Mumnets people how about an 'Ectopic pregnancy' board?

[memoo]

I know we have one for Miscarriage but as a women who has had an ectopic pregnancy I do often feel that the miscarriage board isn't the right place to post. there are a lot of issues relating to ectopics that don't apply to women who have had a miscarriage. For many women who have an ectopic pregnancy there is damaged caused that can hinder future conception, I for example lost a fallopian tube and my other one was damaged meaning that I will find it very hard to get pregnant again. I could write a big list of issues relating to ectopic pregnancy but don't want to waffle!

actually, there is one case at least of an abdominal ectopic pregnancy who is now a lively 7-year-old lad, so i'm afraid it's you who is misinformed.

and really, signing a termination form is never easy and for me at least did feel that i was taking something away from my baby (as opposed to my unviable pregnancy) and i would very much have appreciated the emotional support of memoo and lissie, who i feel would have shown more sympathy than you have. you're factually correct, in more instances than not, but to ignore the emotional reality of the end of an ectopic pregnancy is, well... that's really the doctors' job, not yours.

and tbh as invaluable as i found the medical side of the ept (izzie, a star and now a friend), i did find the ghastly chumminess and ill-educated posturings of a lot of the posters rather nauseating after a while.

Well Aitch,
you are entitled to your opinion, but i dont believe that using emotive untrue statements like you amd memoo and lisielou is going to help anyone,
That your baby had to die to save your life? How would that not be distressing- one case worldwide is not significant.
and EP surgery IS NOT a termination, again that is very very distressing and offensive to any woman who has lost a baby.

Any you suggest that im ignoring the emotional reality of an EP, my God!

And describing the the ghastly chumminess and ill-educated posturings of a lot of the posters rather nauseating after a while- well i assume there is more to that then meets the eye. Personally i found them great for support and i wouldnt have recovered without them.

BTW Aitch, i said a tubal pregnancy is never viable and this is true. Yes sometimes abdominal babies can survive but this is rare.

news.bbc.co.uk/1/hi/health/443373.stm
please note, it was a tubal pg that ruptured and then moved to abdominal wall.

look, i'm not wanting to chief you out but a few googles can find a number of eps that have made it to healthy term.

it's a one in a zillion shot, absolutely, but really for you to ignore the feelings of women who have found it hard not to think of the long odds is just downright rude and insensitive.

if anything, one of the problems of the EPT website is that the non-medical people don't move on from there, they get too involved in one area and mistakenly think that they've become world authorities on a very complicated (emotionally, physically, medically) subject.

yes, i send someone with an ep to have a look around there, but if you've been posting on MN then imo asking for a little support from your friends and a more inclusive pregnancy loss board is a good thing. no-one on here is advertising their credentials falsely, as i understand it.

i see we have x-posted. have a look, there is not just one case in the world, i'm reluctant to post them on here as i don't want to upset people.

i had to sign a form specifically agreeing to terminate my pregnancy, and so did many other women on here. THAT is why we refer to it as a termination, and given that you are terminating a pregnancy that you are being told is unviable and is a threat to your life, it carries no judgement whatsoever. but it still can feel like shit signing it, and it is that to which previous posters were referring.

i too would not have survived without the EPT and Izzie during my two ectopic pregnancies. in fact, had it not been for Iz i would likely have gone on to terminate what turned out to be my dd as that's what the medics were recommending as it was 'definitely another ep'.

she's an expert whose opinion i trust, whose views and knowledge are hard-won both personally and professionally. she, for example, has more sense than to operate on the basis that there is only one answer to a given problem. would that we all had such flexibility of mind.

Gsmom - aside from the very rare, but nonetheless true, RL cases around, it is not fully accurate to just say that a tubal pregnancy is never viable.

