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I wanted to share my story for the sake of anyone else out there who has been or will go through what I have been through, purely so you know you aren't alone...
On the 5th of September 2019 I had emergency surgery to remove a Tubal Stump Ectopic IVF Pregnancy...
To give a bit of background, my husband and I have been married for 13 years (we got married at 21) and have been trying to conceive for 10 years. After 2 years of trying I had surgery for what was thought to be a large cyst but turned out to be a large hydrosalpinx (a blocked, fluid filled Fallopian tube) on my left side. The surgeon didn’t remove it because I hadn’t consented before hand, and when I woke up he wasn’t very helpful at all, said the other tube although damaged might still work (despite my abdomen being full of adhesions) and told us to keep trying for another year or so and see what happens. With hindsight we should have switched doctors immediately but we were young and took his word for it.
The reason for the adhesions was because my appendix has burst when I was a child and the surgery and infection had caused a lot of damage and scarring. I had no idea at the time…
We actually tried for over 2 years after that without success and I went back to the doctors because I was in pain from the hydrosalpinx. Fast forward another 18 months or so (NHS waiting lists!!) and I had surgery to remove hydrosalpinx. The other tube was investigated and I was told it was blocked/damaged and IVF was our only hope for having children.
A year later in 2016 we began IVF on the NHS and were delighted to have 8 embryos frozen. We had two attempts that year and both failed. After the 2nd failed transfer I became terribly depressed. I think the stress of all the previous years of trying finally caught up with me. I became very unwell with stress and this delayed things a bit. Later in 2017 we tried again, lost one embryo due to it not thawing well, had another transferred but it didn’t work either. I had also developed a large ovarian cyst and my other tube had began to occasionally fill with fluid so I was sent for more tests. I was still really suffering with stress and depression during all of this. Its a bit of a blur time line wise but we had a fourth embryo transfer in early 2018 which also failed.
At this point it was decided that due to the cyst and tube I should have another surgery. My 3rd (4th if you include my appendix!). So in January of this year I had the operation to remove the cyst and to disconnect the remaining Fallopian tube from my womb just incase the intermittent presence of fluid in the tube was contributing to our lack of success.
During the lead up to that op and after it I did alot of work mentally to become as well as I could and to recover from my stress and depression. I was seeing a therapist every week and made so much progress. Finally in July of this year, we embarked on our 5th IVF embryo transfer.
I was on a slightly different drug combination, I had had the surgery that had gone well, I went entirely caffeine free and I was in the best mental health I had ever been on our whole journey. We endured the 2 week wait and to our astonishment got our long awaited BFP! It was like a miracle and were over the moon. We contacted our IVF clinic and they booked a 7 week viability scan on the 4th September.
It took forever to arrive and we were so nervous and excited. I had had a very small amount of spotting which I had reported but the clinic weren’t too worried… I had prepared myself for what I thought was the “worst” - a missed miscarriage which is common in IVF, but nothing could have prepared us for what happened next.
The IVF nurse was very quiet as she scanned me and said she needed to get the doctor… he came in and took over and asked if I had had any pain. I said “a little, but I always have some pain thanks to the adhesions in my pelvis”… He turned the screen to me and showed me my womb, thickened as you would expect in pregnancy, but empty. He moved the scan over and revealed a little embryo in a gestational sac with a little heart beating away. He said “I’m really sorry but your pregnancy is outside of your womb”. I said “are you telling me its Ectopic?” He said “yes..” I said “How can I have an ectopic pregnancy?! I don’t have any tubes?!” He said “I think its in the stump of your left Fallopian tube…”
The next few hours were a total blur. I was rushed to hospital, bloods taken, hooked up with a cannula, obs taken every half hour, everyone waiting incase my tube ruptured. I was on the list as an emergency, but didn’t actually have the surgery until the following day because I hadn’t ruptured and there were other more important patients to deal with first.
The surgery took 3 1/2 hours but was successful. I had to consent to a hysterectomy before hand incase the pregnancy was in the “cornea” part of my tube (where it connects to the womb). It wasn’t thankfully but if it had been it would have been very dangerous to my life to try and remove it so a hysterectomy might have been necessary.
