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!

I had an ectopic pregnancy recently. It was missed by the EPU scan at 7 weeks...therefore my tube ruptured and had to be removed. I lost 2 pints of blood internally and apparently could have died. They couldn't perform the op via keyhole so I had a full scar like a c-section. I'm still traumatised by it all. I think the board would be a good source of comfort/support.

I'm sorry you had to experience an ectopic too.

That's a good idea, although have to say I would recommend www.ectopic.org.uk for good information and advice. I am sad to see on mumsnet how many of us have had ectopics.

I think it is a good idea.

The Ectopic Trust website has been really useful, but sometimes I have really silly questions and I reckon I would feel less of a numpty posting them on MN - I just never know where to post them.

There are a lot of us who've had an ectopic, and it can be a very traumatic experience, one that can haunt you for a long time afterwards.

Dropdead, I had a very similar experience to you, I collasped because mine had rupture, had to be rushed in to theatre for emergency surgery, opened right up so like you had a massive scar, had lots of internal bleeding and nearly died.

The scary thing is that women still die in this country because of ectopic pregnancy. There are signs and symptoms that I had no idea about but that I think women should be made aware of because being informed can ultimately save lives.

We'll certainly add this to the list of things to discuss at our next meeting and get back to you. In the meantime, if you feel strongly about this, please do add your comments to this thread.

Thanks Rachel, that would be great

good idea. while the Ectopic Pregnancy Trust site is just fantastic there are perhaps ladies who are already comfortable here.

I have posted on the ectopic pregnany trust boards, and while i have found them to be really informative there is a much friendlier feeling on mumsnet.

Also women tend to go and look the EPT site after they have had an ectopic. One of the things I feel is important, is to educate all women about this subject. If all women where well informed about the signs and symptoms they may seek medical advice sooner. Instead many women have no idea what is wrong with them and the first time they realise its something serious is when they collaspe.

I was lucky that when this happened to me I had my friend with me, but this isn't always the case, sadly an average of 5 women die in this country every year because of an ectopic pregnancy. These deaths would have been easily preventable if medical treatment had been given earlier. Husbands are left without wives, children are left without mothers.

Actually that's a good idea - I have had miscarriages myself, and I have friends who have had ectopic pregnancies. What we've been through is very different. My early miscarriages were very 'natural' processes, needing no medical treatment, compared to my friends who nearly died because of their ectopic pregnancies.

Thanks for your suport Belgo, So sorry to hear about your miscarriages x

It would be excellent if we were to be more informed about ectopic pregnancies. I for one would not have a clue what to look for with regards to symptoms.

Sorry to any of you that have had an ectopic pregnancy.

i agree totally, i have had 7 mcs and 1 ep and the effects have been totally different. any extra info on ep would be great, because lets face it, you never think that it will happen to you!

lissielou, i'm so sorry that you have had so many miscarriages and an ep, i really od feel for you. you're so right about never thinking it will happen to you, I had to normal pregnancies before my ep so i awlays thought i'd never have any problems, it was a real shock to have an ep

Lissie you're right that an ectopic is such a surprise. I was sort of prepared for early miscarriage, given the statistics, but was so shocked by my ep. I couldn't believe it when they told me it was 1 in 80 pregnancies now.

I was thinking about why it would be so good to have a separate topic and I think the main reason for me is that if you are ttc after an ep, you have (or I have) this fear that there is something wrong with my tubes and it will happen again, especially as I kept my tube. The NHS will not do any tests on me because "HSGs and Laparoscopies are to check for infertility and you are clearly fertile". So I bumble on wondering whether one (or both) of my tubes has got damaged without me knowing.

Sorry, I'm not expressing myself very well, but there is a real lack of aftercare following an ep and it would be good to have somewhere to talk specifically to other people who have experienced the same. And good as the EPT site is, MN is sort of my internet home.

thats a good point. i now test after every period "just in case" and i am terrified of getting a post period bfp! having an ep has definately changed ttc beyond "just" the fear of losing another baby. im now scared that ttc will one day cost me my ife too.

i agree with you both totally, I'm so paranoid about having another ep that i'm seriously thinking about getting my (one remaining tube) tied. Its terrifying when you think that you could have died!!

exactly. and i think i found coming to terms with the fact that my baby was removed so i could live very hard. when i mc'd i could believe that it is one of those things. something wrong. etc, etc. but with my ep the bean was growing and healthy.