My own ectopic pregnancy was doing jsut fine, apart from the large flaw of implanting in the wrong place. As far as could be told at the point at which my pregnancy was removed (which unfortunately is referred to as a medical termination - not nice, but true) there was nothing wrong with my baby. But it had to be removed as other wise it would have killed me. When I was operated on, I was 8 weeks+ pregnant, and my baby had a heartbeat. The only reason it was not viable was because of the place of implantation, so it is techically true that my baby had to die to save my life.

Not a nice htought, but one that I have dealt with (with much help from the EPT).

I do not think it is helpful for you to dismiss other people's thoughts and feelings on their ectopics as "untue emotive statements"

FWIW, I agree that having a separate board for eps would not really work, but to have the miscarriage/bereavement board wording changed ot encompass all forms of loss might help, along with,as someone suggested below a permanent thread running for support maybe.

Aitch i dont want to fight honestly. But id rather trust the opinion of the EPT site than a few googles, many of them which are untrue.
As you say yourself it is one in a zillion chance that a tubal pregnancy is going to survive, so why then say that the baby has to die to save the mothers life or to call surgery a termination??? I have to say im astounded that you would not consider this as seriously distressing, but call me insensitive for pointing out that a tubal pregnancy is rarely rarely viable?? For me if id just had an EP, id rather hear the facts, that my baby would not have survived, that i could have died without the surgery, than be told id just had a termination or that my baby had to die to save me. Now that is insensitive in the extreme. it is also extremely dangerous- pointing out that tubal pregnancies have survived ( which i dont believe) might only give out the message that you should wait and see, not have treatment in case your baby makes it- Again extremely dangerous.
Im not being insensitive- im being responsible and trying to save unecessary distress.

Ive never witnessed members of the EPT site calling themselves world authorities on anything. The medical advice is given out by Izie or medical hosts based on sound empirical reseach. The ladies there just support each other.

I really dont want a fight, but i do want to point out to any lady who reads this and has just had EP surgery, Your baby did not have to die to save you, and no you did not have a termination. You had surgery to save your life.

I think this is a really good idea. I have had 2 ectopic pg 1st lost tube 2nd self resolving. Never thought it would happen to me after having a healthy pg with dd. Lots of issuse surrounding it and ttc afterwards.

i think you think you know more about how other people might feel about their eps than you do, tbh.

if you were never troubled at all by the signing of that termination form, i'm pleased for you. but here's the thing... the lady that you're worried about, the one who might read this thread and be distressed by reading that her ep surgery was a termination... she might in fact already be feeling like shit about it and may in fact be relieved beyond belief to hear that other women have experienced the same (not completely rational) feelings as her.

we can't tell, and we have no business telling, fragile people how they should feel. all we can do is say how we felt and offer support.

that last post to gsmum, obv.

But silverfrog- you baby would of have survived so it didnt die to save your life. it died because it was in the wrong place.And Izzie Aitch is the first to point out several times a week on the EPT site that a fallopian tube is not anatomically capable of holding a pregnancy beyond a few weeks.

Would you not agree that calling life saving surgery a termination is distressing, or that a baby having to die is also distressing. Or that tubal pregnancies can survive is distressing,and dangerous. If people feel im dismissing others opinions than im sorry for that, but these opinions could seriously distress others. I lost twins in my first pregnancy, one was ectopic, ive had 3 miscarriages, never once did i ever believe that EP baby died to save me, because the poor mite didnt stand a chance anyway.

ok i give up- if telling ladies that thier babys died to save their lives, or that they had a termination, or that tubal pregnancies can survive is called support then i dont want it- to me its not support at all, its inaccurate and deeply offensive.

and that is what YOU need to believe to aid YOUR recovery... stop dictating to others how they should feel.

i SIGNED a termination form both times, do you understand that? was that offensive to me? deeply. did it change matters? no. does it mean i struggled with the memory of what i had done? yes, very much, despite the fact that my rational self was more than aware that it was just terminology and that yes, the pregnancies would in all likelihood have been non-viable and would have caused me serious harm to continue.

