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Tubal Stump Ectopic IVF Pregnancy. Wanted to share my story.

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Tubal Stump Ectopic IVF Pregnancy. Wanted to share my story.

Postby sweetandsimple » Mon Sep 16, 2019 7:42 pm

Hi Everyone.

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
sweetandsimple
 
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Joined: Mon Sep 16, 2019 5:04 pm

Re: Tubal Stump Ectopic IVF Pregnancy. Wanted to share my st

Postby EPT Host 20 » Mon Sep 16, 2019 8:22 pm

Dear sweetandsimple,
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,
Karen x

The Ectopic Pregnancy Trust
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Re: Tubal Stump Ectopic IVF Pregnancy. Wanted to share my st

Postby Bhakti » Wed Sep 18, 2019 7:06 pm

Hi sweetandsimple

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
 
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Re: Tubal Stump Ectopic IVF Pregnancy. Wanted to share my st

Postby sweetandsimple » Fri Sep 20, 2019 6:51 pm

Karen- Thank you for your reply. I really am anxious about the future now- I hope I can get in a better state of mind before we go back to IVF clinic in the new year... So glad to have found this website.

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
sweetandsimple
 
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Re: Tubal Stump Ectopic IVF Pregnancy. Wanted to share my st

Postby Bhakti » Sun Sep 22, 2019 12:34 pm

Hiya

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
 
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Joined: Thu Oct 11, 2018 7:08 pm


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