What should I do

[Ellenlar]

Hi eveyone,

Long post

TW

Bowel talk, emotional, surgery, blood, coil.

I had my first endometriosis surgery on the 15th December. They found and removed endo using ablation. (I did not want ablation, but they changed my surgereon from a endo specialist to a general gyne, but the traine doc did the actual surgery )

Since the surgery I have been experiencing cronic lower back pain, has anyone else experienced this?

I am deeply concerned as I am fully aware of how controversial ablation is. (I am not here to get into why its controversial, so please don't comment why, it was a personal choice, must information on Google about it).

I also feel very brushed off, and not cared for. Thoughout my entire process seeing the endo specialist, bowel endometriosis was highly spoken about and we even spoke about possible bowel surgery. Once my surgeon changed and I got to the hospital, when I spoke about the possible bowel endo, I was instantly shut down and told 'you have ibs'. Even though a gp, 1st gyne I seen and the endo specialist wanted to run scans to look into my bowel. As 'something is wrong' I felt I wasn't able to speak about my issues and it was "ibs", end of. They ended up not even doing any scans or checks on my bowel beyond the lap. I woke up in a large amount of blood and even the nurse worried, I seen the student doctor for about a minute and they said it was because 'i held your uterus to get your merina coil out' she seamed very awkward, shaking her head a bit and looked away.. and brushed off about it. (I have had a history of it moving out of place)

The first time I opened my bowels after the surgery, there was SO MUCH BLOOD, it was so scary and I bleed for about a week after, wound like blood not period blood... I have called my gp about 10 times, general gyne at the hospital about 6 times, my surgeons assistant multiple times and have spent the past 2-3weeks contacting PALS. I cannot get a hold of my surgery report. I was PROMISED it by my surgereon. (I have aspergers and need alot of details else I get distressed). I was told I would DEFINITELY get a follow up appointment, and my surgery paperwork. Eveyone I contact is not helping me. I am absolutely upset and angry,and in pain. My lower back has been so cronic since surgery (they used ablation on my pouch of douglas). I have NEVER experienced lower back pain until the surgery.

And my follow up appointment is none existant. And I keep getting ignored by everyone I contact, being autistic makes this even harder for me. Does anyone have advice or experiences similar? I'm so upset and emotional over it all. I made my planned endo specialist promise to not use ablation, and he said to me 'don't worry I understand and don't believe in the use of it either'. Then on the day of surgery the entire surgical plan organised was different (they said because of my autism if be completly in the loop on everything)...

I just don't know what else to do.

I am still having constant lower back pain, still have issues with my bowel and bladder.

Please help...

Thank you

I'd like to say I don't mean any harm or upset to any of the medical people involved, I am aware this is a busy scary time and they are struggling.

[Ellenlar]

Bump

[Claire_Alexandra]

I’m so sorry to hear this it sounds awful and like you’ve been completely dismissed which is the opposite of good care. I can understand how the change in surgeon and then operation plan has completely thrown you and you’re absolutely right to contact PALS for support and demand your report and a follow up. Have PALS suggested anything specific? My only other thought is if the GP can raise a complaint on your behalf too and demand for the report and follow up for you as they can’t manage the symptoms post op and you need specialist follow up as they’ll get a copy anyway. Might be worth checking the NICE guidelines too for follow up care I’m not sure what they say about that.

I’d suggest calling the endometriosis Uk helpline too as they’ll be able to offer advice and maybe even advocate for you I’m not sure.

I hope you get some answers soon and ideally that they offer another lap for the full investigation and excision with the original specialist but I know that’s not ideal having another op.

Thinking of you xx