the fallopian tube is not capable of containing and sustaining a pregnancy... that does not actually mean that the body can't sometimes do amazing things to protect it. witness the case of the triplet boy, the one that despite being on a BBC site you don't seem to believe. some more cases by the way, all from reputable sources. mostly abdominal but impossible to say whether they were previously tubal and moved

would i do the same thing again? absolutely.

would i advise others to do so in my position? absolutely. and have done. and have saved lives because of it, as it happens.

however, would i be rude and aggresssive to people discussing Their Own Feelings on a website just because they didn't chime with mine, accusing them of misinformation etc when i myself was not in possession of all the facts? nope.

in fact, it was that kind of behaviour that made me tire of the EPT boards and come here. that, and the fact that my life, thankfully, moved on from the immediate pain.

Gsmom, I'm sorry for your EP and I'm sorry if you are offended.

Can I just clarify though that i didn't mean that we would be able to give women medical advice, I was talking about frienship and support for women who have been through the same traumatic experience.

Alos, i like others found that my Doctor refered to my surgery as a 'medical termination' and it also stated this on the form i have to sign.

Of course I always knew that my baby was never really viable, but i and many others can help the way we have felt. despite what medical fact may tell us feelings and emotions don't deal in fact.

I feel that your are being slightly dismissive of peoples feelings, just because you didn't feel the same way it doesn't mean we're wrong.

You say that our feelings are distressing others but i have found it a great comfort to find out that other women have felt the same. I have posted on the EPT site many times and have heard women expressing all kinds of feelings about their EP, Sometimes I haven't been able to understand why they felt that way but i accepted that their feelings are valid and very real to them, I do think you need to try and be more accepting of others feelings too.

I

Gsmom I think that you and Aitch are talking at cross purposes here. Aitch is talking about feelings, and you are talking about facts. lissielou and memoo said that they felt they had sacrificed their babies lives, and that this was difficult to come to terms with. Clearly the medical profession's decision to use the term termination for ectopic surgery is insensitive, but it is the term used, and technically it is accurate (just incomplete). I really don't think you can dismiss other people's feelings even if your knowledge of the facts don't support them. You can discuss them, reassure them, support them etc, but you shouldn't dismiss them.

"Much better to direct ladies to the EPT site where accuarate info can be given by mediacally trained people and therefore women having received that accurate info can go on to give accurate and appropriate support."

by the way... this is what i worry about wrt the EPT board. i received their 'accurate and appropriate support', and am profoundly grateful for it, but i seem to have emerged with vastly differing conclusions from you... (mine, of course, being backed up by actual data).

it was the strength of righteousness and the simplistic fervour of those boards that put me off in the end. i always remember getting terribly upset when mothers would come on and say that it felt exactly the same to have an ep, regardless of whether you had children or not. that was not my feeling (nor was it when i had a threatened ep after dd) but it was the prevailing viewpoint that Must Not Be Argued With. i feel that did a lot of damage to women who were terrified that they would never ever become mothers, it certainly did to me. not that there is a scrap of medical data or research to back up that assertion, in either direction... but still it could not be discussed.

anyway, please don't assume that everyone on here didn't start off on the EPT boards, getting the same support you did, and have 'graduated' from there knowing a thing or two themselves about eps and the feelings that surround them.

perhaps some of us are further away from the pain, even, and are able to discuss their feelings without having to apply a black/white/good/bad template?

sorry, though, to hear about your pg losses, it sucks. that bit we no doubt agree on.

Feeling safe to say how you felt and be supported is what is needed, regardless of the board.

The majority of SN mums have asked themselves "What did I do wrong? How did I make my child like this?" Is it medically their "fault"? No. But it sure as hell feels like it at times. Knowing others have felt the same is a verypowerful form of support.

amen, flamey.

well said flame

Ok girls,
im very sorry that people see me as dismissive or as unfeeling- believe me im not, ive suffered too, just as much as anyone here. Im coming from the perspective that the words termination- this by the way was never mentioned or printed on any form in my hospital- is or can be distressing- to me EP surgery is not a termination, and i personally find it difficult to see it or name it as that. Surely there are more appropriate descriptions??

