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Disappointed with Ectopic care

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clazdana
Posts: 2
Joined: Sat Oct 20, 2012 8:16 pm

Disappointed with Ectopic care

Post by clazdana »

Hello, hope this is ok to post. My daughter, 25, suffered an ectopic last week, at 6 weeks. I suspected she was having one due to her pregnancy tests not getting darker, her dark bleeding and slight one sided pain. I insisted she go to her doctors, as following her birth I went on to have 3 ectopics, so am very familiar with symptoms. She went straight away to the Walk in Centre, but the doctor told her it wasn't ectopic. He said she wasn't experiencing bad enough pain for it to be so. He said 'I have seen many ectopics and this I assure you isnt one'. He diagnosed threatened miscarriage. She phoned me and I told her to get up to the hospital, I was fuming as the worst pain i ever had with my ectopic was when the tube ruptured and I certainly didn't want her to go through that.
She went up to the hospital who wouldn't scan her because again they didn't think it was an ectopic as she 'wasn't in enough pain.' She demanded a scan the following day, and they took bloods that night and she went home. Her blood pressure and pulse were a bit high they said but sent her home anyway. Next day they scanned her and there was the ectopic left tube and they gave her the shot of MTX.
What concerns me is that back when i had mine there was very little literature on ectopics, no facebook support groups, hardly any info, apart from the Miscarriage association's wonderful helpline, on which i volunteered for some time. Nowadays however awareness is very high, even soaps have had ectopic story-lines, I honestly though doctors were more clued up, more aware these days, that a woman presenting with a pregnancy and one sided pains, severe or not, should be treated as a suspected ectopic.
If it wasn't for me insisting that she persevere to get a scan and bloods, and her trusting me to know what i was on about she might have accepted the first diagnosis and not gone to the hospital, and suffered a rupture with all the medical emergency that surrounds one. I was left disappointed with her care, and stunned that with some doctors at least, the awareness just isn't there, despite the brilliant work people like the EPT do.

daisyblack543
Posts: 148
Joined: Sat Mar 14, 2015 7:32 am

Re: Disappointed with Ectopic care

Post by daisyblack543 »

Hi I had such a similar situation I had a ectopic last year I was bleeding and wasn't in any pain my doctor was concerned it was ectopic so he sent me to epu where they refused to do a scan even tho when she pressed on my belly I had bad left pain a few days later my pain was excruciating I was rushed in hospital on New Year's Eve and had the worst doctor ever who didn't even think I was pregnant and just trying to tell me I had period pains they couldn't scan me for another 2 days they kept trying to send me home but I refused as my pain was so bad the nurses would laugh at me and tell me it ain't ectopic as I would of been in much more pain then I was and wouldn't give me any painkillers and kept telling me to ride the pain out! At the scan a few days later as I thought my tube had burst and I had loads of blood clots floating around I got rushed straight down to theatre I'm glad your daughter got seen in time before it went further sorry if my post don't make much sense but I agree with you doctors should be a lot more clued up about it and scans should be avalible 24/7 for people who complain of bleeding and pain
Hope your daughter is ok and sorry for her loss X

SharonB222
Posts: 9
Joined: Tue Nov 10, 2015 3:01 am

Re: Disappointed with Ectopic care

Post by SharonB222 »

I hear you. With my eps I had no pain at all (until rupture with the 1st). My 1st ep, 1st doctor did delayed diagnosis and then I was called "the ectopic" at the office - further indicated their lack of experience. I can find online decision charts that show mine was mismanaged (sent home at 6w with empty uterus and low but normally doubling hCG over 1500), then given MTX ... twice with hCG nearing 10,000 (I had requested surgery but was convinced otherwise to my detriment). My 2nd ep, my 2nd doctor was very experienced and treated at increasing hCG 300 (7w, known dates). That took a while to resolve, but was otherwise uneventful after the MTX shot. I am glad you were the patient advocate for your daughter. I didn't have one the 1st time and was my own advocate the 2nd time. I am sorry for the loss.

clazdana
Posts: 2
Joined: Sat Oct 20, 2012 8:16 pm

Re: Disappointed with Ectopic care

Post by clazdana »

I just somehow thought medical awareness had advanced since 1993 and it angers me that sometimes it doesn't seem so. I had an ultrasound with my 2nd ectopic, then they shut the department leaving me on a dark corridor with no-one about, bleeding and in pain. Had to shout for help. Told my daughter things were better now, but her experience doesn't seem so. Is that what doctors judge ectopics by? The pain? Thats daft, much more awareness needed at grass roots xx

SharonB222
Posts: 9
Joined: Tue Nov 10, 2015 3:01 am

Re: Disappointed with Ectopic care

Post by SharonB222 »

Thankfully with MTX many women today are helped without surgery or trauma, but obviously the "industry" has a ways to go, for timely diagnosis and treatment. For me, even the emergency room treatment was delayed because the regular doctor claimed "separation pain" common with MTX, thankfully the emergency room doctor ignored that after my vitals dropped the 1st time and had surgery and lab prep for blood transfusion and operation for when my vitals dropped again. Saved my life.

