For anyone who has EVER suffered a MC or infertility

[1sttimer]

Hi all,

I have been asked by someone I know who works within the fertility field to offer some feedback on my personal thoughts after MC. They want to basically look at what is missing for people after they have suffered a MC and look at ways of communicating this to hospitals, clinics etc - so I said I'd offer my thoughts - however I thought it might be worthwhile to get a more general picture from people rather than just give my individual account - so what I'm looking for really is all of your thoughts on things like, what help you could have done with but might not have got, any information you could have had that would have helped, how you felt about any after care or counselling you received. Were there any areas that you might like further information on in terms of alternative therapies, or diet, RMC testing etc - or on the flip side did you think that you were dealt with very well and were very happy with how it was all managed.

Obviously I wont be able to pass back accounts of people's experiences with particular hospitals or departments etc but general accounts of peoples experiences would really help. Feedback to improve the system can only be a good thing right?

If it helps, for example, I will be telling her that the actual hospital staff were fantastic but that after care was non-existent, I had no idea who I could talk to about what happens next. There were things that went on with my body post MC that I didn't know would happen and some help there would have been good. I will also tell her that I have spent a fortune on getting advice on how to make lifestyle changes for myself and my OH, having acupuncture etc to improve our initial infertility but that without having done that myself would have had very limited info on what to do in that respect other than looking online. I think the NHS would save themselves a lot of money if they gave basic advise on these kinds of things WHILST they are making people wait for IVF rather than just immediately saying 'you need IVF' without giving letting them help themselves in the meantime.

Anyway, you get the jist - I'd really like to go back to her and say I have got a good all round view from people of 'what they think would have helped' in the treatment of the subjects of MC and infertility as a whole if anyone is willing to drop a few notes down? xx

 

[Maximus17]

hey thats a great thread as this is something I raised here also. I had a MC about 2 months ago and I felt exactly the same, there was no aftercare, I asked for a support group or counselling several times, and midwives just never got back to me. I had an operation for the MC and afterwards different doctors came around and never told me that it wasn't ectopic. They said they don't know!, I had to go private and that doctors works in the same hospital was able to access my notes and told me that it was indeed in my uterus, I cried when I heard the news. It was some feedback at least. Even she said they should be able to tell the patients at least this information. The NHS staff looked stressed, tired and no time to spare. They just get the patients the op and than get them out the door. Also this is not related to MC but after my miscarriage op, while I was in the recovery room they gave me the wrong drug that was left over on the cannular and I nearly died. I think the aftercare issue is partly NHS is under staffed and over worked.

 

[Akua]

What would have made a huge difference to me would have been the ability to self refer to epau.

When I first had a pv bleed, I couldn’t get hold of a midwife to refer me. By the time I did, epau told me the nearest appointment was three days later. Instead of waiting, I chose to pay for a private scan. Despite having the scan results in my hand, I still couldn’t refer myself to epau and instead had to find a midwife to do it for me.

When I started miscarrying, I haemorrhaged at home. I rang epau and they said I had to go via a&e as a doctor was needed to decide whether I needed to be seen. So I had to sit in a&e for an hour, bleeding so much I had to sit on incontinence pads in the waiting room as normal maternity pads wasn’t cutting it and I was leaking through my pyjamas.

I just never understood why I couldn’t refer myself. I know my own body, I don’t need a doctor to decide that losing litres of blood isn’t normal...

 

[baby.3]

To be left sat in A&E while you know your losing your pregnancy is horrific! I can't even begin to imagine how you must have felt!

 

[baby.3]

My MMC was handled respectfully, up until shift change. I was sent home after medical management after being told by some very unsympathetic nurses that I had passed it all. These nurses were very young and most probably inexperienced with dealing with such situations. I found they lacked empathy, maybe additional training should be given on how to deal with a delicate situation.

Also, more information is needed on what to expect from medical management. I was basically told I would experience period pains and heavy bleeding. They failed to tell me that the pains would be contractions and that my waters would break. I know this is to be expected, but in the mist of everything I never gave it a thought. So when my water broke I momentarily lost it and broke down.

Finally, aftercare. I was given a leaflet on what to expect physically over the coming days, what to look out for infection wise but that was it. No information regarding counselling, or bereavement/grieving groups etc. I have an amazing support network around me, but I feel for those woman who do not and are left to cope alone

That is about all I have to add to the thread. This is great awareness and I hope something does come it.

