pretty miserable experience at Lesley Regan's clinic

[kissmummy]

hello all, i thought i'd update you on my experience at Lesley Regan's clinic today. I have to say it was pretty miserable. I don't want to dwell too much on the negative aspects, as I think the work they do there is wonderful, and as recurrent miscarriage sufferers there aren't many places for us to turn. I suspect we were just unlucky, a) in who we saw and b) catching the clinic on what was obviously a very bad day. (they only had three consultants on duty, as opposed to the usual six, apparently.)
But i promised to let you know how it went so here goes.
In a nutshell, we waited a very, very, very long time ( in a very, very stuffy and crowded room, so packed that DH spent two hours perched on the corner of a coffee table..) and then eventually saw someone who rifled through my notes, stared at me, and then said: "What do you want from us?" in a voice that really was challenging me to explain why I thought there was any point in being there.
I was really and for once in my life didn't quite know what to say. I was rather expecting that they would suggest a course of action, being the experts, not me.... There was a long awkward silence while I thought to myself, 'well, what I want is a baby, but surely that's obvious?' In the end I asked a few questions, and they suggested re-running all the tests i've had done privately (not sure how much point there is but as we were there and they take blood on the spot I thought we might as well) and I suggested another investigation (yes, it was me suggesting it, not them) to which they agreed. But basically the attitude seemed to be that I am a bit of a lost cause/medical mystery and there wasn't much point me going there . I do totally understand that there aren't answers for everyone, but i did expect a bit more of a positive attitude. he didn't actually say a single nice or encouraging thing.
Finally, to add to my dismay, he dismissed the NK cell theory as "complete nonsense." He said there is "not a shred of evidence to support it."
. Of course he's entitled to his expert opinion and I was aware before I went in there that Regan's clinic is not big on the NK theory, but i thought it was a rather blunt way to express it, particularly to a patient who has obviously undergone investigations for NK Cells!
Even though I didn't have any unrealistic expectations of the appointment, I didn't expect to leave feeling as bad as I did.
I hope this post doesn't put people off from going there - i absolutely am not dissing the work that goes on there, which is amazing. both DH and I agreed to give blood samples for a research project they're carrying out at the moment.But i am not left feeling at all good about the experience...

kissmummy sorry you had such a poor experience. also sorry about your MC's i have had 6 MCs (5 early 1 late) and it such a hearwrenching time.

did they not discuss the results of the BTs you had taken privately? did you get a followup appointment? it might be worth calling the clinic and asking for more information/expressing your deflation at the appointment. IME though these appointments were always sort of a dissappointment for me i suppose i (in the back of my mind) was hoping for some sort of miracle cure/all healing answer to my troubles and tended to leave feeling deflated each time.
i did end up with a diagnosis and a low percentage of carrying another baby to term which in turn has heightened my disappointment in the visits (my fault though not theirs)

hi there panda sorry to hear about your diagnosis and thanks for understanding. I don't recognise your name so wonder if you are new to this board or haven't been on for a while.. you say you have a low percentage of carrying "another baby" to term so hope that means you have one or more DCs already? i do feel, for me anyway, that having a child (i have one son) makes it all a lot easier to bear, but it is still life changing, I think.
i can't imagine how hard it is for people to go through repeat miscarriages when they don't have one child to keep them going...
In some ways i'd almost rather have a negative diagnosis than no diagnosis at all - it would enable us to start coming to terms with the situation and deciding whether to go down the adoption route. With no apparent explanation except the NK Cell possibility, there is still the tantalising chance for me that next time, or the next time, or even the time after that, a pregnancy will work. And so we will keep going. did you get your diagnosis at St Mary's?

kissmummy - so sorry to hear about your horrid time - I have friends who had a similar experience to yours at that clinic. In the end they opted out as were finding the experience more distressing . Massive vote for Zita West here if you've not already tried them ...

