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Autoimmune conditions NK C: Raynaud's, Ulcertaive Colitis and IVF - Prednisolone

3K views 3 replies 3 participants last post by  cath J. 
#1 ·
Autoimmune conditions such as Raynaud's, Ulcertaive Colitis and IVF - AND NK cells

I have Raynaud's - not been 'tested' as I didn't know there was/is a test? However, my doctor suggested that it is likely that this is a condition that I have and this was suggested to me years ago. I get blue, sometimes white fingers and I am extremely sensitive to the cold, fingers and toes do not work well in cold conditions and driving is a nightmare in winter (steering).

I was never asked at my ACU if I suffered from any auto-immune conditions and even if I had, I wouldn't have realised that Raynaud's is an AIC, not at all.

This is my 3rd attempt at IVF, first one (I have PCOS) I got OHSS and bled before pregnancy test.
2nd attempt was stopped after stimms as I developed OHSS again.
This is my 3rd attempt and I have been taking DOUBLE progesterone (due to bleeding early, before) and I have still again started to bleed yesterday, 3 days before my pregnancy test.

I also was in agony before my first stimms scan and they said everything was 'calm' - but I had been bed-ridden at the weekend before this scan. It made me wonder; if it wasn't 'cysts' that were causing me this excrutiating pain, then it must've been my colon? ...I had a colonoscopy about 3 years ago to determine my urgency to defecate and sudden bowel pain/movement, but the test was inconclusive...

I mentioned this previous medical investigation to my ACU and they said they were reluctant to put me on 'Prednisolone' as there is no proof that I have Ulcerative Colitis (an autoimmune condition of the bowel) (Prednisolone is a steroid that treats auto-immune conditions such as ulcerative colitis (colon flare up and bleeding, ulcers can ASLO affect surrounding organs, ie: ovaries).

I can't go to for meals out or to friend's houses for dinner as the embarrassment of having to be bent over in pain and having to suddenly defecate is degrading. However, my tests were 'inconclusive' so I just have to live with it. I sometimes have to go without breakfast or lunch in case I have a meeting afterwards. It takes 45 minutes from me eating to be literally bent over backwards on a toilet... but my colonoscopy was inconclusive.

When it's cold, even in summer months, I have to drive with gloves on and can't bend or use my fingers properly. My doctor suggested I have Raynaud's, but I was never tested for this, just told.

I DEFINITELY have a bowel problem and I DEFINITELY have Raynaud's. Most ACUs actually dispense Prednisolone ANYWAY when they give out the prescriptions, but only to women who have had these conditions pre-diagnosed.
I am now bleeding and wondering where our next £4,000 is going to come from because NOBODY (again) has listened to me.

I think they should be giving me Prednisilone Cortisoid Steroid because my body is killing the embryos. GPs and Consultants hate us 'self-diagnosing' but I am going to play hell tomorrow at my pregnancy test. I had mentioned the possibility of having UC to them, before I started my stimms drugs and I have never been asked about my Raynaud's.

Really sorry I sound so angry - I'm just so really pi$$d off right now. I'm 37, nearly 38, hair turning grey, losing my fertile years to people who don't want to listen to just LISTEN to what I'm saying to them.

Good luck and best wishes to you all, I hope you can be stronger and firmer than me and I wish you all the best in your quest to become mummies xx
I must be... ^idiot^

If anyone has nay advice for me, it would be most welcome... what do I say to the ACU? How can I get someone to listen? It's not as if I WANT to look like Arnold Swarzennegger on steroids! LOL!?

 
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#2 ·
I am not sure where you are having treatment int he North,  but Care in Notts definitely are at the fore front of immune issues in the UK Dr George Ndwekue (I think his name is) might be worth a consultation.  Could you ask for immune testing? hoepfully you will be pregnant on testing  but if not there is evidence around.
Hvae youlooked on the immunology thread on FF for more advice as well

Good luck
L x
 
#3 ·
Oh, thanks very much for your advice! I really need to get tested, but it's a shame that these questions and test aren't asked before we apply for our loans from the banks! Thanks you so much, I will look into this. xx  ^hugme^
 
#4 ·
Angelbumps so sorry that you are going through such a nightmare. Unbelievably the majority of ACUs still don't wholly believe the reproductive immunology connection and therefore don't even mention it to patients. They just let people carry on having failure after failure which is awful.

I seriously recommend that you get Alan Beer's book - 'Is your body baby friendly?' (on Amazon) if you haven't read it already. There is a whole section about ulcerative colitis and Raynauds. I learned from his book that he used to get so frustrated that women were having to go through so much unnecessary strife and that healthy embryos don't just fail to implant repeatedly because of "God's will".

JJ1 is right, your best bet is Geroge Ndukwe who I am now under. Also there is a bulletin board/chatroom on the CARE fertility site and you may find some answers there.

However, God willing, you may not need to do anything further as you may get a BFP!!!

Lots of love and luck
C
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