When did your trauma mostly fade away? In time or with some milestone? Does your daughter's experience bring back a bit of yours or not? My recent loss is fresh, but even so the emotional recovery takes longer than I expect or want. I'm three months out from my last blood draw but still here, not moving on yet... in time I suppose.

Hugs for your family.

Amelie
Posts: 4
Joined: Sat Feb 13, 2016 8:56 pm

Re: Disappointed with Ectopic care

Post by Amelie »

Hello,
Thanks for sharing this story. I had an ectopic last September (firs pregnancy). I was about 7 weeks when I went to the doctor with my partner to have the first check up and register at the hospital. I told the doctor that I had spotting (at the time I had very little pain which I assumed was normal for pregnancy). He dismissed the spotting as normal pregnancy thing and said he would organise for me to have a scane at 12 weeks (!) apparently the norm here... A couple days later, the pain increased, I went to hospital again, but was put to a midwife, she said the same thing your daughter was told: I was not in agony so I was fine and she said no to scanning me. A week later a fainted, my partner barely got me to hospital, I got operated on within an hour and barely survived with internal bleeding.
So you see there is no more awareness - I personally only read quickly on it (I did not know how common it is, and did not realise its gravity and potential death if untreated - I know now!).
I have told myself that now I am stronger and my head and heart have cleared up that I will help with raising awareness. Do it too, your daughter would have had much more trauma (like me) or could have died if you had not already been aware (I had noone like that around me). May be your local newspaper would be interested in your story, and raising awareness? Local radio? Put something on facebook etc.
As you, I am shocked at how little ecotpic seems to be known, in particular in the medical/midwives sphere (I heard it once in a series on TV I think and it only said she lost the baby - nothing about life-threatening or anything). Every woman, especially if she already knows she is pregnant, presenting with bleeding and pain, particular one-sided should be scanned to rule out ectopic. Point blank. This is life saving and should be a common practice everywhere. Ambulance staff also needs to know about ectopic.
Thanks for sharing, and let's raise awarness! As you said in this age of communication, it's incredible. Even pregnancy help books barely mention ectopic, if at all!

M117
Posts: 8
Joined: Sun Mar 20, 2016 10:42 pm

Re: Disappointed with Ectopic care

Post by M117 »

That sounds like a terrible experience, particularly with pain. I had no pain at all, just bright red bleeding and an ectopic confirmed at scan at epu two days later. I was 10 weeks.....

EPT Host 22
Posts: 659
Joined: Fri Nov 20, 2015 10:26 am

Re: Disappointed with Ectopic care

Post by EPT Host 22 »

Hi clazdana,

I am so sorry to hear of your and your daughter's ectopic pregnancies and losses. While many health care professionals provide excellent levels of care, sadly we do sometimes come across instances where the care is not as we would expect. I'm sorry that you, your daughter and your family have had to go through this. You are absolutely right that sometimes the awareness isn't there and we do strive to address this. Thank you very much for your kind words of support and you have our word that we will continue to work hard to bring attention to the condition among the public and healthcare professionals alike.

In terms of your daughter's circumstances, you may be aware that you can raise your thoughts via the Patient Advice and Liaison Service or PALS. You can find your local PALS here and it may be an avenue which can help:
http://www.nhs.uk/Service-Search/Patien ... Search/363

Please do feel free to continue to use your boards to express yourself and you could also let your daughter know if that may help. We will support you both during this difficult time as best we can.

With good wishes,

Michele

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Celine
Posts: 6
Joined: Mon Apr 25, 2016 9:34 am

Re: Disappointed with Ectopic care

Post by Celine »

You are so right to post this! One of the reasons I am still here, still sitting on the sofa crying after 9 months, is the terrible terrible medical care we received. As in your case, I 'knew' it was an ectopic pregnancy. I went to my GP and told her. She ignored me and sent me away. Two days later I returned, she told me again I was wrong (despite obvious pains over my left ovary) but grudgingly booked me in for scan, making it very clear that she was only doing it to 'keep me quiet' because I was being unreasonable. The scan was booked for saturday.

By friday night, I was still bleeding and essentially had a 'miscarriage'. I was very ill with it and I knew what it was as a friend had described her own to me. As the night went on my partner, increasingly afraid, called NHS 24 for advice. They told us to get to A&E. I asked them to send an ambulance as my husband couldn't leave the kids on their own in the house. They asked, could I not get a taxi? At this point, I could barely stand. And that is typical of the ridiculous way we were treated.

Finally my husband managed to find a neighbour awake at 4am to come stay with our (his) kids so we could drive to the hospital. On getting there, I told everyone who would listen that the pregnancy was ectopic. It is a very clear feeling. Yet again I was ignored and they discharged be and told me to ignore the bleeding.