Its been a week and a half since that awful, awful day. Im home, recovering but still in the very early part of processing what has happened to us. My IVF Dr said the chances of it happening were 1 in 1000s. Ive learned since that ectopics do happen in IVF, there are lots of theories as to why but no one knows for sure. But to have a tubal stump ectopic is INCREDIBLY RARE. We have been so unlucky. Of all the places for that little embryo to settle… it just feels so cruel.
Safe to say we are both feeling very traumatised. I know we will be ok emotionally eventually but it feels such a long way off. It has made the prospect of pregnancy feel very dangerous. It used to be our life goal and now it feels so risky.
We have 2 embryos left which we are of course thankful for and also the prospect of another round of IVF. Its hard to imagine taking that though if im honest. I don’t know how much longer I can do this for. 10 years of trying, 4 laparoscopic surgeries, 4 failed IVF transfers, 1 BFP ending in a horrific ectopic nightmare. Its alot to take.
I know our circumstances are rare and the likelihood of someone reading this having gone through the exact same is impossible but I just wanted to write it out incase anyone comes across this site looking for empathy over a tubal stump ectopic in particular, and an IVF one at that. I dont have any answers as to why this happens, but if you’re reading this and have suffered similar I just want to say I’m so sorry, you didn’t deserve it and I feel your pain.
Be so gentle with yourself and get help to work through the trauma. Im so thankful I was having therapy before this happened. If I hadn’t I really think it would have pushed me over the edge. Im seeing my therapist again this week and know working through it all with her will be so helpful and I will recover and I will rebuild myself eventually. My husband is also having therapy. I just need time and I just need to practice kindness and patience with myself. Treat myself like I would a friend who is grieving.
I hope you can recover too and have hope for the future, even when it is so so hard x
I am so sorry to hear of your ectopic pregnancy 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 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, 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.
We will be here for you for as long as you need,
Sending much love and warm hugs,
The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
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Further information is available at ectopic.org.uk
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I just wanted to reach out because I too have had a stump tubal ectopic pregnancy.
My left tube was removed in July last year due to my first ectopic pregnancy. We got pregnant again in April and i had a bit of spotting but no pain! I had all the symptoms of a pregnancy - morning sickness etc. I went for the early scan they couldn’t find the sac. I went for bloods my hcg was doubling and my womb was nice and thick like it would be if the baby had been there! The hospital classed it as a pul but the consultant said he was sure it’s in the right place because my womb lining was thick and he searched my right tube and ovaries and couldn’t find anything. I went for two further scans before they found the baby. The consultant said it’s not in the right place it’s in the left side. I was like I don’t have a left tube! She initially thought it was a corneal pregnancy and so they didn’t want to operate and offered me mthx when my hcg was 8500! Anyway fast forward four days of living life on the edge I ruptured and ended up refusing surgery as I didn’t want to lose my womb! The consultant on duty said it wasn’t in my womb but in my stump and as such it would be very rare for her to have to perform a hysterectomy. I went for surgery and I lost 3 litres of blood and was kept sedated in icu over night. I was told there is a 0.4% chance of anyone having an ectopic in the stump! So we are very rare! Like you I’m glad it wasn’t in the womb and in the stump!!
If you need to talk do let me know! I hope you’re recovering from the surgery and feeling better!
Bhakti- Thank you so much for reaching out! Although our circumstances are so different, it means loads to connect with someone who has experienced a tubal stump ectopic in particular. Im so glad you didn't lose your womb either. Its such a scary prospect isn't it. I couldn't believe it when the surgeon told me there was a 50/50 chance. It would have been such a sad ending to our journey. Makes me shudder to think of it.
