Ectopic pregnancy support thread

(862 Posts)
tasmaniandevilchaser Sun 18-Mar-12 18:15:29

Hi everyone, this is a place for anyone who's had an ectopic pregnancy - whether you want to moan, cry, fret or just have a chat with other people who understand. I know there's lots of other good websites on ectopic pregnancies but after hijackingchatting with sunshine on another thread, I thought I'd start one here.

Well I'll get the ball rolling with my story - after a MMC in November (found out at the 12 wk scan that the baby had died at 10 wks) I was just getting myself sorted, having counselling, when I had the ectopic. I know I am lucky in that I have a lovely DD. Having had a normal pregnancy, I knew from the beginning this one was not good and as soon as I got a BFP I was down at the hospital.

After 10 days of mental torture, waiting around, scans, rescans, blood tests, it got too late for the methotrexate (they finally saw the ectopic in a scan on a Friday early evening and the methotrexate wasn't in stock hmm)

I finally had the surgery to remove one tube on the Tuesday. This was the end of February, at first I wasn't sure how I would cope, but I am just plodding on. I know I am lucky that it didn't rupture, but honestly I can't think of having an ectopic as being lucky. Especially after a MMC sad.

Anyway, come join me if you want to share your story, I have wine, brew and thanks

drmalpani Sun 28-Dec-14 19:49:34

A ruptured ectopic can be a major disaster - especially because this is a preventable tragedy.

This is why we created HCG Expert, a free website at www.hcgexpert.in.

Sadly, it’s very easy to miss an ectopic. Patients with an ectopic may not have any symptoms or signs until they rupture. Even worse, the commonest symptoms of an ectopic – pain and bleeding during pregnancy - are very nonspecific. These occur in healthy pregnancies and during miscarriages as well – both of which are much commoner than an ectopic. This is why, even if you suspect something is wrong, your doctor may dismiss your complaints as being of no importance. However, if the doctor misses the right diagnosis and the ectopic ruptures, then you will need emergency surgery to remove the tube. Not only is this expensive, it can also be life-threatening; and can also reduce your fertility even further.

While there are standard medical protocols for making the diagnosis of an ectopic early, these work well in text books. In real life, the eye only sees what the mind knows, and if your doctor doesn't think of the possibility, it’s easy for him to miss the diagnosis.

This is partly because the diagnostic protocol needs the doctor to interpret a combination of both HCG blood test results as well as vaginal ultrasound scanning reports. Sadly, the sonographer doing the scan may not think of the possibility of an ectopic; or may not have good quality equipment; or may do an abdominal scan, instead of a vaginal scan. Because the gynecologist is dependent upon the skill of the sonographer, if you are unlucky and the ultrasound specialist is not good, you are in deep trouble.

Sometimes gynecologists themselves are not really sure how to interpret the hCG levels in combination with the scan results . This is why they sometimes order a vaginal ultrasound scan too early ( for example, when the HCG level is less than 1000 mIU/ml, and misdiagnose an early intrauterine pregnancy as an ectopic because the sonographer cannot see the sac inside the uterus).

Conversely, an ectopic pregnancy is misdiagnosed as being an intrauterine pregnancy ( for example, the doctor may be fooled by a ultrasound report which mis-interprets a pseudogestational sac as being an intrauterine sac), something which can potentially have catastrophic consequences.

Also, many doctors are still unaware of the concept of the discriminatory HCG zone. Today, modern guidelines say that if the HCG level is more than 1000 mIU/ml and the sonographer cannot see a sac inside the uterine cavity, this means the diagnosis is ectopic pregnancy, until proven otherwise. However, doctors who do not understand this concept believe that the fact that no sac is seen in the fallopian tube on the scan means the patient does not have an ectopic pregnancy. This is a false and dangerous assumption, because they then continue to monitor the pregnancy. They allow the ectopic to grow and it can finally rupture. A ruptured ectopic can be a life-threatening complication.

The biggest tragedy is the fact that if the diagnosis had been made in a timely fashion, it's easy to treat the ectopic pregnancy with medical treatment - a simple injection of methotrexate can kill it when it is diagnosed early!

The problem is compounded by the fact that serial scans and blood tests need to be done in order to make the diagnosis early, and you may not report for followup testing, because you do not understand the need for doing multiple tests.

In order to overcome this problem , we've created www.hcgexpert.in. This allows you to enter your hCG data as well as your scan results, and the website uses an intelligent algorithm , which helps suggest the right diagnosis . You can then discuss the possibility of your having an ectopic pregnancy more intelligently with your doctor !