Hugs to all those how have experienced a loss xxxx

Sent from my SM-G960F using Tapatalk

 

[Holsf]

I had 3 very early miscarriages but began to feel something was wrong I was referred to have tests but nobody ever got back to me and I had to ring and check to be told it was all fine and I basically had to just get on with it as I’d had a child so I could have children and it was normal I felt so alone and wanted some support or advice on how I was going to achieve my baby to my saviour I got my rainbow baby after self medicating with baby aspirin after researching the web wether it did help or not I felt like I had to do something as nobody was going to help me but myself. I can honestly say going through that experience was one of the loneliest experience of my life and I had to keep myself sane by using this forum to talk to others that had gone through the same thing as no other support was offered by the drs. Xx

 

[MoominGirl]

My experiences relate to infertility in general so here goes.

Our problems started when I came off the pill and after months of no periods I was finally diagnosed with a prolactinoma. Once that was treated and my periods came back, endocrinology were very positive about our chances. Experience was good both with the GP and the hospital.

After we had been trying for about 9 months with no luck, I went back to the GP for further tests as I was worried about any other hidden problems. Again they were very supportive and happy to arrange but I felt I had to do a lot of chasing particularly for blood results. Also the GP didn't seem particularly well informed about timing of day 21 progesterone which is something that seems to pop up on these forums time and again. Other than that, we didn't have any problems with the GP other than the waiting which seems to be the same wherever you go assuming it's NHS.

We were also seen at the fertility clinic which for us was a truly horrendous experience. The attitude of the consultant was shocking. My husband was basically blamed for all our problems (his motility was a bit low) despite the issues with me and we were told quite bluntly that we would never conceive without IVF. At no point was IVF actually discussed in any detail other than us being told repeatedly that we needed it. We were never informed about funding for our area. Nor were we told how to proceed with IVF had we wanted to or followed up by the clinic afterwards. We were also offered nothing in the way of emotional support and the consultant clearly had no concept of how couples are actually affected by infertility despite seeing these patients every day. It was truly one of the loneliest times I've ever experienced and I really felt I needed to fight for everything and find my own solutions all on my own. I was lucky that my husband was so supportive as I can see how infertility can make or break couples. Ultimately we just felt like a statistic and the quicker they could get us through our one funded cycle, the quicker we would be paying privately.

Despite what we were told, we have conceived naturally although it took just over 3 years after coming off the pill. I count myself very lucky but I will never forget what we went though to get here and I hope I'm a better and stronger person for it.

 

[phonixgirl]

Hey

My experience is about failed IVF (and IUI, to an extent).

We were led to believe each time that it was a picture perfect scenario. Yes, we were aware of the stats, but there was no reason it shouldn't work... yet it didn't. After the 2nd one I found out I had raised NK cells (a test I'd initiated) - maybe the first two might have been different had we known, but maybe not.

Each time when it failed we were just left to it. I could choose to come in and test in hospital or test at home. I had a chemical preg one time and HAD to go into the hospital to get told it was negative. That was the WORST THING EVER. I was crying my eyes out, the nurse wasn't very sympathetic and clearly just wanted to get on with the next patient. Meanwhile, in the waiting area were other couples and sometimes people even bring babies in... just to rub your nose in it.

We are told there is counselling and we used it once but she told us she was a temp and didn't usually do it. My husband hated it. I think men in particular struggle with the process and don't like talking.

I ended up being off work with depression a couple of years ago. It's finally hit my husband now and he's off with stress.

IVF itself isn't hard... The disappointment is.

I would love alternative treatments. My husband was sceptical but I had acupuncture the first couple of times and loved it (only stopped due to cost). I've had reflexology once too and would be happy to try other things. I think relaxation is key, so maybe mindfulness or meditation. I need to work at this myself..xx

 

[1sttimer]

Thank you all soooo much, this is amazing feedback and so helpful, and not always easy to recount so thank you. It's really interesting too - all the different accounts but sadly all relate to feeling generally a bit lonely and out on a limb with very little advice or assistance. I think it's the unknown that is so frustrating for people, and the clinical/detached treatment of what's going on, along with the lack of answers.

Ladies - I have to tell you that as well as feeding this back I've been putting a little plan together myself to do something about this. I really feel like I want my journey to mean something and other than my long awaited baby which I still believe will happen I want to do something worthwhile with it (maybe so that I feel there has been a reason for it, who knows) but for that reason I've been researching ideas on ways I think I can help women with infertility and miscarriage, raise awareness and generally just make the help and advice that IS out there more accessible. If I posted a few more sets of question and answer type things on here would you be interested in taking part in a little 'market research' for me?

 

[Akua]

Definitely happy to answer more questions.

