Portland hospital worse than useless, help me formulate a game plan before I lose it completely!

(8 Posts)
Tollygunge Mon 08-Jun-15 15:51:17

Dear all, long sad story so please bear with me.
Had a first dd in 2011, when I was 30. Fell pregnant straight away, experienced no bleeding and had an absolutely straight forward vaginal delivery at term. Prior to this I had a termination in 2001 as wasn't in position to bring up child. I was living in India at this point and found out I was pregnant through missed period. Had termination in UK at six weeks by d and c. Had no bleeding with pregnancy either.
Fast forward to 2013 and I fell pregnant again. Experienced light implantation bleeding but was beyond thrilled to be pregnant again. Unfortunately a scan at 16 weeks revealed she had a congenital abnormality- severe congenital diaphragmatic hernia- and we made the heartbreaking decision to terminate, again through d and c. We had been trying for three months, and presumed we would be fortunate enough to concieve again. We were wrong, as it took 7 months. With this pregnancy I bled heavily from day one, was diagnosed with all kinds of placental problems and a massive subchorionic hematoma. My waters broke at 16 weeks, I developed an infection and again had to have a d and c. Began trying again, got pregnant in February 2015 and again bleeding before bfp and then a miscarriage at 6 weeks.
I was under the care of UCH and am being tested for clotting disorders but won't get to see heamatalogy clinic until July. Hoping to speed things up I saw Dr at the Portland- can you believe she was googling in front of me?! (From my phone at one point!) She had no idea what to test me for in terms of clotting disorders and also said 'I was v fertile', I'm obvs not as that was in February and still no pregnancy.
What do I do now? I can't stop thinking about another child, it's like an obsession, and I know it's unhealthy. I feel like I need to do something, but who do I go to see and where? Have tests at uch late July but am pretty sure it's not a clotting disorder and also imagine it will take months and months and months to get results, given I've been waiting for the appt since November! I have regular accu, take b and d vits and suspect I may have short Luteal phase. What now?! Found fertility gynaecology academy on line- are they worth a punt? Any recommendations? It's not really a repeat mc situation but instead repeated loss. Have been told over and over they're unconnected and I'm unlucky but no nearer to a child now than I was when we first had loss. Help.

Tollygunge Mon 08-Jun-15 16:19:15

I'm also almost 35 so time running out

Tollygunge Mon 08-Jun-15 16:56:28

Any recommendations?!

Chchchchangeabout Mon 08-Jun-15 17:04:20

Are private clinics like Zita West an option for you at least to start with for pointers as to treatment? I would also look for books written by specialists in the area.

worriedmum100 Mon 08-Jun-15 17:32:44

I'm so sorry for what you've been through. I know how it feels to be desperate to do something -anything - so that you at least have a plan or a diagnosed problem you can go about "fixing" . I can also understand the age panic thing but I suffered secondary infertility and miscarriage from 36- 39 so try not to panic - you are not in your late 30s yet.

Given that you already have an appointment for July I would see that through and in the meantime research potential consultants (assuming you want to pay privately) who have stellar reputations in their field. So that you can perhaps book an appointment so that you have something lined up to work towards.I can recommend Geoffrey Trew on Harley Street -he tends towards a specialism in uterine scarring though which is why I went to him and there may be someone more specialised in recurrent loss.

Given that you've had several losses and D&Cs it might be that you have some scarring that is making both conception/pregnancy more difficult (this happened to me as well as having undiagnosed endometriosis) . Have you had any other investigations such as an HSG (where dye is put into your uterus while you are x rayed?)

I really hope you find a way through. x

Tollygunge Mon 08-Jun-15 19:17:41

Thanks, hadn't really considered concept of scarring/ashermans tbh, but I am going to book an apt with this chap tomorrow. I feel like if it fails and we don't have another I can't look back in ten years and say I didn't try

worriedmum100 Mon 08-Jun-15 21:12:28

I completely understand.

I found Mr Trew to be lovely. Very approachable and easy to talk to (unlike some gynaecologists in my experience). Also sensible and methodical.

Before I saw him I emailed him (or rather the clinic) a letter setting out all my history in chronological order attaching any previous scans,blood results etc with a list of questions at the end. I found this really useful as I was worried about getting emotional and missing things out or forgetting questions during the consultation. He seemed grateful that I'd done that and it meant that he had some time to think about my situation before we went in to the consultation and we were able to get straight on to discussing a plan.

Good luck.

farfallarocks Tue 09-Jun-15 16:32:54

Goodness you poor thing, whoever you saw at the Portland sounds useless.

I would try Raj Rai at St Marys, he will test you for everything clotting related and specialises in late losses.
I would also try and be seen by someone who specialises in immune treatment which is still abit controversial and not everyone believes in this. Dr Shehata and the Zita West clinic will treat you for this.
You may find you have multiple issues as clotting disorders are often linked to immune or hormone problems too but usually there IS a solution and cocktail of drugs that can keep you pregnant (I am on about 6!)
Good luck

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