How are you doing these days? What are you plans for trying again? Its terrifying isn't it! Can I ask how old you are? Im 34 and im starting to really feel it fertility wise. Ive had it drilled into me by IVF drs that your fertility really decreases after 35. I was so happy to finally get pregnant this side of 35, I felt like I had beat the game! I know I still have time and lots of potential I just feel so exhausted with it all. Hope you're doing well and you've been able to gather hope and determination for the future. x
I’m doing a lot better. To be honest, last years ectopic took me by surprise (as I’d never even heard of it). I really struggled to recover both emotionally and physically. I gave myself time before trying again. This time although I’m distraught I feel I was more mentally prepared for the worst and although this time I was opened up fully for surgery as opposed to a keyhole surgery I recovered quicker. I don’t know why or how. I guess it shows the strength of the mind maybe. My worst fear was telling my Boss at work and having to take more time off (seeing as though it hadn’t even been a year since the last time). I somehow felt stupid for allowing it to happen to me. Though I know no one wants this! My boss is my friend as well so I’m lucky that she was very understanding. How are you doing?
I’m 32 years old. I have an ivf meeting next month though I’m not sure I want to go down that route yet. I’d rather try one more time naturally before going through that. In my head the worst has happened and I’m totally ready if it were to happen again. The surgeons both said my right tube looks healthy and open for business. It’s just not been used yet! We’ve been lucky in many respects that we’ve managed to get pregnant very quickly each time. I don’t know what the next time we try will bring but I’m just trying to do everything right so that I have no regrets later. I think I may be ready to start trying again next month but I’m taking each day as it comes because I have to remind myself that I’ve gone through 2 pretty big surgeries in the last 12 months and my body does need time even though I’m yearning for a child.
Everyone is different and everyone has their time for when they fall pregnant and have kids and you’re still young! People have kids so much later now I wouldn’t worry about that!
Bhakti - how are you doing these days? im currently in my 2ww after finally being able to face trying again. This is our 6th IVF embryo transfer...
It happened on Wednesday so im 4dp5dt which is like being 9dpo sort of! Ive got twinges in my left side where the ectopic was before and im really hoping its psychosomatic! I do have a cyst there still so it could be that too. Anything other than a repeat of September!
Test day is the 25th and im so nervous. On the one hand I would LOVE to be pregnant again but on the other it is utterly terrifying.
Really trying not to worry but its so hard. Pregnancy just feels so dangerous now. Hope youre well x
I’m well thanks. I’m trying again too. No success so far. We’ve been trying for 2 months and it’s not catching. It’s worrying me in a way because last two times I got pregnant very easily. I know I ovulate on my left side so the chances of it getting caught by the right tube are slim and I haven’t given it enough time.
I’m glad you’re well. Hopefully this one sticks and in the right place! I’ve seen a lot of posts saying people feel twinges so hopefully it’s nothing to worry about. Let me know how you get on!
I am so sorry to hear what you have been through. I can only imagine the pain you have felt over the years. My fingers are crossed that your results on the 25th come back all good and everything is well.
I too am having pains on my left side, I am getting my first blood test on the 29th. I am so worried that my egg has decided to nest somewhere other than where it suppose to I had an ectopic pregnancy in November 19' which resulted in both tubes being removed. I have learnt that anything is possible throughout this journey.
Please keep us updated with your results on the 25th, all the best.
It is a strange time in the world but hopefully you get the best outcome and you can we take a little video of the little one to show your husband!
So sorry to hear you have had such an awful run I am impressed you were so proactive in asking for help with the mental work too. It must be exhausting.
I ended up here looking for answers/similar cases/solidarity too, and am somewhat comforted by the fact that none of us are actually the only ones in the world to have had these types of experiences, and we are likely all feeling similarly miserable. I have nowhere near the sheer amount of trauma that you have been through (I can't even imagine ten years of the highs and lows that you have had), but wanted to share a few commonalities.
Dec 2017- first pregnancy, very exciting! I began to bleed lightly, and didn't think much of it until my best friend (a midwife) drilled in to me how serious it might be, so I was on the look out for pain. When it showed up I went straight to the hospital. Scans showed it was a tubal ectopic and my left tube was removed. My husband was actually away at the time and it was a couple of days before I could contact him to talk through the surgery/methotrexate decision, but we eventually made contact and went with surgery. He made it to the hospital the morning of my surgery, so that was a relief. Our wedding was four weeks away, so that served as a distraction of sorts.
14 weeks following the surgery- fell pregnant again. Unbelievably grateful to have a healthy and straightforward pregnancy that resulted in the most beautiful and health bundle of little baby girl. She was born Dec 2018.
