lap not found anything

[Daughtersendo]

my daughter has had her second laposcpy today. She had excision 2 years ago where her bladder and bowel were effected and stuck to other organs.she was diagnosed with severe stage 3 edometreosis. She has been pain free for 2 years.however the pain started to return around 6 months ag, then at the start of May she had a serious flare up where she was in so much pain she could hardly walk. She has had difficulty opening bowels keeps going into bladder retention and recently treated for kidney infection

.so we were expecting them to tell us she had a lot of endo again, however the consultant has said there is no endo present.he has therefore said he does not no what is causing the pain. She is distort at the moment, think she had everything pinned on today, and now does not know which way to turn. I'm lost and dont know what to do next.Any suggestions would be really appreciated. Something must be causing this pain??

[Lindle]

Was this at a specialist endo centre?

[Daughtersendo in reply to Lindle]

He was a specialist endo consultant the same one who did the surgery 2 years ago. Only difference this time is it was through nhs rather than paying privately

[Lindle in reply to Daughtersendo]

So presumably part of an endo centre on the NHS as severe endo must only be treated in a centre. I assume she had a scan prior to this recent lap and it showed nothing?

[Daughtersendo in reply to Lindle]

Yeah she had a ultrasound scan and showed nothing up. I dont think the hospital is a specific endo centre but does end lap surgery her consultant advised her to be referred there. Its not close to home but we thought we were doing the right thing. Before the surgery no one would address the pain and bladder retention as they automatically put down to endo and would not explore anything else. Now he has not found any further endo I dont know how to help her get some answers

[Lindle in reply to Daughtersendo]

Could you dm the surgeon's name to me so I can check. x

[Salamander88]

So sorry to hear this. Some of the symptoms e.g. bladder retention that you describe sound quite concerning and not very endo-like to me, has she been to the GP about them post-surgery? (and I would ask for a different GP if getting fobbed off again or if you're not very confident in them). Urinary retention can have a range of underlying causes and she may well need a specialist (or specialists - e.g. not gynae but renal/urology and/or potentially neurology) to do some further investigations for what's actually causing these new symptoms. The indication from this recent surgery that it's not endo having recurred means that it seems very sensible to keep pushing for alternative explanations and rule out potential other causes. In case the pain gets really severe I would also think it's not an unreasonable thing to go to A&E or an urgent care centre and they might do some investigations there that could at least give a few answers.

Really hope you and she can get to some answers that make sense and hopefully treatments that can help her manage the pain/the symptoms etc. Best of luck.

[Avourneen]

Sometimes the urethas get damaged in a laparoscopy. It seems a bit strange that they did a lap when the scan didn't show any endo. Every lap comes with risks and causes more internal scarring. Also some surgeons mess operations up. I paid privately for my second surgery and the doctor made a real mess of it. Now I have tried three other srugeons who have said they are reluctant to help as the scarring internally is so bad.

It does sound likea good idea to see a renal/urological specialist about the bladder problems, it could be damange sustained in the lap or it could be something unrelated.i have problems with my bowels as the endo has grown right through them but have told an op is now to dangerous.But drinking a huge amountof water and some very mild laxatives (magnesium citrate ) every day really helps.

Also an MRI might show more ? I guess you could try a colorectal surgeon they could give her colonoscopy and some other tests on the bowel if drinking tons of water and gentle laxatives don't help.

This must be very worrying for both of you. I really hope you get somewhere and that it's not damage from the lap.I don't think that surgeons are honest about risks sometimes. Keep trying and see what other specialists have to say.

I really hope you get somewhere. Good luck.

[BloomingMarvellous]

As above. Flares can irritate old scar areas and it’s frightening indeed. There are other factors which might be helpful to consider. Nerves flare with this and with endo there is evidence showing the tissue is nerve rich and without the sheath protection so they are literally raw nerves hence the degree of pain. De irritating them is key. I’ve found particular supplements helpful and they also treat the leaky gut after years of UTIs being treated with antibiotics. Healing the gut is essential. I like the resource of @heal-endo to help me work through what might be my links. So for me it’s been Omega 3, Quercitin&Bromelein, Vit C, and decent Probiotic. Drinking plenty of water is absolutely necessary as is for me Lacto free. Inflammation in the pelvis is key to dealing with the flares and is pelvic physio ( try @corerecoverypt for info blog talk. Often the pain is from the pelvis area being overtight and dysfunctional from the pain and disease process. At the same time pursue the medics for possible deep endo ? Couragio

[Cotton_Candy]

This is very similar to what happened to me, I have stage 4 endo and had to repeat my lap after 2yrs and they found nothing. They had originally found endo on my Bowels and right by the nerves for my bladder in my 1st surgery.

I'm in multi clinics.. I'm seeing the Pelvic Floor Bowel Specialists, gynea, pain clinic and and also Urology. I kept going into retention as well and I currently have to have a catheter cause things got so bad. I recently did a Urodynamics Test which was amazing because it showed exactly what I was experiencing and the doctors were finally able to tell what was causing the retention and what they would need to do to fix it. That was the ONLY test I did that showed that there was something wrong and I've done sooo many tests and all the others said I was perfectly healthy so I would really recommend doing that type of test.

They pretty much said that women who are left in really bad chronic pelvic pain for a long time tend to end up with these types of issues... They think the pain endo really affected my pelvic organs and muscles.

I'm still figuring out the issues with my bowels... I hope this helped.