Ectopic Pregnancy with Mirena Coil. A story shared

[Dophus]

I just thought I'd share my story.

I have two beautiful boys (4 and 20m) and had a Mirena fitted after each. I had been getting intermitent lower abdominal pain for a couple of weeks which steadily got owrse. The pain felt 'in my bowels'. It got steadiy worse until I attended out fo hours surgery on Tuesday night. The doctor refered me to the local hospital as he was concerned I had a bowel kink.

During routine tests they discovered I was pregnant. A complete shock as I know the coil was still in place. They admitted me but as they had no beds I spent a miserable miserable night on A&E in an uncomfortable cubicle, no ability to tur out hte light, noisy, a couch rather than a bed. Given the pain they were concerned that the baby was eptopic. I also knew that even if it wasn't that removing the Mirena would almost certainly induce a miscarriage. It was a long dark night on my own. No one even checked on me. I was given no fluids despite two lines being put in. My husband was absolutely stunned to find me where he's left me when he returned in the morning.

I was eventually transferred to a ward and promised I would be taken down for a scan soon. I waited and waited, no one came to see me, my husband kept requesting to see the doctor etc etc. They didn't want to give me much in the way of poain relief in case it was viable.

Eventually after nmuch badgering I was taken to the early prgnancy unit where I waited whislt they finished their routine mornign clinic. I waited in my nightgown and drip int he waiting room whilst they finished doing all the routine 12 week scans, handed out the photos to the proud parents, chatted and eventually passed me on to a junior sonographer who cheerfully asked me how long I knoe was pregnant etc etc. She inserted the vaginal probe and kept talking about how much was 'going on' focussing on a blob (egg sac) in the utuerus, no montion of the foetus that even my husband and I could see, large amounts of fluid and a large ovarian cyst. Eventually she called a colleugue who spotted the ectopic and told her the 'blob' was just clots.

I was then returned to the ward and then left for another couple of hours before a doctor came to see me to say they'd be operating soon. They removed the foetus and cyst and one fallopian tube in a two hour 'keyhole' operation. The rest of the day is a haze and the nurses were fine. I saw the doctor once more the following day when she told me to go home. I said I didn't feel ready as was in a lot of pain and it impossible to recover with two young children. She told me that most woman do this a day operation. I guess I'm not most woman.

I was relieved to go the next day. I didn't see a doctor again, the surgeon and was given no info on the operation, the post op care or recovery.

Apologies for the rant. I have been though a lot and found the experience has emptied me somewhat. I think I have been so cross witht he standard of care offered by the hospital that I have only just begun to feel the hormonal loss and emotions.

What has happened is extremely rare 1:10000 as Mirena is generally considered the most reliable form of contraception, safer that sterilisation. I guess shit happens and shit happened to me. I just keep thinking now about the little foetus and waht could have been

[SpringBlossom]

I'm not surprised you feel so awful - you've been treated, at best, carelessly; at worst, it would seem some aspects of how you've been treated seem to verge on negligent. That said, I would strongly recommend not getting too focussed on the anger and focus on trying to be kind to yourself and finding a way through what has happened to you. To lose not only a baby (whether or not you had planned it) and a fallopian tube is extremely shocking and you need time to take on board what has happened. You need to find someone to talk it through with to try and make sense of it all. I had a late miscrriage last year and two thigns got me through - friends who didn't mind me telling them the terrible details at length and over and over again; and women who had been through the same thing. Ultimately I found it was this group that were the only people who could really understand, however kind other people were.

I really feel for you and hope you can find a way of letting go of the anger and dealing with all the pain of what has happened.

[Dophus]

To be honested I think that just writing it down was cathartic. I hadn't realised how pissed off I was. I sat down to share my story as in to help deal with the mc pain and emotions and surprised that it turned into a rant re the NHS.

It is the loss of the baby that is upsetting me and I don't know how to talk to my husband about it. I am desperate for a third and he is not so I find it hard to talk to him . He is dealing wiht my physical pain well but can't recognise that here is mroe than that for me. I think the hormones have really hit today as I have started to become really weepy.

[Dophus]

On a pratical note - the bleeding has taken me by surprise - how long should I expect to bleed for?

