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Second ectopic pregnancy- lucky or unlucky?!

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LMuz32
Posts: 15
Joined: Mon Oct 11, 2021 5:41 pm

Second ectopic pregnancy- lucky or unlucky?!

Post by LMuz32 »

I had an ectopic pregnancy in July which was treated with expectant management. My symptoms at that time were quite severe lower back/pelvis pain for 24 hours and then the feeling of a lump in my groin followed by bleeding. Luckily my body had started to break it down and hence the expectant management. This was a difficult time for me and I felt very angry (as I know a lot of people do) but after about 3 months I felt the cloud lift a little.

I then had a positive PT in December. I immediately contacted my GP and a scan was arranged at EPU for what should have been 6.5 weeks on dates- I had that on Tuesday. I went in feeling super positive. I didn’t have any of the “risk factors” for my last ectopic so I assumed it was just bad luck and was relatively sure this pregnancy would be successful and then I got the blow; Second suspected ectopic. How can life be this unfair?! I spent two days processing and wallowing. My HCG on Tuesday was just over 6000. I was advised to return on Thursday for repeat bloods and within 2 hours had a call to say they’d increased to over 7000 but nowhere near doubled so consultant wanted to see me. I was seen within half an hour of returning and the consultant rescanned me herself. She confirmed highly likely second ectopic in my tight Fallopian tube (again). I had zero symptoms and felt well in myself. The plan was for surgery the next day as it was the second in my right Fallopian tube there must be damage there.

Originally they were toying with letting my go home to sleep and attend early the next day but the ward sister said she’d prefer I was admitted overnight. Later that evening, another consultant came to see me and said he was glad I was in hospital as he was worried about the risk of rupture. I was on the emergency list for yesterday but was consented and prepped weds evening so I was taken down early. Turns out that I had ruptured (most likely yesterday morning) despite not having any pain at all. Surgery has gone well overall (laparoscopically) and my other Fallopian tube looks healthy. Frustratingly, the surgeon said that my “bad” tube wasn’t bad at all, no scarring or blockages and it’s basically been very unfortunate that I’ve had two consecutive ectopics in that tube. I’ve found this really frustrating.

However, I am choosing to look at the positives. If I hadn’t had my first ectopic, I wouldn’t have had the early scan and given I was symptomless I would have been walking round with a ruptured ectopic until I collapsed which could have been a very different story. My care has been fantastic, the staff have been very sympathetic and compassionate. My experience shows the importance of the NICE guidelines and for those not offered an early scan for future pregnancies, they should absolutely push for it.

I’m not sure what our journey will be moving forward. I’m reassured by the findings at surgery but mentally unsure if I can face the prospect of doing this all for a third time. I just wanted to say thank you to EPT for all the information available and this forum- it has been a big support both times.

EPT Host 20
Posts: 3155
Joined: Thu May 31, 2012 10:58 pm

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by EPT Host 20 »

Dear LMuz,
I am so sorry to hear of your ectopic pregnancies and losses, to experience one loss is difficult, to deal with multiple losses is heartbreaking and my heart truly goes out to you.

It is good news that your remaining tube looks healthy and as you say, ensure you have an early pregnancy scan with any subsequent pregnancy.

Above all be kind to yourself and allow time to grieve, to heal both physically and emotionally.
We will be here for you for as long as you need,
Sending much love,
Karen x

The Ectopic Pregnancy Trust
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Cammy
Posts: 2
Joined: Tue Mar 09, 2021 3:49 pm

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by Cammy »

Hi LMuz32,

Thank you for sharing your story, and for your positive reframe of what must still feel like a raw and difficult experience. I enjoyed reading your story as it really resonates with me.

I too have experienced two ectopic pregnancies. My first was last January 2021, an unexpected (but wanted) pregnancy. I had some complications as I developed an autoimmune disorder alongside the pregnancy and had a misdiagnosis of miscarriage for a while before being treated with methotrexate. It was an emotionally draining time and I didn’t much enjoy the methotrexate but it worked for me and me and my husband set about trying again around July time. I found out I was pregnant again on what would have been my due date in October 2021. I had talked myself into thinking i would never get pregnant again, I couldn’t believe it. However, I knew early on that things might not work out as my positive pregnancy tests were not progressing. Despite this I had no symptoms at all to indicate ectopic, and my blood results looked really promising.

At my second scan ( following an initial scan ending with a ‘pregnancy of unknown location’ diagnosis) it was confirmed to be another ectopic in a slightly different location on the same Fallopian tube. My initial ectopic had also left some tissue behind in the tube that hadn’t been cleared by the methotrexate. I was given a choice about my treatment options and I opted to have a laparoscopy and my right tube removed. I too was admitted to hospital for two nights before I ended up actually having surgery but I felt well within myself. I was very lucky to avoid the physical pain that can come alongside the emotional.

My surgery was successful and they couldn’t find any reason for the ectopics, but told me that there really was no more space for the ectopic to grow this time and that it was good I’d gone for surgery that day. My left tube looks healthy as far as they could tell. In my experience the certainty and closure provided through surgery had been much better for my mental health than the experience and impact on my body that I had with methotrexate, where I was sat in limbo and scared for many weeks with no answers about what might happen next or in the future. There isn’t always a way of knowing what the best treatment options are for us, I always thought surgery sounded like the worst option but for me the uncertainty that came with the methotrexate was worse.

