Please help

[Greyhound18]

Hi,

I'm 26 and I had my first diagnostic laparoscopy yesterday on the NHS at my local hospital. This is following a previous diagnosis of adenomyosis and years of pain (been about 8-9 years of Drs visits). I have pain during sex, cramps during/ prior to my period commencing which can leave me feeling faint & that over the counter painkillers do nothing for. I've had irregular bleeding, hip pain and lower back pain.

Following the laparoscopy, I was provided a discharge letter which stated I had adhesions of ascending colon to side wall which it states adhesiolysis to ascending colon was undertaken. However, it stated no evidence of endometriosis seen at laparoscopy.

I haven't been provided a follow up appointment, and unsure whether the adhesions were biopsied. I've been given no indication as to why I'd have adhesions, as I haven't had any previous surgery or injury to the area...

Feeling really mixed emotions, and struggling with the lack of explanation for my pain. I'm unsure what I do now, whether I should push for a second opinion or even how I'd go about it, or whether I should just accept the findings.

Thanks

[Tangoandmax]

Hello, I’m currently two weeks post op and also have not been offered an official follow up appointment.

I did listen to everything advised after waking up however I think it’s completely normal to have further questions. I reached out to my consultants secretary with a list of questions, she then got the surgeon to call me and talk through what was found/removed etc. as my discharge notes didn’t say anything.

I think the only other reason for adhesions (non endo) would be pelvic inflammatory disease but if that was found they would have said. You’ve mentioned you were at your local hospital, and more often than not local gyne get things wrong in regards to endometriosis. I’m assuming they aren’t an accredited BSGE centre?

Absolutely get in touch with them for clarification on what was found/treated. I’m currently waiting for biopsy results but once supplied I’ll be doing a full subject access request to get copies of all information regarding my surgery. I think pictures are usually taken - if they have done the same for you, it’s possibly worth requesting copies as then you have the option to get a second opinion.

It’s also worth noting that there appears to be a difference with active endo. I’m not too sure on the science/technicalities of it all, but perhaps no active endo was found and adhesions were caused by historic endo?

All the best for recovery, it’s a lot initially but I’ve found by day 9/10, you start to feel more human again! Xx

[Angellouise]

I would go to my family Doctor and ask for a referral for a second opinion if you are not happy after all it’s your body. Good luck

[Frankatele299]

This happened to me, was your surgery done by an endometriosis specialist sometimes normal gynaecologist miss it . This was the case for me , they told me I had adhesions I spect a year trying to figure out how I got this , pain got worse. Eventually 2 years later I was diagnosed with endometriosis after my second lap , the crazy thing is the endo specialist looked at my pervious lap pictures and said endo was there.

[ClaudiaGrace]

Hi, I would definitely be requesting a follow up appointment to discuss the surgery findings and take a list of questions. It’s common practice for them to provide you with this.

[MrsPaddingtonBear]

Hello

It sounds likely that the adhesions are endometriosis. You should get a follow up appointment in 3 months time as a rule. Speedy recovery from the surgery

[Lily1986]

I’m so sorry you’ve had this experience, it seems to be a very regular occurrence at the moment. People are having scans that show disease and then told they don’t have it when having surgery. Only seems to be on NHS (sceptical me would say cost cutting technique maybe?) as when others have later gone private they’ve been diagnosed, often with severe disease.

Have you been shown photos of the surgery? If not, I highly recommend you obtain these and the surgery report either from the consultant or the hospitals legal department (they don’t just deal with claims it can be just to get copies of medical records). Think it’s called Access Request.

I do this all the time now having been left infertile and in constant pain due to being fobbed off and lied to for 15 years. The amount of stuff I’ve discovered about my body of which I was never informed is quite scary.

Once you have these I’d then request a second opinion from an BSGE registered specialist.

Adhesions don’t come from no where. Something has got to have caused the adhesions, either disease or injury.

Best wishes to you ❤️