[MrsHappy]

I'm so sorry.
I've had 2 ectopics and they are awful, I know, but such poor treatment must make things a lot worse.

Re the bleeing: with my second ep I lost a tube and bled immediately after the op for a couple of days. That then stopped and a few days later I bled again for about a week (which was the uterus lining shedding once my body realised it wasn't pregnant).

IME there isn't really any post operative care provided after a salpingectomy. The recovery should hopefully be relatively straightforward; you just need to rest if you feel you need it.

FWIW at my local hospital they were shocked at my suggestion that they should let me go home the day of my salpingectomy (and I made that suggestion before the op - afterwards there is no way I would have left). They told me patients should be kept overnight after the op. It sounds like your doctor was crap.

[2children]

hi sorry about your loss would like some advise as i had a mirena coil removed on mon as i was having some pain with it and my dp could feel it .
when the doc took it out she said that it was causing me pain because it was falling out i asked if i could be pg and she said that the coil was still working.
since then i have had some pain like brused on my left side inside and i dont know if its because of the coil being removed ...

[Dophus]

Mrs Happy - thanks for your input.

Getting over the physical pain (although have low fever today and wondering about infection). I think it is the emotional pain really kicking in today. On the one hand it seems hard to feel loss for something that I ddin't know was there, on the other I so desperately want a third child. I just can't believe that I was actually pregnant.

ps I even overheard doc on the phone after I said I didn't want to leave asking about hospital policy for ectopic pg.

2children. The pain was as you describe - only one way to find out...

[2children]

i done a pg test today and it came back negative and pain is not as bad but kept me up alot in the night and i have a back ache today too ..
hospital staff can be very igorant and should respect people when they dont feel ready to leave hope you start feely better soon your emotions will take alot longer sending a hugh hug to try and help ....

[MrsHappy]

If you have a fever I think you should call the GP. It is my understanding that post-op infections with keyhole surgery are relatively rare (in fact they don't routinely give antibiotics during surgery any more), but you don't want to take any risks.

The emotional recovery will take time, especially if it takes a while for your hormones to fall to non-pregnant levels. The only thing to do is to ride it out.

As for the grief, well, it doesn't get better in a linear fashion. For me, I felt ok one day and then it was two steps back a few days later. But you will get better in time. It helped me to tell myself that my ectopics probably were not viable anyway, or they would have implanted in the right place. From a logical perspective it is probably not the best explanation, but it helped me to feel better to think that I hadn't lost a baby, I had lost the chance of a baby and that there would be other chances.

I hope you feel better soon.

2 children I think you should see your GP again. I think it is unlikely that you have an ectopic (as the GP said your coil was working and because generally with ectopics you do - eventually - get a positive test) but you should probably tell him/her you are in pain. Alternatively, if you start a thread in the health topic someone else might come along and tell you they've had this pain too...

[Dophus]

I find myself being extremely irrational - eg 'maybe if I hadn't done so much running then it would have implanted in the right place'

The rational side of me knows that the reason it didn't implant in the right place is because there was a coil there...

To move on I need to believe I can have another chance but I can't see my husband agreeing.

Mrs Happy - do you have children now?

[MrsHappy]

I have a DD from before my ectopics, and am now pregnant again (6 weeks only) - this one is apparently in the right place. We were trying to get pregnant when I had the ectopics, so a slightly different situation. I appreciate the pain is the same, though.

You are of course right that there was nothing you did wrong. Unfortunately this is just the problem with the coil - when it works it's great, and when it doesn't it can be devastating.

If your husband is anything like mine he will just be glad you are (physically) ok right now. Most of us who lose a tube are advised to wait for at least 3 months before trying again (which doesn't mean we all do, but it is the advice). Give yourself time to recover -right now you are all hormones and shock and that may be making your longing for another baby even stronger. He may come around in time, but being diagnosed with and treated for an ectopic is shocking for both partners, so you both need time to process what has happened.

[Dophus]

Congratulations and hope all goes well.

