my terrible experience at the recurrent miscarriage clinic this morning

[Stardust127]

Hi

I suppose I just need to rant, need some listening ears really. and also inform others of my experience so that they can be prepared for what a shambles it can really be. I’m really suffering, mentally. My husband and I had our 1st appt at recurrent miscarriage clinic today, after two consecutive losses in jan and Feb this year. When we got there, we got in the queue at the women’s health clinic, as per the letter indicated. The lady on the desk called out (to the queue) anyone here for a pregnancy scan? It appeared that all clinics had one general reception area. i of course stayed quiet while other women went forward to their scan. As if this wasn’t triggering enough, the lady then looked at me and said 'here for a scan?' i said no. recurrent miscarriage clinic' i had to say it twice. she ushered us over to a desk and I gave my details. She pointed us in the direction of the RMC clinic waiting area.

when we got there, two nurses said they’d need to do a pregnancy test. I asked why, tearfully , as I’m here for recurrent miscarriages. They said it just has to be done and they apologised on the behalf of their colleagues for what happened in the reception area. Turned out nobody even needed to do a pregnancy test. So yet another triggering incident for no reason.

they scanned me. I wasn’t aware I’d be scanned and it was daunting. Then the consultant told us we’d have to avoid getting pregnant until they’ve done the blood tests which check for everything , which will be on the 20th April. The reason for this is because they need to wait 2 months after the last miscarriage to make sure pregnancy hormones are all gone. So now I’m just not going to have sex until after that which will put a strain on my marriage. I know that’s not necessary but this whole thing is causing so much emotional damage that I don’t want to have sex now for the foreseeable future.

I completely blanked out at this point as I was so, so angry and practically in tears. Something was said about pregnancy loss counselling which I agreed to, and then I walked out. I couldn’t be there any more.

this was at Lewisham hospital just for reference.

this journey is terrible. I am very ready to completely give up. I am mentally unhinged because of this. We have a son and with him we got pregnant straight away so this is just heart wrenching. As if the miscarriages weren’t bad enough.

thank you if you got this far reading. I think I’m going to complain to PALS at the hospital tbh.

It must have felt very difficult to be in this sort of cattle market scenario when you are understandably feeling emotional. For the staff it is the stuff of everyday - for you it is not.

Sending a hug. I hope you will be able to enjoy some warm caring time with your OH.

Yes I agree, however they should have been more sensitive and have different clinic reception areas given the vast difference between the two clinics.

I don’t want to be anywhere near my DH to be honest. I’m glad they’ve referred me to counselling because I need it desperately.

DH is supportive but he doesn’t understand. He doesn’t suffer the way I do. I feel very alone in it all.

I think you are wise to accept the counselling. It is so sad to have had these losses, but if this drives a wedge between you and your OH this will compound that sadness.

I used to work in a Women's Hospital and on the ward there were women who had had miscarriages, women having terminations and women being investigated for infertility - all side by side. It was awful.

I am sorry that your clinic visit has been so traumatic.

Can I suggest that your approach to PALS speaks positively about what changes should be made? - they tend to respond better if they have some specific goal in mind that they can present to the relevant department. You will also have the satisfaction of knowing that your suggestions might help another woman in a similar situation.

It may be that your OH has his own sorrows in this situation - men often show little but feel lots. You need to be a team in this difficult endeavour.

Thank you for your reply and it’s interesting you say that because all I’ve been thinking about really for the past few hours is how I wouldn’t want other women in my situation to go through the same at that hospital, so my initial communication to PALS would be how they could, if possible, have more discreet and better yet separate reception areas for the recurrent miscarriage clinic and for the staff to be a bit more sensitive to the fact that not everyone is there for pregnancy and how it might be triggering for women who are struggling.

Hang on in there and I hope the counselling helps you. I went to a recurrant miscarriage doctor privately and I hated filling out the long form about all my losses. It's awful that the receptions are always shared witb pregnant people. In my case we found a reason, treated it and it worked. I wish the same for you. It is a hard time on any relationship. If you keep confiding in each other and hold each other close you will be OK

I had to sit in a room full of pregnant women waiting for routine scans to have miscarriages confirmed, twice. It's shit. There has been at least one piece of research or reporting calling for separate waiting areas but it hasn't happened, at least not in my hospital. I'm past childbearing now but I really feel for you, OP.

We had that in the early 90s. I had just had my third miscarriage, and was practically in tears, sitting in what was also an antenatal clinic. The consultant gynaecologist was less then sympathetic (not at Lewisham, as we saw him privately, but in another NHS hospital).

I was also on wards three times at Lewisham hospital (our local hospital) having had an ERPC, with women in for abortions. I complained about it to my GP. I also experienced it after an ERPC at another hospital, one local to my parents, due to miscarrying, while on a visit to them. (4 miscarriages in total)

Its appalling to hear that they haven’t improved their thinking in over 30 years!

Space and staff are severely limited in the nhs. The doctor you saw will be running antenatal clinics too. This is why it’s in one area. Another woman’s pregnancy has no Impact on your chances. I can understand why this felt awful but there’s really not much to be done. Do you want to spend energy being angry about this? How many losses have you had in total?

I used to work on a gynae ward back in the 80's, and I fought hard for the ladies in for elective terminations to be nursed separately from the ladies experiencing pregnancy loss. It didn't happen back then, and I am so sorry to see it's still happening.

Please take advantage of counselling, and sending you positive vibes for a future healthy pregnancy. My heart goes out to you.

