hi all

not posted on here for a while, but could do with some advice .....

have had 7 miscarriages, most recent was 3 weeks ago :( but my story is long and complicated ......

i was diagnosed with endometriosis a few years ago in the midst of my miscarriages, my hubby and i decided that we would not try to concieve again and we would focus on getting my body together trying to minimise the impact that endo was having on my life. 

having had various gyne appointments with little or no support (i appreciate this is symptomatic of endo) i had a course of 6 months progesterone treatment this year to try and eleviate the endo affects,  this was unsuccessful so after meeting with my gyne at the beginning of Sept agreed that i would have a mirena coil fitted at the same time as performing a diagnostic laparoscopy.

I came to terms with the fact that this would mean i was unable to have an accident and fall pregnant. within weeks i discovered i was pregnant (even had morning sickness) was thrilled but short lived as i miscarried very quickly (talk about rubbing salt in the wound). the EPU called this a chemical pregnancy , it makes me wonder if my other losses should be called this as i always miscarry within a week of finding out i am pregnant.

We were under the understanding that we had undergone all of the tests available to find out possible reasons for the miscarriages,  however the nurse at the EPU mentioned that she thought we should be referred to St Marys - has anyone had this happen? was it useful? I know we have had bloods and chromosone testing done at St Marys but we havent physically been there.

last Wednesday i underwent my diagnostic laparoscopy which sadly had complications and i am recovering from that surgery and booked to undergo another one on the 9th November.  they did insert the coil though so time will tell whether this helps my endo.

i appreciate this is bit of a ramble, but its been a weird time and just thought i would see if anyone has any advise or info they could offer me

thanks

Hello

I had to write to you after reading your post i wandered if it was me posting.....my name is Lisa,  i too like your self have just had my 11 mc two weeks ago, and suffer with Endometriosis have had the coil, injections, tablets, continuous surgery, several mc, counseling you name it. I understand totally how you feel...But i haven't been referred to St Marys,in fact never heard of it!.

I was referred several years ago for tests where eventually they found i had a blood condition know as "sticky blood", but they have never been able to find anything else, i have been on this board just over a week now and i must say that they have helped me so much to get through this time just the fact that we can always listen and understand how things are feel and support ..which can be great, i just wanted you to know that if ever you want to chat then great like i said i have been an endo sufferer and have tried most remedies!

I have managed to ask my nurses and doctors at the EPAU several things which had never occurred to me previously such as something called the anti d injection, and progesterone suppositories, asprin  spoke to nurses and now i am awaiting an appt in december for further testing, all arranged asap.

There is hope for you honestly..well like i said if you ever want to chat im here most days.

Sending lots of hugs

Lisa

hi Lisa

thanks for your reply

my name is Liz (Bizzie has always been my nic name)

just wondering if the coil helped you at all? i had the injection around 10 years ago didnt help, tried various pills and i am kinda pinnin alot on ths helping .

seems such a rollercoaster ride and i am so tired of it - having the laparoscopy go wrong is just the latest in a long line of what seems to be bad luck

I am quite a positive person by nature but i am finding this hard to continue to smile when its all just so hard, the mention of st Marys just made me cross! why has no one mentioned it before.

would be really interested to see what advice you might have re the endo or anything else.  I have changed my diet radically and when i stick to it that really helps

Thanks for your reply

Liz

Hi Liz!

If i am totally honest the coil was the worst thing i have had...i had read about it ll previously and my consultant kept saying about it and that mine would be fitted whilst i had lap done...5 weeks later i had to have it out without scaring you i was in agony with it felt awful was unable to walk let alone anything else had peresvered with it and followed the advise that the first 2 weeks woud be the worst but it wasnt for me..oncei had it removed i then had infections as it had ripped my lining inside i beleive and again 4 weeks later i was still suffering...sorry its not exactly positive is it!!.

i have had the hormone injections which bring on the early menopause but you can only have 3 injections within a 6 month time frame after the second injection the nurse consulted and told me they wouldnt give me another one...i was suffering terribly with all the side effects and motion sickness hot flushes being the worst couldnt even have my hair cut at the hairdressers!, i have had hrt tablets..but basically i live on daily doses of morphine, amitrpitalain, and mefenic acid..but they help!!!, the good thing with the tablets now is that because i have a pain doctor who i see regulary and he is fully aware of our need and want to have children these are safe to have during pregnancy..see finally positive!! :0), with endo they say the average is one operation every 5 years mine currently is 2 per year! i had my last op in may of this year 2 weeks after my last mc as the endo had caused cysts and abcesses to form on my ovarys unfortunately by the time the a &e department had decided what to do they had ruptured and started to cause septecimia!

My consultants have said about cutting different things out of my diet but like they have said there isnt a cure for it and honestly it hasnt helped me, im so like you putting on the smiley face sick of the pain and just get on with things but ive had enought this time around..feel selfish as i really want to be a mom, have a family even one child..ive even discussed the options of a full hystorectomy..but even that isnt a cure some ladies still have it and if like me it attatched to other parts it will keep growing.

I would ask your consultant to refer you to a pain specialist especially if you want to conceive..afterall the coil wont let you! there are certain tablets to stray away from Tramadol being one as it has been linked to mc but this was only told to me in may after being on them for 5 years daily, also you probably know there are some endo organisations out there but i have found i village and the ladies on here one of the best sometimes i just want to be a normal woman!!!

if you think of anything just say, its nice to know another woman in the same circs as me, even if it isnt the best situation.

thinking of you

lisa xx

blimey Lisa - what a story

dont worry youre not scaring me, one thing i have learned is this is not straightforward!

with regards to the coil did your side affects start straight away? i just feel crampy since having it fitted with bowel pain but i think (hard to tell re the bruising from the op) its better than before....

i am so sorry you have had such an awful time, its such a debilitating thing that has no easy answer!

i have had scepticima 4 times after MC's and i know its not pleasant

thanks for your advice

Liz

x