[wilbur]

dophus - so sorry for your experience and loss. I had an ectopic pregnancy between my 2nd and 3rd children, very upsetting as it was at 11 weeks which is v late - do you know approx how far along you were? That will affect how long you bleed for. Unlike you, I was treated very well by the hospital and a wonderful female gynae surgeon who understood my sadness and also my worry about losing a fallopian tube when I still wanted another child. I would def write to the hospital describing your experiences, if only to give them a shove to do it better for other women in the same position. Hope you feel better soon.

[cmotdibbler]

Dophus - I'm so sorry for all that you have been through and the loss of your baby.

Can I urge you to complain in writing to the hospital ? It is totally outrageous that you had to wait all that time, and were made to wait in the same place as people having 'normal' scans. And as ep can be life threatening, they should have scanned you straightaway to find out what was going on, and monitored you carefully.

I formally complained to the PALS after my third miscarriage (I won't bore you with the litany of what happened in all 3), and although of course it didn't change anything for me, I did find out that they had changed some of the things as a response. And all formal complaints have to be sent to senior management in the hospital and they do have to justify what happened - so it can't be swept under the carpet.

[lily85]

Im new to all this and stumbled across this thread while looking for advice myself about ectopic pregnancy.
I found out last tuesday that i was pregnant which was a massive shock as i thought i was just having tummy problems and a little irregular bleedingas us women do.
Although not planned i was over the moon and my bf was shocked but happy.
Due to the bleeding my doc arranged for a scan at the Early pregnancy unit for the following morning, which showed that the pregnancy was ectopic, i was mortified to say the least! but i have to say had great support from the hospital staff which im sorry to hear that you didnt Dophus.

It was all arranged really quickly and within an hour and a half of the scan i was ready for surgery, i was given one other option which was an injection which i decided was not for me.
Before i knew it i was back on a ward with my bf and parents at my side.

That was a week ago today and although the physical pain is beginning to healthe mental side of it is beginning to kick in.
My tummy is still swollen and everytime i get undressed i want to cry. its all a litte bit up and down at the minute, one min im fine and the next im sobbing at the thought at what might have been if the little one had just shuffled down a little.

The hard part is the longing for a little one and my boyfriend bless him has been great with what i have gone through with the op but doesnt understand the mental side of it.
He is not keen on us tryin for a little one for atleast 2 years where as this has strangely made me long for a little one now more than ever.

[OracleInaCoracle]

lily, im sorry for your loss. an ep is incredibley traumatic, and you are bound yto be a bit swollen and very emotional for quite some time. i said on another thread that we have plants for our lost babies (8 mc's and 1 ep) and i find taht very helpful. just because they were never born, doesnt mean i cant miss them.

[lily85]

Lissielou, thank very much for your reply, yes i am quite emotional at the moment and feel sometimes as if my partner just sees as an operation i have had , not that it was our child that was in their and im finding that quite hard. x

[OracleInaCoracle]

its very tough. i was quite messed up for a while after mine.

[rattytatty2]

hi dophus,

I have just read your account of your awful experience. Im so sorry that you went through this. Exactly the same thing happened to me. I was disgusted at the way i was treated by medical and nursing staff. Nobody tells you anything do they?? they drop the bomb shell on you and then throw you a box of tissues which obviously makes everything ok.
They see 'a clot' what we feel is the loss of a baby, you do go through the bereavement process. They were so complacent.
I lost it with the doctors as they kept asking me the same questions over and over-when was the date of your last period?? they would not listen-I hadnt had any since having the coil fitted.
All I wanted to know was what would happen next- nobody would say....I was just told not to think of it as a baby.
then the wait for blood results to determine if drugs or surgery were required............then the wait for theatre-yes your going no your not.
I eventually went to theatre at 10.30 pm I had been there since 09.30,they tell you that it is 'potentially life threatening' and then clear off- ive never been so scared.
I returned from theatre with a morphine drip-when this ran out I asked for more pain relief but was given nothing.
The doctor came in and said are you the one who had medication or surgery??
I had an awful scar and bruising which i was not warned about, they just told me to shower and take the dressing off. They offered me counselling which I declined-I just wanted to get out of there. Then a nurse came in and said on a positive note you know that your tubed etc are healthy-most women dont know.
I needed to get out. I would have self discharged myself but luckily I had a friend who was a nusre who worked for a community team, I gave the ward staff the number and planned my escape.
It doesnt just go away- you have to work through the bereavement process as you would with any other loss.

take care
tracey

[Perrywinkle7]

Hello,

It's been a while since someone has posted, I'm sorry all of you have been through this, and I hope the memory is far behind you.

