Miscarriage (I think) - no proof! GP useless!

(16 Posts)
Bakingtins Fri 29-Mar-13 14:23:57

smile sounds like you'll be sent to just the right place to get some help, you must be chuffed!

flynnster Fri 29-Mar-13 11:04:40

Just wanted to update my progress quickly....saw my rheumatologist yesterday (well his registra) and she was amazing. Finally someone who could sympathise with me. She is sending me to a clinic for people with lupus who are TTC but having issues or are pregnant and need high risk care.

She said I can get all the tests done there. Phew! I could have hugged her.

She also said she believes I have had 2 miscarriages but the pregnancies were never viable hence why I didnt get positives...she said it will happen for me and the clinic has a high success rate. The best news I could hear the moment smile

Thanks to everyone who shared their experiences and advice. Wish all doctors were like her!

flynnster Thu 21-Mar-13 17:05:13

Thanks for your wise words. I certainly do need to take a deep breath, find my game face and appear calm and assertive. And of course...keep trying!

I've written myself a little pecking order for who to try! I'm not crazy I promise ;) Think it'll help me keep a handle on things...
1. My rheumy - can he refer me to a gynecologist to check everything out.
2. If my rheumy cant, try a female GP who may be more sympathetic.
3. If the GP cant, going to see if my husbands private healthcare through his employer would cover me as his wife and get tested for allsorts there.
4. If that's not possible, await an appointment with the Antenatal Councellor that is currently pending.
5. Try calling the nurses at the gynechology unit to tell them I have had some changes since my last colposcopy and is this worrying enough for them to get in to see the doctor.
6. Give it another 6 months and go to my GP to tell them we have been TTC for 12 months with no success, can I get referred for testing.

What a challenge!!! I'm sure it'll be worth it though.

ChaoticOfShropshire Thu 21-Mar-13 16:37:54

Hiya, I did have to wait for a positive urine test before getting the injections, and it is stressful waiting. A couple of times I really felt I was and then had miscarriages very similar to how you describe, and I just had to think that it wasn't meant to be that time, hard as it was.

Try to be very matter of fact with the doc, lay it all out calmly and don't give them any opportunity to right you off as a hormonal neurotic. Explain that you would like all your concerns addressed and ask for a longer appointment so that you have time to talk.

Stay strong, and have faith that it will happen when it is meant to.

flynnster Thu 21-Mar-13 16:05:14

Thanks for sharing your experience Chaotic - I have wondered if Im producing too much or too little HCG so that it isn't recognised on a home preg test. Can I ask - as you were struggling to get a positive on a urine test, did they agree to do a blood test to confirm the pregnancy and then start you on the HCG injections? I am so happy to hear you soldiered on and got 4 babies! What an amazing story.

lyndie - Not been on the pill for over 10 years due to medical reasons so nothing like that in my bloodstream. My periods are usually month by month identical, 25 day cycle, cramps on the first day, heavy on first day and then get lighter and are over after 4 days.. the 2 times mentioned above were absolutely nothing like this. The first occasion it was so heavy all of a sudden with no warning and then the clot followed shortly after this...that was on day 2 when my period would usually get lighter by then.

I think I am going to have to learn to be calm and collected before my next GP appointment and fully plan what I am going to say when asking if I can investigated. There is one female GP at the practice...but I will try my lovely rheumatologist first as he has a fantastic bedside manner...he certainly does have the power to refer me on to anyone and cut through red tape, but its whether or not he thinks he should do something the really the GP should be doing. He may say just tell me to wait to see the antenatal councellor (hurry up appointment!).

lyndie Thu 21-Mar-13 12:33:21

Just a thought but were you using the pill or other hormonal contraception prior to 6 months ago when you started TTC?

ChaoticOfShropshire Thu 21-Mar-13 12:04:42

Hi, so sorry you are having all this upset. I have been through a similar thing, 4 miscarriages before 1st baby, and 2 after 2nd baby. I too, found it hard to get a positive pregnancy test and this for me was due to low HCG levels. This is the hormone that the home pregnancy tests detect to give you a positive. After my 3rd miscarriage they did do some investigations but they did count the 2nd even though I never got a positive test. In the end, after finding nothing definite they put me on to HCG injections twice a week for the first 12 weeks of every pregnancy, but you do still have to wait for the positive test, which is still frustrating and scary.
The injections worked and I now have 4 wonderful kids, aged from 13 to 4, it wasn't an easy journey but we persevered and were assertive with the medics. I would suggest you try an older female doctor in your practice, they will be at least more understanding.
Good luck with everything.

