No endo found

[RhiannonT]

Hi everyone. Sorry to post again, but I've gotten myself quite upset over the past few days. I had my Laparoscopy 2 weeks ago tomorrow, and they never found any endometriosis. I know I should be happy they didn't find anything, but I'm just so confused. 😒😩 I have all the classic symptoms of endo but no periods anymore due to the Depo Injection. Even that is now not providing much relief. I had a Hysteroscopy and cystoscopy & DnC in September last year where they found a problem with one of my 'tubes' (my Urethra is narrow) but I need to wait to see Urology consultant in May to find out more-I was supposed to see one within 4 months but STILL not seen one. 😔 I've been with my partner 7 years, and I can't get intimate without rolling around in pain most of the time. I bleed every single time afterwards too, it was once so severe I had to change the sheets, blood everywhere. I'm seeing a private gynae on Monday for a second opinion and will ask to be re reffered To NHS if he can. I've not even been told if I'm getting a follow up gynae appointment. What's everyone's advice from here? I'm seeing a bowel consultant on April 18th too as I've got a lot of bowel issues, and I'm worried gynae thinks 'she's got bowel issues that's what's causing everything' but I'm just not convinced. I'm so upset. 😭😢

TIA

Rhiannon

X

[EndoJaz]

Its long winded trying to get a diagnosis..I have been told IBs and hernia which just wastes time. Now 2 years after hysterectomy for endo and fibroids they finally believe its endo again so waiting to have ovaries out. I have had an MRi to see if bowel involvement as lots of issues there. Write a detailed pain symptom diary and present it..thats only when they listened to me.

[RhiannonT in reply to EndoJaz]

Thank you. 😊 Hope you're doing okay. X

[weekari]

I'm really sorry to hear what you're going through. I had 5 years of it myself, which included a clear lap and being discharged with all the symptoms and nowhere to turn. The first thing you want to make sure is that you can trust the lap outcome. Do you know if your surgeon had at least a specialist interest in endo? Endo is such a complex disease and it can be difficult to spot, especially for a surgeon who isn't specifically trained in endo. It is now in the national guidelines that the surgeon should have this training, which unfortunately isn't often the case. You can usually find this out by googling their name- you can get an idea of what their area of expertise is.

Once you know this- then there are lots of other avenues for you to take.

It's likely worthwhile for you to get your medical notes. This is really straightforward and doesn't take long. Just google the name of your hospital and accessing your notes and you should get the info you need. You'll need to apply to any hospital you've been seen. And you apply separately to get your GP notes. Quite often you'll find out a lot more in your notes than you've been told.

I got a lot of help from another site and I'll message you with info about this.

Just don't give up- there are lots of options for you.

xx

[RhiannonT in reply to weekari]

Hi there.

Thanks so much for your reply. 😊

I'll definitely take a look at that site you suggested. I did have a look at my surgeon, he is a general gynae with no special interest in endo. He has a special interest in Obstetrics and pregnancy. 🙄🙄 I just feel totally let down, especially as I got no discharge notes or didn't even get told if I'll have a follow up appointment.

Xx

[Nursejo]

Hi.

Have they looked for adenomyosis? It sounds like it could be this. Hope you find answers soon x

[RhiannonT in reply to Nursejo]

Nope, not looked for Adenmyosis. How is this diagnosed? Thanks, me too. It'll be a long road.

Xx

[Nursejo in reply to RhiannonT]

Mine was diagnosed by internal uss. Think ct can show it too x

[RhiannonT in reply to Nursejo]

I meant to have an internal ultrasound last year but there was miscommunication and I never got one. Xx

[Nursejo in reply to RhiannonT]

Go back to Gp. They can organise it x

[RhiannonT in reply to Nursejo]

Thank you 😊 x