I recently had an ectopic pregnancy while using the new Sklya coil (smaller version of Mirena for women who have not had children), and I'd like to share my story, as I haven't seen any stories from women with Skyla. I'd also love to hear others stories of recovery post-op.

I'd my Sklya in last April, and it had been in for 8 months wen it happened. My periods had decreased to about two days. It also changed my PMS symptoms, making sore breasts and mood swigs more common, and my periods slightly more irregular. I also think it may have contributed to increased anxiety, but it was hard to tell, because I had started a new demanding job shortly after I had it inserted.

Thus, I didn't really notice when my period was a week late, my anxiety increased, and my breasts were sore, I thought that maybe my period had finally dried up, which happens to some women on Sklya, but the PMS had still come. Then, a few days after Christmas, after having sex, I felt a sharp abdominal pain. Not knowing what it was, but potentially thinking my IUD had gotten out of place, my boyfriend and I went to the ER.

After a few hour wait, the doctor checked to see my IUD was in place. After confirming that it was, she gave me a pregnancy test. I think she was as surprised as we were when it came back positive. We then waited for the ultrasound technician (a few more hours) to see if it was in my uterus or an ectopic. The technician came in cheery eyes (about 4am now) and talked about how she hoped to find it in the "right place" (we obviously weren't married, and I had an IUD, I don't know why she thought that we were hoping the same thing). Anyways, she confirmed it was ectopic, I was given methaltrexate, and they sent me home, referring me to a doctor to check my HcP rates in two days.

When I went for the check up that Friday, the doctor took my blood, checked my IUD was in place, and told me id get my test results Monday. He then promptly left, offering no more information.

That's when it started going downhill. Saturday morning, the pain started again. Sunday morning it got worse. By Sunday night, my shoulders were searing with pain and I nearly fainted. I attributed the later to my codeine medication. I had no idea that I could possibly still be pregnant or was at risk for an embryo rupture.

On Monday, I scheduled an appointment with a public health nurse, not wanting to go back to the male obgyn, but wanting to know if this all was normal. she took my temperature, and asked me what my blood test results had been on Friday. When I told her that I didn't know, she called the obgyns office, and then the ER I went to earlier in the week. With this info, she pieced together that my hormone levels were rising and immediately sent me to the ER (why the obgyn hadn't pieced this together, I still don't know).

Anyways, long story short, I was in pain and running a fever, and my shoulders were cramping because the methaltrexate had failed and my ectopic had ruptured. After confirming this at the hospital, I was rushed into surgery. I woke up with the news that they'd found the ruptured embryo in my ovary and had removed it along some of the tissue of my ovary. The next few days were a haze of pain and hormones. I couldn't believe what had happened.

The main reason I'm sharing this, is that I'm really curious as to what the recovery process has been for others. For me, it has been a really rough road. It took 6 weeks until I could exercise fully again, and I finally got the Sklya removed a few weeks ago (the doctor wouldn't do it until my periods had returned post-op.. And until my work travel schedule calmed down so that I could come in for the appt). Overall, my hormones have felt crazy and unbalanced, and I still suffer from mood swings and anxiety, neither of which were common before I got the Sklya a year ago. I'm hoping this may finally calm down now that I've gotten rid of the Sklya, but I'm not really sure what to expect. My 5 months now of instability have been affecting my relationship, and my own self confidence that I can be a stable person.

Can anyone else share their stories of recovery? Did anyone else have the mirena/Sklya coil removed weeks or months after the ectopic surgery? If so, did you also suffer from hormonal imbalances? How long did it take to feel normal again?

Thank you for reading (I know it was long!). This has been really hard, knowing no one else who has been through this!

[debs43]

I'm bit worried I very bin putting off having blood tests was meant do months ago. I have the mErin and coil. In. But my tummys. My is getting big done pregnancy tests all negative impact get back aches and constipated I'm worried it's a atopice pregnancey has any one bin through the same