Newly diagnosed : So I’ve been told I’ve... - Endometriosis UK

Endometriosis UK

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Newly diagnosed

BeccaB92 profile image
BeccaB92

So I’ve been told I’ve got it, I’ve got a a date for surgery for tissue removal and things are thank fully moving quickly.

My problem is I’m terrified, my diagnosis came due to unsuccessful pregnancies. Everything has happened so fast and I’m finding it so hard to cover up the pain now. My colleagues think I’m playing on it, my partner looks at me so differently too like he will break me if he touches me and my daughter has become my little nurse. I keep feeling like I am just going to explode but I have literally nobody to talk to because nobody really understands what it all feels like.

The pain is so unbearable mentally and physically I just don’t know what to do, any ideas?

Thank you

B x

5 Replies

Hi

I’m really sorry that you feel so alone with it. I’ve got diagnosed recently due to fertility problems. They give us 30% chances with ivf. My partner doesn’t understand why I’m so low about it, and he things most of it it’s drugs (I’m on prostap).

Counselling is a great way to go if you struggle. For you and your partner. Give it a go!

Big hugs Becca this site is a great place to feel support. Ive had no end of really kind people offer support, experiences and most usefully an ear. I’ve had years and years of this horrid condition. The past 4 years since my ectopic have been the toughest with little helping. My husband fluctuates from being understanding to frustrated. I’m having a tough day today as they’ve put me on Zoladex and I’m having loads of side effects. I’m sat outside Work building up the courage to go in. A lot of People’s work do seem to struggle and I must admit I try to go in no matter what as I’ve been told “it’s just a period”!! And I work with nurses and physio’s !!

You can do this I promise and hopefully the surgery can help. Any time you want someone to talk to we’re all here for you as I promise “we get it”.

Best Wishes Becca and big hugs 🤗

BeccaB92 profile image
BeccaB92 in reply to ccsmith

Thankyou 😊 I’ve had my surgery now, taking it out of me a little bit but fingers crossed this is temporary pain for some endo free time xx

Hi Becca

First of all - massive hug!!!

I was diagnosed with endometriosis in June this year and have also had the surgery to remove the tissue. I have suffered for 12 years with pain and as you say nobody understands what you go through, I fought with my doctors for a long long time to finally get somebody to listen to me.

The truth is - you cannot cover up the pain, I completely agree that it is mentally and physically exhausting. Unless they are going through it, they will not understand but you do need support around you, whether that be through family, friends, or through this web - it is really important.

You are NOT alone!!!

Talk to your doctor about what type of pain killers they can help you with and your options , I take codeine with paracetamol and ibuprofen, I have read that some people find yoga helps? Hot water bottles help too.

We all understand and know what you are going through!!!

Debs

xxxxxxxxxxxxxxxxxx

Hi becca.

How you feeling today? This forum is great for getting advice and just knowing others are in the same boat as it's a physical and emotional roller coaster ride having endometriosis.

What pain relief are you taking? Has anyone suggested you see the pain team? I found them a huge help in the months I waited for surgery as some days just sitting up was agony and with a 6 year old that isn't really an option. I have a little nurse to she has been a super star and we've spent many an afternoon watching dvds or painting nails so I can stay still with my hot water bottle.

I have found people don't know much about the disease and this is why they have no idea about the pain and how bad it is. Much to my husbands amusement I took the being brutally honest with people route and actually find people respond well to it, they all like the gory details and the photos to!! But it's helped people understand more what's been going on and people have been brilliant with last minute childcare or offers of dog walking.

The councillor idea mentioned is a good one as it's something you both have to come to terms with and guidance with doing that can be a really help. If you can't fit something like that in take some time out to talk about it as it's happening to you both and supporting each other is important but hard at the same time. Do you have other family or close friends?

Have you found diet affects your pain? There is an endo diet which some people find really helpful, I've found it helps so might be worth a try.

Please feel free to message me.

Take care cx

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