Conceived what we were hoping would be our second in Dec 2019, and it felt like perfect timing. Given my history I was on top of it and went straight in for bloods and scans (I had only just stopped breastfeeding and my periods were irregular, so I wasn't too sure on the dates, though I had been recording them religiously). There was about 10 days of emotional speculation, peppered with doctors, radiographers, and pathologists. I am in the country and drive around and visit farmers for work, sometimes over an hour out of town, so I had to tell my boss I had to stay in the office until I knew what was going on. He was great about it.
I hadn't had any bleeding but began to feel a dull ache at what turned out to be about the six week mark, and off we went again to the hospital. They couldn't find anything in the uterus, but couldn't find anything anywhere else either. HCG was high enough that methotrexate probably wouldn't work, and it would very likely rupture in the meantime. So surgery it was, but it was exploratory in that they had to look around and try and find it. They suspected it was on the outside of the uterus, so I had to sign the paperwork saying that anything up to and including my uterus would be removed, depending on the need. Worst case scenario was the pregnancy was on the outside of the uterus and they would have to cut it away, then if they couldn't stop the bleeding (as it's more or less a flat surface compared to a tube), they would have to remove the uterus. Very scary, as other users have said. My poor husband had to drive home with our one year old thinking that it might just be the two of them. Not likely, but possible.
A few hours before I was going to surgery, it ruptured. I was already on the surgical ward and by the time I was taken down to the theatre I had already lost 1L of blood. Bhakti, I can't imagine the loss of 3L of blood! Must have been a long recovery.
Turns out my remaining tube had picked up the egg, deposited it in the correct spot, and then the egg had squirmed back into the stump of the one that was removed. So I'm left with one functioning tube and a serious revision of my plans for having a large family, but with a healthy daughter, so at least we have her.
That was 13 weeks ago now, and we were advised that we could try again as soon as the HCG was down to 0. That was confirmed about six weeks ago, so have been trying since then.
I'd love to hear how you are all going. Are you still pregnant Sweetandsimple? How are you going Surviving21?
I am still "Pregnant" but in limbo at the moment. This week I had a 6 week scan at the IVF clinic (although by my calculations it was 6 +3 but they insisted 6 weeks...) and thankfully the pregnancy is in my womb, they could see the gestational sac and the "baby" but they couldn't see the heartbeat.
They were very reassuring and said this early scan was simply to check the location given what happened last time and that we had achieved a good outcome because my womb looks great and everything that should be there is present - I just have to go back in a week to check for the heartbeat. They tried to reassure me 6 weeks was early for a heartbeat and told me not to lose hope but honestly my brain sort of fogged over. I didnt take in alot of what they were saying to me and now with hind site I wish I had asked certain questions.
She measured my gestational sac but didn't tell me how big it was, and she pointed to the white blob inside and said "this is probably baby" but never mentioned the yolk sack or how long the baby was. Im just annoyed with myself for not asking.
They didn't seem too worried (just going by their body language) but its so hard not to freak out. I was really really low the day of the scan and yesterday - cried on and off all day. Its so so hard to not expect the worst. I dont have many pregnancy symptoms so thats making it harder for me to believe. I only really have sensitive boobs on and off, mild cramping on and off and a bit of fatigue.
Next scan is on the 15th of April... so scared. Its also getting close to what would have been my due date from the ectopic pregnancy - April 21st, so the stakes are high right now. All of this wrapped up in this global health crisis! its just alot to take! I will report back after my next scan.
Dont get me wrong, I am super grateful that its not ectopic again, its just hard to hope and trust I can go the distance after so much failure x
It’s coming up to a year now since my last ectopic and I don’t know why (maybe as I have so much free time with lockdown) but it’s really affecting me this time.
Pammy I’m so sorry you’ve been through this too! It’s horrible. I hope you’re doing much better now.
The person who scanned me was introduced as a doctor but ive never seen her before. The IVF clinic has been stripped right down thanks to Covid-19 and is actually completely shutting as of tomorrow. All staff bar one nurse have been redeployed throughout the rest of the hospital. This doctor was (and I know this sounds judgey) really old and dithery. I think she may have been a retired gynaecologist who has come back to the NHS to help with everything (alot of retired nurses and doctors have come back to help here in the uk).