HCG Expert reassures you when your pregnancy is progressing well; and provides alerts when it is not. It does not bypass or overrule your doctor – it simply suggests when you need to seek medical attention from your doctor. This helps to reduce false alarms; and also improves patient compliance.

Please check out www.hcgexpert.in , so you can track and monitor your pregnancy. This is a free service.

Our hope is that HCG Expert will allow patients and their doctors to make an early diagnosis of an ectopic, so that it can be treated medically , without risking any damage to the fallopian tube , or the possibility of a catastrophic rupture , which can be potentially life-threatening.

Caitmous Mon 22-Dec-14 00:13:14

Bumping for BlueSkyGirl thanks

jodiburak Sun 30-Nov-14 02:36:09

thank you terryNo3 the link worked.
and thank you Lovemylittlebear

Lovemylittlebear Sat 29-Nov-14 07:53:50

Sorry to see you on here. Fingers crossed it works for you. Things do start to get a bit easier over time xxx

TerrysNo3 Fri 28-Nov-14 23:56:17
TerrysNo3 Fri 28-Nov-14 23:55:45

hi Jodi so sorry to see you on here sad I can't give you any advice as I had the surgery and I don't think this thread is very active so whilst it's good for some support I would suggest you go onto the Ectopic Pregnancy Trust website as they have a chat forum but they also have volunteers who man the forum so you usually get a good response

[[ http://www.ectopic.org.uk/talk/index.php?sid=2e3f4c0c43f6a3e0b9b12c5c4278d3d0 Here it is]]

I hope the methotrexate works and that you recover well, take care of yourself. thanks

jodiburak Fri 28-Nov-14 01:01:10

thank you Bakingtins,
I found out 2 days ago i have an ectopic pregnancy. i went for an ultrasound due to bleeding. The baby is half in my uterus horn and half in a fallopian tube. I got a dose of methotrexate to help me pass the pregnancy as i did not want surgery. I am 8 weeks along and the baby heart stopped beating yesterday before the injection. I have had a very sad week and now i am almost numb. I have not passed any tissue yet and am wondering what to expect? Also has anyone else had the methotrexate injection at 8 weeks gestation with an ectopic pregnancy...did it work? or did you need surgery at a later date? Help me understand what is happening or going to happen. please and thank you.

bakingtins Thu 27-Nov-14 23:02:04

Bumping for jodi.

Lovemylittlebear Sat 08-Nov-14 18:27:50

Thanks caitmous smile I'm in Wales and don't know of any services. I'm paying privately ATM for counselling and everything else which we can't afford to be honest. Hope everyone else is doing well xx

Caitmous Sat 08-Nov-14 11:22:19

Also, I had six months worth of free therapy from a pregnancy counselling charity. They are London-based. Let me know if you are and I'll DM you the details. Really helped.

Caitmous Sat 08-Nov-14 11:19:57

A good friend of mine had acupuncture for her fertility issues. She said she wasn't sure it helped in the end (she ended up conceiving through ivf) but got a lot from the holistic approach it took. She formed a close rapport with her acupuncturist and they spent time talking through a wide range of aspects of her life.

I think anything that feels right must be right. Go for it.

Lovemylittlebear Sat 08-Nov-14 10:32:54

I'm ok thanks smile coming to terms with it again. My best friend got pregnant at the same time so that's a bit hard as I'm happy for her but I am a bit jealous. My partner is reasonable lol...not overly conscientious but he is helping me through it with his optimism and sense of humour. I'm going to give homeopathy a go - I don't know if that's a bit wacky for me but I'm willing to try anything ATM. Does anyone else have any experience of homeopathy or accupuncture helping? Thanks xx

Caitmous Thu 06-Nov-14 20:34:14

Just caught up with the posts. I'm so sorry love. Really upset for you. How are you today? I hope you've got lots of real life love and care xx

Thanks for post mbd. I love hearing these positive outcomes, gives me hope.

Lovemylittlebear Wed 05-Nov-14 14:01:59

Thanks mbd for your lovely post.

Tranquility - feeling pretty negative about it all atm. I don't know what I'm doing wrong sad hope you are ok xxx

Tranquilitybaby Wed 05-Nov-14 09:52:44

How are you love?

TerrysNo3 Wed 05-Nov-14 08:24:55

mdb thanks for sharing your story, it sounds like you went through a horrid experience but it's great to know that even after all that you gave an amazing happy ending smile

MBDBBB Wed 05-Nov-14 06:36:40

Hello ladies. I just came across this thread and I felt I wanted to share my story with you, hopefully to give you some hope, and offer my support to those of you who are going through this.

