualified, I can not comment on your specific situation. I would encourage you to keep monitoring your symptoms and asking these questions from your doctor.

I do not want to worry you, but as you are following expectant management, please do continue to monitor your symptoms closely. It will not only be through passing-out. As your hcg levels are still not at nonpregnant level, under 5mIU/mL, there is unfortunately still a chance of rupture. The symptoms of a deteriorating ectopic pregnancy, which include worsening or progressively increasing pain; vaginal bleeding; shortness of breath; feeling faint; and pain in the tip of the shoulder among others, may become noticeable. If you suffer any of these symptoms you will need to be reassessed. Your hospital would give you a number to contact for health advice if you feel that anything is changing, or you will have been told to report to the Accident and Emergency Department (A&E). If you have not been told what to do and need to speak to someone ring the hospital department which is treating you or the NHS 111 Service by dialling 111.

In regards to your future fertility, when a person has only one fallopian tube they are still able to get pregnant from an egg in the opposite ovary as an egg from one ovary can travel down the tube on the other side. Conservative estimates suggest that an egg produced on the tubeless side manages to descend the remaining tube around 15 to 20% of the time. This means that rather than your fertility being halved it has been affected by around 30% or, looking at it another way, it means we have around a 70% opportunity of conception with each menstrual (period) cycle.

We naturally assume that we will ovulate from alternative ovaries each month (left ovary, right ovary, left, right etc.) This is not true and varies from woman to woman. Some women will ovulate from the same side each month with occasional ovulation from the other side, while others will ovulate randomly from side to side.

Both ovaries compete each month to produce an egg and usually, the one that is ‘pulling ahead in the race’ continues while the other one gives up (but not always – sometimes women will ovulate from both ovaries in one cycle or twice from one ovary but these are rare events that explain how we get non-identical twins naturally). It depends on which ovary contains the egg that is at the right stage of development at the point in time where the woman is due to ovulate and is nothing to do with a set pattern.

The side we ovulate from does not strictly matter as an egg from one ovary can travel down the tube on the other side.

I know this can be a confusing time. Please know that we are here for you as long as you need. I encourage you to write your questions down and take them to your doctor’s at your next appointment.

With good wishes,

Michele

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards

During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.

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

Take a look at our newsletters 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

Hello. I don’t see any more posts from you,so not sure how you progressed. I am surprised from what I read on this forum,that people are hesitant to get operated even when its in their best interest. I do feel slight loss since having my tube removed,but I cant imagine having to stress for several days waiting whether the extopic will burst or not. I am from Czech republic and here the doctors almost dont use methotrexate,most ectopics are scheduled for laparoscopy, as the scarred tube really is an unnecesarry risk and often develops adhesions. I just feel like this is a good example of how sometimes not having a choice can be a good think.

7

Dear MayaDeGaia,

I am so sorry to hear of your ectopic pregnancy and loss. It is interesting to hear how other countries manage ectopic pregnancies. Of course, as we are a UK based charity, I can only comment on what is offered here.

Sadly further ectopic pregnancy can still occur even with tube removal. Methotrexate is offered as it is not as invasive as surgery and women are closely monitored throughout treatment. Studies also suggest the chances of successful pregnancy are about same irrespective of type of treatment - expectant management or medical management or surgery.

I hope this helps,

Wishing you a smooth recovery and do continue to lean on us for as long as you need,

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards

During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.

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

Take a look at our newsletters 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

8

Hi MayaDeGaia,

Sorry for the lack of updates on this thread. I did write an ‘epilogue’ to my story in another thread.

My ectopic pregnancy was resolved with expectant management. I returned to EPU for a 6 weeks follow up and my tube is now clear from any mass but I still have to wait for my second cycle before I can try again.

I get what you mean, about not having a choice sometimes being better. I am often very indecisive so in front of too many options, I just paralyse! I did start second guessing my decision during my recovery. However, this forum really helped me feel more comfortable with my choice because I really was not ready for surgery. For some people, it may be the best decision and I am glad you are happy with your decision as it does give you a more definitive closure. But I didn’t feel ready to put my body through the trauma of surgery and its potential complications when my body was already starting to show signs of resolving the pregnancy by itself. Obviously, in different circumstances like a rupture, I would probably have made a different decision but with an HCG of 19, it didn’t make sense to me.

And as Karen said (thank you Karen), there is this belief that removing a tube will further reduce the risk of a second ectopic. However, the evidence so far has not been able to support that. And I did hear of stories from women who ended up having a second ectopic in their remaining tube or even in the stump of their removed tube.

I am grateful I was given the choice considering where I was at at the time. I know not every women had that luxury and I look up to them for their bravery and strength.

I hope you are well and on the road to recovery. xxx