flynnster Thu 21-Mar-13 11:51:00

Not at all...i have to consider every possible cause. I didn't think lupus could cause menstrual clotting hence why i never considered it. I recently saw a hematoligist for my boarderline positive for sticky blood and she said the risks for me being just boarderline are DVT (legs, chest, head) so when i eventually become pregnant i'd need heparin after giving birth to prevent this (risk higher after giving birth apparently) but she also said the other risk for me is clots in the placenta which may mean i need heparin during pregnany...but only if i get recurrent miscarriage...but she said an asprine daily should be enough during pregnancy but she admitted it doesn't always go to plan!

I will certainly ask my rheumy next Thursday if lupus could be causing menstrual clots plus the other "funny turn" symptoms...maybe that would be a good starting point. If he says yes then at least i can get some advice. If he says it could be "other things" then I'll ask him if he can refer me for testing (rather than GP). I am just not happy that the GP doesn't yet want to investigate these clots and rule things out. Seems i have to play a waiting game.

willitbe Wed 20-Mar-13 21:21:16

I hope you don't mind, but I would dare to suggest you might not have miscarried. As you probably know clotting is related to lupus and so your description of late period and clots. Sound like that, with and early miscarriage you don't see any material even at 8 weeks it can be difficult to see miscarried sac in amongst the clots.

My mum and my sister both had negative tests while pregnant, but it was not on all their pregnancies. I think it is more likely that you just had delayed periods that contained more clotting due to the period being delayed.

Of course it is possible that you have been pregnant and had miscarriage, if so then you need to make sure lupus is as controlled ad can be and you might have to consider waiting to ttc til you have access to treatment prednisolone and heperin as soon as possible once pregnancy is confirmed.

I hope that you don 't feel I am bring negative here. I hope that you have a successful pregnancy soon.

flynnster Wed 20-Mar-13 21:18:26

FaceLikeAPickledOnion - that's horrible - people can be so harsh. I am glad it worked out well for you in the end and I hope we get that on our 3rd attempt.

Bakingtins - Lupus is so different from person to person, never the same effects or symptoms in 2 people with Lupus, so its very much treat as on an individual basis. My Rheumatologist thinks I should be fine to have a baby as my Lupus is considered mild...although they have said it can increase your chance of miscarriage. I am boarderline for sticky blood as a result of my lupus, so I am on a baby asprine per day...maybe they need to increase this to heparin injections - the antenatal councellor would definately be able to advise that (fingers crossed for an appointment soon). It could also be as simple as that I was having a mild lupus flare up when we last TTC...maybe the lupus got it this time. I hope you test negative...but like you say, no other symptoms so hopefully they just want to cross it off.

lyndie - The GP took a blood test for hcg the first time this happened, but the lab sent it back and refused to test it. I can go begging to my Rheumatologist I suppose...really all I want is the GP to take these clots seriously - even if I wasnt pregnant either time, I honestly thought the GP would be wanting to refer me on for testing to rule out anything more sinister going on with my cervix, ovaries, etc. as passing a large round the clot (about the size of an apricot id say) the first time and then a few months later something that looks like a placenta just isn't normal for me. Coupled with the other symptoms it makes me think something is going on - whether that be pregnancy or something else. It could be a coincidence that these symptoms have started during the past 6 months when we have started TTC. I think you are right about going to see another GP. One of the GP's will have to do their job and refer me at some point if these clots keep happening.

Thanks everyone, having a rant doesn't half help!!

lyndie Wed 20-Mar-13 20:48:17

I'm sorry to hear about your experiences. It is likely that even if the GP had referred you to gynaecology they would have sent back the referral as you don't have any proof that you were pregnant. I would go and see another GP though, just to see what they say. If it happened again I would see if you can get a blood test to check your HCG levels.

I don't want this to sound harsh - but how would you feel if you hadn't been pregnant those two times? Could another problem have caused those same symptoms? You sound convinced that it was a miscarriage but there may be other possibilities? I can see how desperately you want to be pregnant and I can understand the anxiety - good luck with everything.

Bakingtins Wed 20-Mar-13 20:38:16

The antenatal counsellor might be helpful. I'm being tested for lupus as part of recurrent MC investigations though I don't expect it to be positive as have no other symptoms. Worth trying the Miscarriage Association site to see if they have info there. Does it affect your chances if getting pregnant in the first place?

