Finally received my diagnosis...

[Natalex]

Trouble sleeping due to discomfort after yesterday laporoscopy so thought I would give an update!

So after 10 years (maybe more) I was told yesterday by my consultant that on first view of my uterus it was filled with new blood and lots of it, that I have indeed for endometriosis under my ovaries , uteroscal ligament ,on the outside of my bladder and my bowel. I actually cried with relief at finally receiving a diagnosis and I am lucky to have a fantastic consultant who is 100% supportive- I was told he finds it impossible that in 2011 this would not have been visible and can't understand how they in fact missed it.

Finally after years of people attempting to tell me it was in my head or women get pain and we don't know why I had someone who actually knows what they are doing but also has intreast in you as a person. I was told that from just looking at it on first glance the pain I must be in is probably even worse than I make out.

Unfortunately visibility of my bowel (probably due to codeine - flare up this weekend) I will have to return to have the endometriosis removed. I have a follow up appointment in two weeks with my consultant to discuss the options but was told removal would be the best option for me.

I'm fully aware endometriosis can cause issues with fertility but I was wondering if anyone could lend me some advice in regards to attempting to conceive before removal and the risk of removing endometriosis - if any to fertility?

I guess it's a strange mix of emotions at the moment I'm upset due to relief, anger at past doctors and also a little fearful of what's to come long term. Slightly hectic month as well with my wedding and honeymoon then operation straight after one another!

Any advice or experience will be greatly received!

Natalie x

[dawntildusk]

hi natalie.

its completely normal to feel the way u do. i have had a similar experience to u and have recently been diagnosed stage 4. i am going back for my post op follow up today to discuss further surgery.

i also shed a few tears of relief when they confirmed i did have it. it somehow made the battle ive had the last couple of years worth while. i am now a little anxious of what is to come but hopeful that i will soon be on the right track to being sorted.

i know it will be hard but now u do know try to put it to the back of your mind for now. concentrate on your recovery and then focus on enjoying your wedding day and honeymoon. x x

[Natalex in reply to dawntildusk]

Thank you for your post, yes it's a bitter sweet feeling.

Wedding and honeymoon were amazing it's just back to normality with a bang!

Hope your appointment went okay! xx

[KSvedenmacher]

Hi Natalie, congratulations on finally receiving the diagnosis. It took me 16 years to get diagnosed and even then it was by accident. It's such a frustrating road, isn't it? I had endometriosis on my uterosacral ligaments, Pouch of Douglas, peritoneum and bowel as well. The gynae removed as much as he could (this was done in Canada without a BSGE centre or anything like that) but left the endo on the bowel. I was lucky and was able to have two healthy children after, so for me the surgery did not affect my ability to have children, but then every woman is different. I also did extensive acupuncture during the times I wanted to conceive, which I believe contributed to my fertility.

[Natalex in reply to KSvedenmacher]

Thank you for your post!

Do you still suffer from the pain in the areas it was removed from?

I've heard acupuncture being used to treat symptoms of endo, maybe something to look into at some stage!

[KSvedenmacher in reply to Natalex]

My laparoscopy was 11 years ago and the pain has come back since. It has been back for years and years and I am now finally going to see a consultant for a second laparoscopy. I think the pain was gone for 3 years after the laparoscopy, since then it has gradually come back.

[Shell1967]

I'm so glad you now have some answers onwards and upwards for you now did they manage to remove bladder and bowel endo ? Take care Michelle xx

[Natalex in reply to Shell1967]

No, it's looking like this will be discussed at my review. Looks like surgical intervention will be the only option so will need to go back in again, think there was shock in how much endo was found considering the lap in 2011 "apparently" showed nothing! Just struck lucky this time with my consultant! xx

[Travelling]

Hi Natalie, I have extensive deeply infiltrating endometriosis. I have had it for more than twenty years but managed to have four children over that time, so don't give up.

Mine is causing problems now, especially with the bowel, and I am planning to have endoscopic surgery at some point. Are you aware that there are new guidelines for this type of surgery and it should only be done at a specialist centre?

Have a look online if you didn't know this, at bsge.org.uk .

You'll find lots of useful information there.

Best of luck!