I had my son with no issues in 2010. In 2011 we decided to start trying again. I quickly fell pregnant but very early on experienced some light pinkish bleeding. I had no pain but just this strange bleeding. I went into the EPU at the hospital and tests showed that my HCG levels were pretty high but there was no baby in the uterus. Initially they couldn't see anything in my tube either but an internal scan showed up the ectopic. Because my HCG levels were so high they said surgery was the safest option and they removed my right tube. Fortunately my left looked healthy.

I recovered well and we decided to try again late in 2011. I expected it to take ages with one tube down but again I fell pregnant quickly. I had a lot of pain from the start this time but no bleeding and although I was pretty sure something was going on the pg test was negative. The pain I had was on the right side where my tube was removed and the doctors were pretty dismissive. I had a lot of deferred pain under my ribs which I now know was due to bleeding.

I was at work when I suddenly had a huge pain in my right side. Somehow (very stupidly) I drove myself to a&e where I was left sitting for an hour until I begged to be sent straight to gynaecology. They were pretty dubious and dismissive. While they were spending a lot of time sorting out a scan I keeled over and passed out on their floor. Needless to say they then took me seriously and rushed me into surgery. Apparently I had had another ectopic in the same side as before and it had managed to implant itself into the little stump of what was left of my tube, which is pretty rare. I had also lost about 3 litres of blood internally and had I not got myself to hospital it could have been a whole different outcome.

I found the second ectopic much harder to recover from physically and emotionally. Thankfully my left tube remained unscathed though and I was assured I could still conceive. I felt doubtful, but thankful for my beautiful boy I already had.

In 2012 I conceived again and I was petrified. I had a lot of pain on my right side but this time the doctors were much more vigilant and I had an early scan at 7 weeks which confirmed the pregnancy was in the right place and I could even see a heartbeat. My pregnancy went smoothly and I now have a 21 month old beautiful girl.

I still experience pain when I ovulate on my right side and it is a reminder to me of what has gone before and also how lucky I am.

I know not every story ends as well as mine but I thought at one stage that there was no light at the end of the tunnel but it turned out there was.

To all those going through a hard time, I send lots of love and prayers. Know you are not alone in your experiences and there is always hope xxx

Lovemylittlebear Mon 03-Nov-14 08:31:46

Thank you - I shall ask for an hsg test. I hope its a MC too. Either way it looks to be sorting itself out, but I would have liked to have known if the fertilised egg made its way down to may uterus or not or if it got stuck in my tube again. It was right sided pain and cramping I was having (same feeling as last time) but my HCG dropped quickly by over double in 48 hours, so I don't know if that is more indicative of a MC or not? either way the Dr said there was no way to know if it was a misscarriage because it was tubal or a normal MC. They said I need to have three failed pregnancies before they will assess me.

I hope your next scan goes really well smile Thanks for the advices

Tranquilitybaby Sun 02-Nov-14 18:01:53

Although neither is nice I hope for your sake that it's a mc rather than ectopic. I'm so sorry. You can ask for a hsg test to check if your tubes are clear. X

Lovemylittlebear Sun 02-Nov-14 15:23:52

Sorry guys I know I'm hogging this thread. I had it confirmed I am miscarrying. They are unsure if it's tubal or not but pregnancy on it's way out. Does anyone have any advice on what I should do in terms of assessment? Thanks xx

Lovemylittlebear Sat 01-Nov-14 22:34:10

The same amount as when I had the ectopic last time and the blood looks similar too. Had nightmares about it and it's come true again! Does anyone know what happens next and whether we would get any further assessment with the nhs to see if my tubes are faulty or if I have problems with my hormone levels or anything? Xx

Tranquilitybaby Sat 01-Nov-14 20:09:51

Oh no :0( very much? I hope despite that, things might still be ok x

Stress can't cause that so don't worry x

Lovemylittlebear Sat 01-Nov-14 07:38:34

My mother was trying to help and said it's probably because I'm so stressed all the time sad great - so I've caused this then. Wow feeling negative lol. Thanks for all the nice comments x

Lovemylittlebear Sat 01-Nov-14 06:51:46

Starting bleeding this morning so it's not good news sad I've literally had enough x

Tranquilitybaby Fri 31-Oct-14 23:52:56

Fingers crossed it's more than doubled love thinking of you x

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