i have been posting on MN for over 5 years now just name changed a few times and i tend to stick to the chat/parenting side of things mostly i have 1 DD who is 4 i have a condition called Lupus Anticoagulant which is a form of Anti-Phospholipid Syndrome. it causes blood clots to form in the placenta/blood supply to the baby which then causes MC it is likely to be the cause of my later MC (that was nearly 7 years ago now though way before i was diagnosed.) i had my treatment/diagnosis in Liverpool Womens Hospital and they have given me 75mg asprin to take for basically the rest of my TTC/pregnant life, i take 5mg folic acid and i was told to keep trying but i have a 25-30% chance of ever carrying another baby to term due to the level of LA they found. the good news with this is levels can fluctuate and are affected by diet and excercise so i am currently sorting that out (24lb and counting)
i agree that it does feel easier to deal with this because i have DD and i dread to think what state i would be in without her she was in the words of the consultant 'a true miracle baby, a fluke of nature who should, in all rights against my levels, not have survived past 12 weeks gestation' i am VERY lucky to have her

thanks for sharing your story panda and interesting to hear that others have had a bad experience at St Mary's. a 25-30pc chance of ever carrying another baby actually sounds quite a good chance. certainly worth keeping going for, if you can bear it. well done with your weight loss, that's amazing ~
poppy we went to Zita last autumn and we thought she was brilliant. she referred us to the Lister and we are being treated there by Yau Thum. We only went to St Mary's because an appointment finally came through on the NHS and i thought, what the hell, it is supposed to be THE place to go, and it won't cost us anything, so no harm in going along and getting a second opinion. I'm glad all our eggs arent' in one basket, so to speak. In America it's quite common to see two or three consultants for a range of opinions, though I can see why it's not advised here, not least cos you get one person saying the other is rubbish and that's just demoralising for the patient.

hi kissmummy sorry to hear you had a bad experience at St Marys. As you know i was there too yesterday and it was hectic, tbh it has been like that every time i ve been. Who did you see? I remember seeing a consultant whose attitude was like that towards me, not at St Marys may i add. No wonder you felt awful, it really does depend on who you get. If i were you, i would ask to see somebody else next time its your right. Although im very grateful for being seen at St Marys i do find it all quite daunting and inpersonal i suppose.Maybe its because they are soo busy, we just become another case sadly. Im very lucky they have found a problem with me which is more than likely causing my miscarriages. I have factor v leiden and so need to have heparin/aspirin during my next pregnancy. Im sure you feel in limbo land right now but maybe something will show up on the blood tests they are running x

Hi How disappointing for you. I haven't been to St Mary's but did suffer repeat miscarriages. Ours isn't straight forward as we needed to have IVF/ICSI due to sperm issues. I just wanted to say that if it wasn't for Yau Thum and the Lister I wouldn't have my lovely 18 month old DD. His attitude was very much that there is a reason for my losses we just don't know what it is, indeed we may never know, but let's see what we can find out and what treatment we can offer you. It may help. I liked that approach.

I had aspirin, steroids and IVIG. Bear in mind though that I was used to the IVF process so this didn't seem too radical or medicalised. I know it's not for everyone.

I have a 6 yo son too and inbetween 2 missed miscarriages and 5 early losses. My previous (fertility) clinic dismissed the NK cell stuff as snake oil and, along with other reasons, we switched to the Lister. Interestingly, my first clinic no longer think it is all snake oil and now do test and treat for immune issues. Funny that?

Have you read Alan Beer's book 'Is your body baby friendly'? It's quite good at covering this stuff.

Because there is no evidence that immune treatment works, there is plenty of anecdotal evidence and I'm a case in point. In fact I believe there is a wide scale trial underway in the States. I know this doesn't prove a relationship before some science bod comes on here and starts slating it all.

I do think that sour grapes can come into all this on a professional level as they can't offer some treatments and the NHS, quite rightly I guess, can't be seen to be offering unproven treatment. Plus they couldn't afford it. I know exactly what you mean about when 2 professionals can't agree and one slates the other you're left wondering who to believe.

Fwiw I think you are doing the right thing in getting a range of opinions. The one thing I did learn in my journey was that I had to be my own advocate and no one else was going to do it for me. I remember thinking, what would I do if a friend was in my situation and she asked me what she should do?

A friend of mine didn't go to the Lister but did see Mr Shehata at the Miscarriage Clinic. She had many many losses and now has a reason for them (not immune) and has a baby.

Regards.