I’ve taken the time I need away from my job to process the emotional impact of this and I feel ready to be back working. I strongly believe that knowledge is power and in the importance of having information in order to advocate for yourself. I understand the nhs system (my employer) and have been able to ask for a gynaecology referral for further exploration and assessment. Everyone has the right to ask for further assessment after two. Based on the outcome of this I will decide whether I would like to keep trying naturally or whether we need to start thinking about other alternative options.

Anyway I hope that someone will find my story reassuring or hopeful in some way. I was so worried and anxious about it happening for a second time that when it did happen I knew what I wanted and needed from the hospital and others, and this made the experience much more manageable for me. I don’t leave this experience feeling negative or angry any more, I feel hopeful and I look forward to seeing what comes next, even with roadblocks that might lie ahead. Despite everything that has happened I don’t regret my pregnancies, and I think it’s important to hold on to that.

LMuz32
Posts: 15
Joined: Mon Oct 11, 2021 5:41 pm

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by LMuz32 »

Dear Cammy

Thank you for your post. I am sorry to hear of your kisses. It is a very difficult time to go through but I find it reassuring to also hear your positive spin on things. This process we go through is not linear, there are certainly bumps in the road and I have the found the support on this forum very helpful. I really hope there is a happy outcome to your journey.

If you don’t mind me asking, have you had any follow up appointments/investigations as yet? The gynae reg told me that I would be sent an appointment as it is my second and I have received an appointment date for the end of February. I have mixed feelings about this; I know it will be a good opportunity to ask my questions and hopefully get some closure but I am also anxious of the outcome of this in terms of what it may mean for our future journey. I wondered what your experience has been? [or anyone else reading this?] x

roweh002
Posts: 7
Joined: Tue Jun 08, 2021 9:07 pm

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by roweh002 »

Hi just reading your story. I've had two ectopics slightly different situation, first one in March 2021 right ectopic and had to have surgery to remove my tube as it was too large, but thankfully hadn't ruptured. I too have no risk factors and was told my tube looked healthy and everything was normal following the surgery. I had a follow up consultation with the surgeon and he basically said it was pure bad luck and gave the green light to try again. We got pregnant very quickly all the numbers looked great but sadly another ectopic but caught at 4.5 weeks so I had two doses of methotrexate. Since then I have had a consultation with the original surgeon who basically told me my tubes aren't blocked and it was bad luck yet again. I did not agree with this so I pushed and ended up getting a HSG test done and my tube was clear, I also had bloods done to check these were all normal too and I had a consultation with the Infertility doctor too and basically she recommended trying again and if that ended up ectopic she would advise removing the tube and then straight referral for NHS IVF. I don't qualify for IVF at the moment despite two ectopics as you have to not be able to get pregnant. Hope that helps!

LMuz32
Posts: 15
Joined: Mon Oct 11, 2021 5:41 pm

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by LMuz32 »

Dear Roweh002. Thank you for your post and I am very sorry to hear your story and your losses. I must say that this is what I am afraid of, that they say there is no physiological explanation for my repeat ectopics and it’s safe to try again but then it happens for a third time. I am very lucky to already have a child & so once I have my appointment, my husband & I need to have a serious think about our next steps.

I hope your story has a happy ending.

Bekadeeboo123
Posts: 6
Joined: Sun Jul 26, 2020 12:02 am

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by Bekadeeboo123 »

Hi

I’m currently on the NHS waiting list for IVF due to ectopic which in both Fallopian tubes on the anniversary of first ectopic causing them both to be removed.. in July 2020 and July 2021. No reason for this... they would of looked at healthy Fallopian tube when taking the reptuted Fallopian tube but second time round a year on when removed second Fallopian tube they said it was twisted and blocked :(

My referral went in when second got removed 7 months ago. Still not heard back. There currently on June waiting list.

I’m just thankfully I’m okay and it will never happen again. The sadness and pain it caused myself and my husband.

2022 hopefully we will hear from IVF soon.

I havnt been on here for about 5 months but feel so much better as I just felt empty!

Sending you all love and hope

Lyn_K
Posts: 36
Joined: Fri Mar 18, 2022 12:48 pm

Re: Second ectopic pregnancy- lucky or unlucky?!

Post by Lyn_K »

Hi everyone,

Thank you so much for sharing all of your stories. I am deeply sorry for all your losses.

I am currently going through my first ectopic pregnancy. I too have none of the risk factors and for some reason, still ended up in that 1% of women. I only just found out yesterday and I am still trying to process the grief (still stuck at denial and anger stage). This forum has been such a great help for emotional help as well as informing me of all the possibilities after an ectopic. I was terrified of trying again as soon as this one clears. I am 36 so I feel that time is running out on me. But your stories have given me the courage to try again as soon as I can because despite the second ectopic, you guys were still able to look at it from a positive perspective. And that is very powerful in my eyes. I will aspire to have your courage and strength on the rest of my journey.

Thank you so much for being here to support us all!

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