Memoo, i totally understand that you might feel that your baby died to save you, that of course is a natural reasction, and one we all struggle with. But i read your post as that you were stating this as a fact rather than a feeling IYKWIM, and that could be distressing to others too if they take it up the way i did. Sincere apologies if i took that up wrong. To me if someone said to me as fact that i terminated my baby, or that the baby died so i could save my life, then i would be very upset. We have enough to deal with without that as well. But im sorry honestly if i misinterpreted your post.

Aitch, ive taken a few minutes away from your comments on the EPT, and you know what, hands up i agree! There is an unspoken no debate rule there that can be upsetting to a woman who wants to air their views but cant for fear of being censored. But, in saying that, we are debating here, and that therefore cant be all that bad . If an EP board here allowed debate then yes, that would be an advantage that the EPT dosent allow.

Ladies, im sorry if i came across as aggressive, my EP was 3 years ago, but together with other losses is still raw (most recent last month), i just really dont want to think that my baby died for me to live or that i had a termination.

Apologies again for any offence caused, i really didnt mean my points to come across that way.

OOH HECK I HAVE ONLY JUST SEEN THREAD AND oops haven't yet waded through it

but agree with aitch's point of, ooh, ages ago

whilst we should, of course, continue to offer support wherever we can here, i don't think we should tread on the toes of the EPT site

we generally point people in their direction (if an ep is suspected) and with good reason - they have experts ready and waiting to help

i shall also say one other thing: one person - once - deigned to suggest to me how i should be feeling after my ectopic

i don't think she'll do the same again

no question about it, gsmom, signing a form with the word termination on it is a massive kick in the guts at a hugely vulnerable time. it's a disgrace that the form says that in my local hospital, and i have complained but it's an admin thing, they tell me. it's a fookin' disgrace, i tell them.

sorry to hear that you've just had another loss so recently - it's bad, isn't it? such a shame.

i think everyone understands each other now, thanks for coming back to clear that up. and yes, absolutely, on MN the debate, the research, the knowledge as power is EVERYTHING. it makes me really proud to be a part of it, tbh. #

but right at the very beginning, when a hug and straightforward medical advice about the 'norms' of ectopic pg is what you need, the EPT site is excellent. here, you have to remember, we are friends who are parents for the most part, so we club together when something bad happens to one of us... because we are on MN as much as because of whatever shitey thing's just happened to us.

so ladies, what are we going to suggest to MNHQ then? changing the name to Pg Loss? do we want a subdeck saying 'this might include ep, misc, molar, stillbirth etc' or do we fear that might exclude some people?

thing is, on that board i'd like to think we could offer support to people who'd had (more 'voluntary') terminations but i wonder if that would even be possible as feelings would be so hideously raw for so many people? do we have to leave that out, or is that why Pg Loss might cover all ills?

Gsmom, I agree with aitch that we all understand each other now. At the end of the day we've all been through a very traumatic experience and its that that brings us together, we all share an experience that many people would be unable to understand unless they had been there too.

Aitch, I think we should ask them change name to pg loss as you suggested and i think the idea of including people who have had a 'more voluntary' termination is wonderful. Many women must really stuggle after doing this, and i'm sure that they feel the loss of their baby too. For some women they don't even have a real choice if its for medical reasons.

Hi thanks Aitch and memoo- sorry again for any misunderstanding.

I agree a pregnancy loss board is a good way forward. I also think ladies who have had voluntary terminations should be included,my one reservation though would be that these women might be open to attack, for want of a better word, from others who lost their babies through another type of pregnancy loss?? There would want to be some etiquette regarding that?

I agree Gsmom, there would definately need to be some rules layed down. Its a tricky one really, and i've no doubt there would be people with very strong feelings.

And no worries about the misunderstanding, this is a very emotive issue and we got there in the end