My GUA clinic it’s called is opposite the pregnancy scanning clinic. So to enter you walk past all expectant mums and happy people holding their scan photos. I was there for a medical miscarriage, it was awful. I see the convenience of it all being close to the staff but to the ladies going through it, it’s bloody awful.

Mine was an appointment with a gynaecologist not an actual clinic and they did a scan, took loads of bloods. Sorry you had a tough time. The issue is that both clinics need the same skill sets, so same clinical space is used.

Agree with contacting PALS. I contacted them at another SE London hospital about a totally different issue. 6 months later a doctor called me to find out more. They apologized profusely and said they would incorporate my experience into their training.

I'm sorry to hear of your losses OP. I agree that counselling might be beneficial, not only for yourself but your DH too. I had no idea how our losses affected my DH till years later, because he was also putting on a brave face to support me.

I agree that the entire infertility/MC experience can be awful. Your experience sounds awful and I wonder if temporary staff or locums were working that day?

Can I ask how you got referred to the recurrent MC clinic after 2 losses? I'm not discounting your losses BTW x

After my 2nd pregnancy loss, I asked for referred to the recurrent MC clinic- and was told I'd need to have had 3 losses to qualify. This is despite that fact that I'd TTC 6yrs by that stage. After my 3rd loss, I asked again. Details were taken, but I was yet again told I didn't qualify. My 1st loss, was a TFMR due to patau syndrome, trisomy 13. Its a life limiting condition, and if I even made it to term, the baby would have died without hours of birth. Apparently, this meant I'd 'only' had 2 actual MC's and didn't qualify for the RMC! I then had rounds of IVF. Sorry to rant, but I never got to see the RMC, despite 12yrs TTC and 3 losses. I will never have any or my own living children now.

I'd suggest writing out a letter to PALs. Leave it a day, then re-read it. I also agree with adding things they could improve on. I can understand that gynae's see women at all stages of pregnancy, loss and infertility, but more compassion needs to me made to have either completely, separate clinic days/times or different waiting rooms. Wishing all the best going forward x

@Darkclothes 💐

Quite worrying that you say not having sex for a couple of weeks will put a strain on your marriage.

Omg times have not changed for the better, this really upset me on your behalf. This kind of thing happened to me over 30 years ago, sat in a maternity building waiting for compulsory counselling for Ivf all the pregnant couples coming in while I sat there feeling crap only to be told I'd cancelled the appointment which I'd definitely not. There had been a mistake made by someone, next time I refused to be counselled in the maternity unit.

If you are going to write to PALS try and focus on constructive criticism of what they could do better.

1. they need to send information with the clinic letter to explain exactly what to expect - if you’d been told you might need a pregnancy test, that you’d have an internal scan, that the bloods need to be a certain timeframe post miscarriage and that you need to pause TTC until testing is completed then none of that would have been upsetting on the day.
2. the reception staff need to remember that not everyone is there for happy reasons - if you’d been asked discreetly which clinic you were attending and then directed to the separate waiting area that would have been a much better start. There is unlikely to be anything they can do about ‘women’s health’ being one department.

It’s good that you’ve been referred quickly and after 2 consecutive losses, the guideline is three. Take up the offer of counselling and discuss what you’ll do if they don’t find anything - it’s much easier to move forward if they do find a concrete reason and there is some treatment available. We didn’t get anywhere with NHS RMC clinic and only got answers after 4 losses from the Coventry Implantation Clinic. It’s a tough time, look after yourself and try to keep open channels of communication with your DH, this is hard for him too even if he deals with it differently. 💐

Thank you so much everyone for your posts, it’s nice to have some support and know that my feelings are valid. My husband isn’t so understanding of my strong emotions, despite him trying as best he can. It’s different for women I guess. I’ve heard nothing from the hospital at all, not a letter or anything. I have no idea what blood tests I’m getting, just that I need to go in on the 20th April for them. It’s a shambles . @Miloarmadillo2 this is very valuable advice thank you. What you said about knowing stuff in advance is spot on and I will be mentioning this in my letter to PALS.

@Darkclothes I’ll write now trigger warning as this mentions living children .

i am so, so sorry about your losses and the lack of support you were offered. It is so upsetting that they disregarded one of your losses, it is all just so brutal. We also had a loss in October 2022, so we’ve had 3 but not consecutive as we had a baby last year. I went to the EPU in Queen Elizabeth hospital for the first MC and they told me I’d qualify for RMC and to go through my GP. (At this point I’d had 2 non consecutive miscarriages) GP told me I’d been given the wrong information and she complained to the hospital. I was then suddenly put on the urgent referral waiting list and I got a cancellation appt. They probably realised they f*cked up and didn’t want me to make a big deal so referred me as an exception. This entire thing has been a shambles & Lewisham and Greenwich trust are going to get a huge complaint from me soon.

I’ll write now trigger warning as this mentions living children

I think you said that in reply to my post. I'm not offended in the slightest of the mention of living children OP, its lovely you have been able to have at least 1 so far. No need for a trigger warning at all! Well, not for me anyways.

I only mentioned that I won't have my own children, because on similar threads where I've mentioned my multiple losses, I often get asked 'so do you have children now', 'Are you still TTC', 'I hope you have your rainbow soon' etc. x

Hi @Darkclothes , I did , I’m part of a miscarriage support group on Facebook and it is common for people to put TW at the starts of potentially triggering posts so I just do now out of respect, and to be sensitive because you never know if someone will be upset by the mention of new pregnancy, living children etc. Sorry that you’ve been asked before about those things xx

This is so awful for you, my DIL had v similar treatment at QE Woolwich
dont know if you have but if not insist on being put on progesterone, it has worked for her after 2 miscarriages x