lissie, i know exactly what you mean, even 3 years later i still have these really irrational feelings of guilt, that somehow my baby knew i signed that form for them to take it out of me. Thats one of the hardest things with an ep, to lose a baby is one of the most painful things, but to have to live with the knowledge that it had to die to save me is torture,

I also spent a lot of time agonising about what they had done with my baby, i desprerately wanted to see it, i can't bear the thought that they look my little baby out of me and then just threw it away as 'clinical waste'. For a long time i had nighmares where my tiny baby was alive somewhere in the hospital, it was crying for me but nobody heard it.

actually... i wouldn't like it to be a separate board, because i think that a lot of people's first ep symptom is bleeding and that would make them think miscarriage and google it/look for it in topics. so the ep part might be missed. however, adding something to the name might be useful. what is it now, miscarriage/bereavement? i've probably got that wrong.

what about pg loss, with a covering note from MN at the top saying 'for discussion of pg loss, which might include misc, ep, molar, stillbirth etc? or just pg loss and let people make their own minds up?

ep is very different, no question about it, but i do think that an ep support thread running may be enough. cos i'd really be uncomfortable about taking people away from the ept site, as they do at least have trained medical mods there.

Aitch, i think you have some good points, and i agree that the ept site has really good moderators on it, indeed i found it really useful after my ep, but I didn't even know it existed before hand.

Thats the only problem with the EPT site is that people only tend to go on it once they've actually had an ectopic pregnancy, and I feel its important to educate women before they've had one so that they know what to look for, ultimately that means saving lives.

Some women do have bleeding with an ep but many, including myself, don't. One of the main symptoms in abdominal pain, usally on one side, its also usual to experience shoulder tip pain once the ep has ruptured.

I do agree with you that have a pregnancy lose board that encompassess ep, miscarriage, molar etc is a good idea.

yes, but i don't see how an identified Ep board will help to spread the word, as it were.

i don't imagine people who haven't recently had a miscarriage spend time on the miscarriage boards either, so in terms of education and saving lives, i think we're stuck with keeping an eye out on active convos for people who are posting in Pregnancy (as opposed to Loss, iykwim, because they haven't lost anything yet, they just have a funny symptom and sometimes a Bad Feeling).

those are the poor bastards who want to hear that those pains are stretching, that the bleeding is normal etc etc... and 90% of MN respondents will confirm that for them, becasue eps aren't really that common. and then we come along and say... 'don't rule out an ep' with as much kindness as we can, while knowing just how painful it will be if we're right.

I agree that is is doubtful that many women would come onto an ectopic pregancy topic to learn about it unless they had specific reason to do so. I certainly never gave it a second thought until mine happened, although of course I was aware that such things do occur. So from an educational point of view I am not sure a special topic would help.

What it would help, though, is to have somewhere to talk about the experience. It did not feel entirely appropriate to do this on the miscarriage board. I would look at those threads and lots of the posters were getting pregnant and miscarrying repeatedly, whereas I tried for ages (presumably because of my tubes) and only got pregnant with my ep. It just didn?t seem like the same experience to me.

It would also be good to have somewhere to ask those questions where the answer you want is based on other peoples' experiences. I remember asking, for example, whether anyone else had not bled after methotrexate. Of course I called the hospital the next day, but some reassurance in the interim can't hurt. Another thing that has been bothering me is whether it is normal to have very light periods after an ep - I have asked medical people who seem to think that anything is normal, but it is one of those questions where a "yes, that happened to me" would be very helpful. The obvious port of call is the EPT site, as they have just so much info, and I am sure any of us would point someone going through an ep in that direction, but MN is different, if only because of the volume of traffic. Now that I am feeling better about my ep, I tend not to visit the EPT site much, but I am on MN nearly every day and do check on threads about ep (if I spot them) on a regular basis.

I might be a good idea to rename the miscarriage topic 'pregnancy loss' as suggested by Aitch. We could always keep a thread running for people wanting to talk about eps within that section - or within the pregnancy section, if that would be more accessible..

""yes, but i don't see how an identified Ep board will help to spread the word, as it were""

Aitch, I agree with you, thats why i said at the of my last post that having a board that encompassess all pregnancy loss would be a good idea.

memoo and lissielou,
seriously dont try and educate people about ep until you know the basics. Your baby did not have to die to save you, neither did mine and neither did any of the ep babies out there. a tubal pregnancy is never viable, and to suggest that somehow they are and that they died to save the mother's life is deeply distressing not only to me but also to others as well im sure. So i wouldnt want a separate board if misinformation like this is whats being writeen. 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.