Luckily for me, the scan was the next morning, at which point they 'informed' me that the pregnancy was ectopic. By the time I was operated on, apparently I was in some danger. The operation was never properly explained to me. My husband was told while I was in surgery that I may die and then left alone in the corridor. The care I received in the hospital was appalling. They would not allow my husband to come and see me even though I was in an empty ward all night alone. They made him sit alone in the waiting room downstairs while I lay alone upstairs. I can't believe how bad they were. We were discharged with no help or telephone numbers or advice.

After a few weeks I went back to my GP, told them about the rage and depression, and asked for counselling. I was told there is no provision and there's nothing they can offer me.

People are far too quick to write off my anger as being because the baby died. I am not angry about that. I am sad, but it's just an unlucky thing you know? But the things I am really furious about is how no-one listened to me, and if I had followed their advice I would be dead now. I can't believe there is no follow up help available. I have asked my GP for a follow up appointment with a specialist so I can understand what happened in the operation, and what the implications are for my husband and I going forward. Apparently I cant have this either.

From the moment I fell pregnant, every medical practitioner I talked to assumed I was crazy and hysterical. I lost count of the number of times they patronisingly 'patted my arm' and reassured me that pregnant ladies get these worries but there's nothing to worry about, as though I became deranged when I fell pregnant. I am afraid now to take any help from them. My husband wants me to go back and speak to them again but I don't trust them at all. I want to complain to the GMC but the process is too hard.

I wish my mother had been able to help me the way you have helped your daughter. I think the fact that you are here at all is very positive. And I am sick of being told I am too angry! I paid (until I lost my job, again after this all happened) my taxes every month and I was told they were spent on the NHS to help people when they are sick. It seems, not women. We are written off as crazy. We are not offered counselling, we're told to drug ourselves and stop crying. I am furious. And what does this mean for my future? Since then, I thought I was pregnant again (false alarm) and my husband told me to go to the doctor. I said I would not and I would not go to hospital to have my baby either. I feel safer having it alone on the living room floor. How do I get over that and move forward? And how dare they blame my anger on the child's death? I am angry at THEM.

SharonB222
Posts: 9
Joined: Tue Nov 10, 2015 3:01 am

Re: Disappointed with Ectopic care

Post by SharonB222 »

Celine, I think in general this society discourages women from being angry. I am sorry for your treatment (or lack thereof) trauma. It would be great to hold medical care accountable. Instead of - the dr's and staff are doing their best - to ensure they have the education and tools to do the best. Even for my ep#2 with a dr I respect my care was rough (e.g. nurse communication, Uncertainty).

salsal0101
Posts: 1
Joined: Fri Jan 06, 2017 8:16 pm

Re: Disappointed with Ectopic care

Post by salsal0101 »

I was nine weeks pregnant 1st time at the age of 41 unbeknown to me, as I had my periods throughout, I had been extremely tired and had pain though not severe on my left side, I went into my doctors surgery to make an appointment as I had done a pregnancy test the night before due to the advice of a work college the tests were both positive, my doctor just happened to be going on her lunch break and she overheard my concerns, straight away she said for me to come to her office, she felt my stomach and asked some more questions, she then called and I must say she was in a panic as she couldn't find the number but any hoo she got there bless her, I then had to make my way to the local hospital to get blood test they did a scan also but the nurse couldn't see anything, she was quite nasty about my size but hey hoo that seems to be acceptable, I was asked to come back two days later at a certain time but they called me the following day to say to come to the hospital straight away, I was then internally scanned in much more detail and the doctor said he thought but was more than sure it was an eptopic pregnancy he asked if I knew what that meant and I had never heard of it he explained that the baby was stuck and that it would need to be removed, I was then taken to another hospital by ambulance and I had the baby and left tube removed, they tried to remove via my belly button but there were complications so they ended up cutting me from one side of my stomach to the other resulting in 24 staples, I stayed in hospital got myself out of bed it felt like my stomach was going to fall off, but I got on with it more than likely due to pure stubbornness as there was no staff to help, any hoo I asked to get released on mothering Sunday instead of the Monday I couldn't bear being in there while mothers were getting cards and stuff, I went home holding my stomach the entire journey home got home and then I was still not sleeping this went on for well over a week and I started to become manic unfortunately then I contacted for help they sent out the most useless doctor who threatened to section me if I didn't go in of my own accord so now absolutely terrified we waited on the ambulance oh and the police I was taken into the nearby mental health hospital were I was treated terribly and I finally picked up the strength to make serious complaints for them to come back and say that the things that I said happened to me could not have.!!!! The result me being in there for just over three months and coming out with a diagnosis of bi polar and now on med's that have made me balloon by a further four stones and I also have this stupid rod in my arm to help prevent getting pregnant as the med's to treat bi polar have terrible brain defects on the baby God!!!!!! Thanks for reading this if anyone has!!!! It's good to get it out

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