FaceLikeAPickledOnion Wed 20-Mar-13 19:54:30

Hi, the same thing happened to me when we were ttc. Late period, I hadn't actually done a test though. But then horrendous severe cramps, really heavy flow and I passed a lump of something, bigger than a clot, I was at work at the time. It made me dizzy, shaky and very upset. I rang dr's, Dr said without a positive test there was nothing I could do as I had no proof. I was and still am now convinced I mc'd. After the call to docs, my boss told me to 'stop being a drama queen and get on with my (very physical) work'.
Fortunately for us, I conceived a few months later and everything was great.
Go to see another Dr, op. I hope you conceive successfully soon.

flynnster Wed 20-Mar-13 19:44:02

Thank you so much for sharing your thoughts on this. Definitely agree with trying the angle of "abnormal cycles" to see if that gets me referred (its hard to think straight when you come out of the GP surgery angry/confused/upset) so glad I posted on here!

Not a bad idea to pay for a private appointment. Think I will have to look at that if I get really desperate. NHS GP's must miss so much by just dismissing people.

Huuum so looking at 2 years then if thats what the NICE guidelines say.

I have a longterm health condition which means I am waiting for an appointment with an Antenatal Councellor...I have no idea what this type of doctor can do, but apparently this is to discuss me getting pregnant as when I eventually do, I'll be treated as high risk. Maybe they knew I'd have problems with miscarriages (my condition is Lupus so more prone to them). Might try and speed this appointment up to see if they can help get the ball rolling on some tests.

Thank you again - I hope you get there too.

Bakingtins Wed 20-Mar-13 19:05:12

I'm sorry - that sounds very distressing.
I think the first thing I'd do is try another GP at the practice as he doesn't sound very sympathetic. I think you'll struggle to convince anyone it's a miscarriage if you've never had a positive urine test as they are so sensitive now, but there is obviously something going awry with your cycles. Perhaps it would be better to approach it from that point of view and see if you can see a gynaecologist for abnormal cycles?
I think the NICE guidelines are that you get referred for problems concieving after 2 years TTC, or 12m if you are >35yrs old.
I've just gone private for work up for recurrent miscarriage - I've had 3 at 8-10 weeks but since I had my son in between the first 2 it's not 3 consecutively. I'm 38, I have no time to piss about, so we paid £200 for a private appointment and as the consultant recommended treatment the GP has been happy to do some of the tests for us.
Hope you get a BFP and a sticky bean soon.

flynnster Wed 20-Mar-13 17:51:56

Sorry in advance if this is a bit of a rant!

I think I've had my 2nd miscarriage since TTC. We have been TTC for about 6 months now. I can't prove that either of these miscarriages were actual miscarriages as I never got a positive pregnancy test, all I know is that for the most recent one, I was 8 days late for my period and then I had a bit of a bleed, a "funny turn" (sudden dizziness, hot, sudden stomach cramp that didnt last all that long) and then the day after the bleeding got heavier and I then passed some tissue. This time it was like a placenta - it looked exactly like that, about 3 inches long (sorry if TMI). The time before this was very similar but it was a large round clot. My other periods in between are not like this at all.

It took me by surprise as I had been trying to trust the home pregnancy test, which was negative. So I thought maybe I was having some other probs like ovarian cysts or something else that could be causing the late period, so before I passed the tissue, I had planned in my head to go to the GP to ask to be referred to a Gynecologist to see if there are any probs.

However as it seemed to be a miscarriage, today I went to see the GP to tell him that what had happened. He agreed it could have been a miscarriage but no proof. I said that if I get 3rd "miscarriage" can I get referred to a Gynecologist and he said he doesn't think so, as he thinks I need to have each pregnancy confirmed by a urine test for each miscarriage. Neither have been.

This has upset me as I feel like if this keeps happening, what the heck am I going to do?!!!

I said what if I'm one of those people that never gets a positive on a home pregnancy test as I know of people who carried babies full term and never did .... he just looked at me like I was mad and said that's very unlikely.

Would anyone suggest me taking in a sample of the tissue in next time this happens?

Has anyone had similar experiences? Recurring miscarriages and/or struggling to get a positive urine pregnancy test when in fact you were pregnant?

Blood tests are not possible through my GP to confirm a pregnancy as I tried this last time and the labs rejected the sample.

Thanks everyone, feel like I've spoken to family about this but they've all been blessed in getting pregnant with no problems so they cant relate to what Im going through. The GP has been utterly useless!! So I hope some of you can share your experiences or even give me your thoughts on what I should do.

Trying to remain positive....

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