One other thing I have a huge issue with is how hard it is to get companies to stop emailing you. Eg pampers, bounty, etc. They keep emailing me pregnancy updates even though I’ve unsubscribed, written to them to say I don’t want these any more, I’ve done everything I can think of and it really bugs me

 

[Sunflower1]

I think it would be nice if women over 40 weren't told 5 mins after they find out in hospital that they have miscarried that there is a 40% chance of miscarrying over 40. It's not helpful and it's deeply upsetting. Also, the nurse who spoke to me said I might have miscarried because I am disabled. Maybe a bit of sensitivity training would come in handy.


I was not offered any counselling. Plus a week later I received a letter asking me to attend an appointment in hospital. It turned out to be an appointment to take readings to accompany my 13 week scan. No one had notified them and it was sent out automatically. I was devastated.


I felt it was all handled a bit clumsily and I was left feeling that I was somehow responsible because I was old and disabled.


Also because I google stuff about pregnancy I am constantly bombarded with adverts for new mothers online. Plus Amazon has added a 'baby wishlist' option which I see every time I pulled down my wishlists - I think it's very very insensitive and I find it upsetting. There is zero sensitivity to miscarriage in the media.

 

[1sttimer]

Definitely happy to answer more questions.

One other thing I have a huge issue with is how hard it is to get companies to stop emailing you. Eg pampers, bounty, etc. They keep emailing me pregnancy updates even though I’ve unsubscribed, written to them to say I don’t want these any more, I’ve done everything I can think of and it really bugs me

Omg Akua and sunflower I am so onboard with this! I got a thing through the post the other day from Bounty saying my bounty pack was 'still' waiting to be picked up - I wonder why! I removed myself from their list and app also but clearly it hasn't filtered through.

I also got a reminder from my gp yesterday to go to the doctors today, rang them to ask what on earth it was for 'oh its your first midwife appointment' - I physically don't know how that has even been booked as a) I didn't register my last pregnancy with the gp only my miscarriage, and b) I'd have been 25 weeks along by now if I still had it. I can only think it was meant for someone else but one hell of a way to ruin your day! xx

 

[Akua]

I’ve had two emails today. One from pampers to say I’m 27 weeks today and that my baby can’t wait to meet me. The other from Emmas diary full of vouchers.

I didn’t ask for these and I just can’t seem to get rid of them!!

I’ve recently reported it to the bereavement midwife at the hospital to see if there’s anything she can do. I only ever gave my email to bounty to get bounty packs, yet they’ve clearly passed my address on to others

 

[night owl]

I agree with everyone else here the aftercare is virtually non existent, and something which happened to me which really annoyed me was when I started spotting at 10+4 and went to epau for a scan - the sonographer told me there was only a pregnancy sac measuring around 6 weeks and my own timings must be well out, I was trying to explain to her that my timings were absolutely correct and I had a positive pregnancy test over 6 weeks ago but she was saying I might be worrying over nothing and just not as far along as I thought, she just didn’t listen to me about my own timings which if she had would have been clear straight away I was having a miscarriage, and if I hadn’t been clued up about TTC could have given me false hope,

I’ve seen other threads were ladies have posted about being confused about measurements following a scan as sonographer has told them they are just not as far along as they think - the sonographer should question this more about when they got a positive test etc and make it more clear there is a chance the pregnancy is not progressing as it should

Thanks for taking the time to collate this information 1sttimer as you say hopefully something good can come out of it all

 

[MoominGirl]

Totally happy to answer more questions. I wouldn't wish what we went through on anyone and I know our experience wasn't nearly as bad as it is for others.

I try and be more open now about what we went through as I really want to get something positive out of it even if that's just helping someone who is struggling know that they're not alone especially if they don't feel like they want to open up yet.

I'm the sort of person who generally likes numbers and statistics but those relating to fertility just seem generally unhelpful. I remember reading something that said something along the lines of 'x% of couples where the woman is under 35 conceive within 12 months and y% will have conceived within 2 years'. It was my OH who really made me think when he said 'well that's nice but no one's asked us' so how overly optimistic are these figures?

These statements also very much imply that you're abnormal if you're not pregnant after a year and really abnormal if you're not pregnant after 2. This seemed to drive a lot of the aggressive pushing towards IVF as we went to the fertility clinic after about 18 months so based on the above we seemed to be deemed a hopeless case. I think this attitude puts needless pressure on couples who then get caught up in the idea that there's something drastically wrong with them when it doesn't happen right away.

At one point I attended the Fertility Show and the thing I took away most from it was just how many people were there and therefore experiencing fertility problems and also how big the market for fertility actually is.

Our NHS experience made us feel like freaks despite the fact they must see 100s of couples at that one hospital just for fertility issues.