Maculopathy, pre-proliferative retinopathy and want to be pregnant

[potlots86]

Hi All, this is the first time I have reached out to other diabetics in the 27 years since I was diagnosed so bear with me! I have been averagely controlling my diabetes most of my life and this year (past 6 months really) I have taken control a bit more as I am now 30 and would like to have the opportunity to have a baby. I started on a pump 5 days ago and the day after I did so, got a letter following my retinopathy screening advising I have maculopathy and pre-proliferatve retinopathy. I feel completely overwhelmed, terrified and like I am on a sinking ship. Add this to wanting to get pregnant and it really looks like it wont be an option for me. Any advice, stories or anything would be appreciated as I feel very alone in all this for the first time ever.

 

[noblehead]

Hi @potlots86 and welcome to the forum.

There's no need to feel alone as the members of this forum will give you plenty of support. The following website has some excellent information and advice on diabetic maculopathy/retinopathy, pay particular attention to what it says about controlling bg, bp and cholesterol levels:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Try not to worry and see what they say at your follow-up appointment, as for the pregnancy side of things I'll tag a member who always gives excellent advice on these matters @azure

Best wishes.

 

[potlots86]

Hi @potlots86 and welcome to the forum.

There's no need to feel alone as the members of this forum will give you plenty of support. The following website has some excellent information and advice on diabetic maculopathy/retinopathy, pay particular attention to what it says about controlling bg, bp and cholesterol levels:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Try not to worry and see what they say at your follow-up appointment, as for the pregnancy side of things I'll tag a member who always gives excellent advice on these matters @azure

Best wishes.

Thank you for your fast reply. I am also now concerned that the timing of my pump is poor as I feel my levels will and have improved dramatically and quickly and could therefore cause my eye issues to worsen further. Any thoughts? Thank you again

 

[noblehead]

Thank you for your fast reply. I am also now concerned that the timing of my pump is poor as I feel my levels will and have improved dramatically and quickly and could therefore cause my eye issues to worsen further. Any thoughts? Thank you again

If you read through the website above it does say that sudden tightening of bg control can increase the progression of diabetic retinopathy, so if unsure of anything do ask your Ophthalmologist/Diabetes Consultant.

When my own retinopathy was active and progressed to the proliferative stage I was told to make any improvements to my HbA1c over a longer period of time, I was also told to keep my bp levels below 130/70 to lessen the pressure on the eyes, at the time my bp was below 140/80 which is threshold but still started on a low-dose bp med to reduce it further, but it says all this and more in the link so do have a good read around it when you have some time to spare.

 

[azure]

Hi @potlots86

There are ladies here who have had eye issues and had babies. I'm tagging a couple I think might have some information - @Vick22 @Mrsass There was another lady here a while ago but I can't remember her name at the moment : (

In the meantime, if you look through the Pregnancy section or do a Search in this subforum, you'll see a few more threads on the subject. If you can't manage to make the Search work for you, just post here and I'll do it for you.

@noblehead has linked to some excellent information there and I don't have much to add, but I will say that improving your control slowly is most sensible as it reduces your risk of further issues with your eyes. So go gradually.

I am no expert of any kind, but I can't see why pregnancy wouldn't be an option for,you if you got good advice and support Speak to your consultant and get their help to make a plan on how to progress.

{{hugs}} You're not alone. Don't give up hope. X

 

[himtoo]

Hi @potlots86
welcome to the forum !!
sorry I cant help on the pregnancy part of things ( being a bloke )
but I can say that just trying to keep BG's as controlled as possible for the next few months by staying as steady as you can should stand you in good stead.

the pump should help to level you out over the next couple of months.

I have maculopathy ( have had injections ) and pre proliferative retinopathy ( had laser ) and I can still see fine and drive , so it is important not to panic -- just try your best to stay in control the best you can

 

[Jaylee]

I am on a sinking ship. .

Hi,

Yeah, tell me about it..
Prided myself for 40 years with not so much as a blot on the retinas.. Then a year ago got maculopathy..
Ironically, I did everything countermanding @noblehead 's link (thanks for that by the way!) tightened up control to further a career in rock & roll.. Yeah, I was in three bands too...
A regular check on prescription lenses through up an "anomaly" & I was referred to the hospital. Inspite of the "all clear" at the D eye scans 10 months previous... Without the opticians wanting to touch me until a thumbs up from the specialist. I lost my job in a goods in warehouse. Trouble with the shared PC monitor if I so much as wiped the dust off the screen I was accused of fiddling with the settings.. The paperwork was bad news too.. Don't worry. I found other work..

The treatment I have received for it. (Injections. No lazer...) has worked well. But what I have noticed is a correlation with my "musical activities" & any set back in the treatment requiring further injections in the right eye.. I sing heavy metal. It's aggressive & rough. & I have been told I look scary & about to bust a vessel.....
What I have noticed during a concentration of gig dates & rehersals is feeling a pressure behind the eye. A followup consultation & scan not so good. Another jab.. When I'm "resting" no pressure. Great scan, No jab needed & eyesight has remarkably improved.. The opticians had the thumbs up a few months ago...

Sounds like conjecture & waffle. But I've dropped one band & for a few months I've let gigs go.. Haven't bothered just concentraited on the eyes,bloods & the "day job..Though one drummer said (bless him.) lol, "you can still sing if your blind."

I may have to take up Jazz....

 

[potlots86]

Thanks all! Sorry I haven't replied at all, I had no updates

I have still not had any information about a follow up so still unsure of how developed these both are, suppose I will just sit and wait...

Just on what @Jaylee mentioned about pressure, I most definitely feel pressure behind my eyes while sat at my computer, is this my excuse to give up work?!?!