She barely knew how to use the machine. She even scanned my tummy first which you just dont do at 7 weeks. obviously she couldn't see a thing so switched to an internal scan and seemed to struggle. She kept asking the nurse how to do this and that and it didn't exactly fill me with confidence. I had to wear a face mask during the scan too which just made the whole thing even worse.
We have booked a private scan for tomorrow just to try and get a bit more peace of mind. I know its unlikely that this private scan will make everything ok suddenly but at least the person using the machine will know what they are doing.
I cant lie- Im feeling really low and teary right now. I know I should be glad there was some semblance of a heartbeat but the measuring behind and a lack of "feeling pregnant" isnt filling me with confidence.
These are very testing times here and I know that a lot of doctors have come out of retirement and it appears you just had someone who perhaps wasn’t familiar with the more advanced scanning equipment. Hopefully when you go for your private scan you’ll get some more comfort. Good news is that your baby has a heartbeat! I know it’s hard but you have to keep positive. After all you’ve been through, you’re one step closer to meeting your little one!
Let me know how your scan goes! X
Firstly, sweetandsimple- how are you going? No wonder you're teary, that must be so hard. What an awful rollercoaster; not ectopic, but no heartbeat, heartbeat but a scan that has you worried.. where are you up to now? I feel awful for you.
I am familiar with that horrible limbo at the moment; I have had a positive pregnancy test in the last few days and now have to wait eight days until they'll be able to see something on a scan. I have not long ago spoken with the specialist and had hoped he would say that I could have a scan in four days' time, but no luck. I felt like crying when I put the phone down. It's going to be a long week.
Bhakti (SO sorry if I have that wrong, I can't go back to the chat page without losing my message), how are you going? I have been feeling the same in that I coped fairly well the first time round, and the second time it has been much harder.
And what strange times these are. It's not surprising that everyone is feeling more emotional.
Hope you're all well,
It's easier said than done, but try to be kind to yourself x
I’m ok thanks. Weird to think this time last year I was pregnant for the second time in the space of a year. Without really trying to get pregnant. Now I’m trying and it isn’t happening.
Although, I am late now for my period but I don’t “feel” pregnant in the same way I did before so it’s probably just late.
Congratulations on your positive test! Fingers crossed! Do let me know how it goes!
These are weird times - my husband did say perhaps we shouldn’t try until after the pandemic but the thing is - we actually don’t know how long it will take to conceive so we may as well keep trying and if it happens it happens. X
We decided to wait 2 weeks for another private scan to let the embryo hopefully keep growing and catch up. We were encouraged by the EPU scan and hoped it would carry on growing well and catch up even more.
I had that scan this morning and sadly the heartbeat had stopped and everything had begun collapsing and shrinking. The sonographer said it looked like it had stopped not long after the EPU scan. We are devastated.
Im going to have to call my midwife again tomorrow and tell her so she can cancel my scan for 12 weeks etc and also get some advice about miscarrying. Its a "missed miscarriage" at this stage because my body hasn't recognised it yet. Because of Covid-19 I think they will be less inclined to send me for a d&c immediately. Im assuming I'll be told to wait for it to hopefully happen naturally but that could take a few weeks. I feel like Ive had the full gamut of things that can go wrong now. Infertility, Ectopic and miscarriage. Its just so sad and I feel like I cant keep doing this to myself. Its been so tough without the support of our IVF clinic. It's made things so much worse.
We have one more embryo left that I feel we have a moral duty to use, but its very low grade and I feel like all hope of it working has gone. Not sure I can face another round of IVF to make more embryos. We have been trying to have a family for 10 1/2 years. Its too much. IVF has taken 4 of those years. Its all been so dragged out. Life just feels too short on one hand but we also really want kids.
I know we will get through the miscarriage. The ectopic was so traumatic and we survived that. I remember crying my eyes out the day after I came home from the hospital and thinking I cant imagine ever feeling happy or laughing again. I felt so low. But it does pass and it does get easier and you do feel happy again. So I know we can manage this. Its just so sad right now.