What should I do now? Feeling completely lost.

[Abby-A]

Hi all,

I recently had a diagnostic laparoscopy as I've been suffering with endo like symptoms for years now. Unfortunately, (or fortunately depending how you look at it, I guess) they never found any endometriosis.

On my discharge notes it mentions that my 'uterus was deviated to the right' but I'm not sure if that means before or during the procedure and I had a distended colon.

My number one problem that I'm beyond struggling to live with is pain during bowel movements. They're extremely severe; the only way I can describe them is labour pains (although I've never actually had a baby haha) but they're very intense, especially towards 'the end'. I can't walk for the first days of my period and when the pains start developing and getting worse, I'm on all fours and literally screaming. My mum was about to phone an ambulance once because she was freaked out but I had to stop her and tell her this is what happens every single time. I get other symptoms too but this is the main one.

My surgeon put on my notes that I didn't need a follow up and to 'consider referral to gastro'. It's been almost 3 weeks and I haven't heard anything from anyone. I'm going to call the hospital tomorrow for information but I feel completely alone and just brushed to the side and forgotten. I feel like my doctors aren't taking me seriously because I don't have some of the typical endo signs and now with the surgery showing nothing, I feel like they think I'm lying.

I really can't live with the pain anymore, I already take the pill back to back for three months straight as it's the only way I can have some normality for a while and not take more and more time off work. When it's all happening, I'm dosed to the max on cocodamel and ibuprofen to help with the pain - which creates the deadly cycle of constipation, bloatedness, etc.

Can anyone advise me on what I can do apart from following up at the hospital? Does anyone suffer with the same problems and can lead me in the right direction?

Sorry for the long post. Really not sure what to do or where to go from here. Just looking for a bit of advice. Anything will help.

Thanks x

[luthien]

Hi, sorry to hear what you've been through.

Was your lap carried out by an Endo specialist? I'm only asking because general gynae can miss endo, and won't always look everywhere, an endo specialist will be experienced enough to spot endo and will know all the places to look.

That's the first question! x

[Abby-A in reply to luthien]

He was just a general gynae surgeon. I don't have my notes on me atm but I think my notes were signed off by a consultant who has a lot of experience with endo but wasn't actually present for the op.

Thanks for replying x

[luthien in reply to Abby-A]

Ah I see.

You ideally need to have an endo specialist actually do the op for them to spot everything. The notes being signed off is just to confirm they make sense.

[Peebles2sarah]

Your uterus being deviated it actually normal and common so don’t worry about that. They normally wait 6 weeks or longer after surgery to have any follow ups because you’re still recovering up to that point. I would recommend seeing a gasto though and potentially having a scope done. It’s hard to determine with just a few of your symptoms but sound more gastro than gyno to me!

[zowzie47]

Hi when i had my hystorectomy my bowel was almost completely closed with scar tisue and the pain was like a red hot poker being stuck up my bottom had been told it was all in my head take these anti depressants