Post lap - no endo found

[merlin19]

Hi everyone,

I had my diagnostic lap on Monday and they didn't find any endo, but I did have adhesions around the ovary which had pushed it out of place. I didn't get very long to speak to the consultant at the time but she said once I'm healed from the op I should see an improvement. I have a follow up appointment with her in a few weeks and wanted any advice on what to ask. Does anyone have experience with just adhesions causing endo like symptoms (i'd never had any surgery in that area before so believe they must have been caused by some past infection or inflammation) or is there a chance that endo could have been missed? Before the lap I was expecting them to find endo on my bowel and in the pouch of douglas area because this seemed to fit with most of my symptoms, so I will ask the consultant exactly which bits they checked, and if there was any parts they couldn't check and if there's any possibility of there still being endo. I realise this is quite premature as I don't know if I'll still be getting symptoms once I'm healed up, but don't want to miss asking anything while I've got the chance. Any thoughts or advice would be really helpful

Thanks!

[Yazza]

It could be adhesions caused by a cyst that has ruptured? Also after reading lots of different research material apparently it is common to miss any endo on the rectrovaginal septum due to it's location hope this helps. X

[merlin19 in reply to Yazza]

Thanks. As far as I know I've not got/had any cysts, but it's good to know that it's worth asking the questions around missed endo. I'm hoping that it won't be relevant if I feel better once got over the op, but I like to be prepared, and can't bear it dragging on longer than necessary if there is the potential for it to still be endo.

Thanks again!

[riotsnotdiets]

I am going through a similar journey to you right now - had my lap at the end of May so I guess I am a little further along the road and hopefully your case will work out better than mine. Like you, I had no endo found, only adhesions tethering my sigmoid colon, caecum and appendix to my abdominal wall and the ligaments holding up my uterus. Unfortunately I was constipated on the day of the lap (TMI) because of tramadol, anxiety, and the pre-op fasting. So, my consultant decided that chronic constipation pulling on these adhesions must have been the cause of the issue (despite the medical history taken by another member of his team in my initial appointment clearly stating that I have no issues whatsoever with constipation, if anything I need to go to the bathroom more often during my period so this cannot be the cause of the pain). He divided the adhesions, inserted a Mirena, told me that I would be fine now, and discharged me without any followup appointment. 6 weeks later I am still in a lot of pain, have bled every day with clots due to the Mirena, Tranexamic Acid and Mefanamic Acid have done nothing I can tell to stop the bleeding.

My GP contacted his secretary to ask for a followup as I really ought to have been seen, unfortunately despite her asking for me to be seen at his earliest possible convenience, he gave me an appointment for 8 weeks later. As a result I ended up seeing a private consultant whose NHS post is at an endo centre. He acknowledged the level of my pain (apparently I shouldn't still need tramadol) but said that it's unlikely endo has been missed - he said that if it had been missed it would be very tiny microscopic patches which apparently cannot cause the level of pain I am in, as these smaller patches tend to affect fertility rather than cause pain. This contradicts everything I have read about endo in terms of pain and extent of endo not necessarily being linked but I guess he must know what he is talking about. He recommended an MRI scan to see if there is any deep endo which could have been missed and has asked my consultant to provide a report of the lap as well as any photos that could have been taken. Unfortunately I had to borrow money to go and see the private consultant so I can't afford to go private for an MRI as well. So, my understanding is that an MRI referral on the NHS needs to come from a consultant. I'm really not sure that my NHS consultant would be happy to acknowledge that there is any possibility he has missed something so I really don't know what my next steps are likely to be. I just want some answers about the pain I am in.

That's a very gloomy post I know, but I think I would just advise not to let it go. I feel much the same as you - what I don't want is to let it go, or go down the pain management route (pain clinic now being suggested to me) rather than continuing to investigate. Something must be causing me to be in so much pain and to bleed so heavily every month and before the lap my symptoms were textbook endo. I just don't want to be storing up problems for the future. Hope some of that might help at all?

[merlin19]

Hi,

I am sorry to hear of your situation, it must be very frustrating, but thank you for the detail and information. At the moment I am just uncomfortable from the op itself I think so I'll have to give it more time to see if I still have the symptoms and have my follow up to discuss in more detail what they did/found. Hopefully I will see an improvement but I'm being realistic in case I don't, I'm due to come on next week so that should tell me either way!

Thanks for the response and best of luck getting things sorted out x

[Alaine1]

Hi Riotsnotdiets

Any doctor can refer you for an MRI scan so please don't think you can't have one. Definitely make an appt with your GP and explain that you've borrowed money for the consultation with the private consultant and he's recommended an MRI scan which you can't afford to pay privately for (I got a quote for £300 for a private pelvic MRI scan which I got self refer for but the result had to be sent to a doctor). You probably won't get a scan done quickly on the nhs as it isn't considered urgent but you never know the GP might be able to refer you slightly further afield that has a shorter waiting time. Heavy bleeding whilst often seen with endo isn't necessarily so as some have normal bleeding. Also heavy bleeding can also be caused by a hormonal inbalance with oestrogen being too high which is why the mirena has been used. Adhesions in the area you have mentioned could cause considerable pain especially during a period. Please don't be too disappointed if endo isn't found as I know you were hoping it was the answer for you but like someone has already mentioned it could have been caused by a simple functional cyst bursting. It maybe that the IBS type symptoms you experience during a period were made worse because of these adhesions. I've had endo and adhesions in my right ovary and the pain with the adhesions has been awful. I also have adenomyosis alongside the endo and adhesions.

Merlin19 the info I've write above is also for you too and there seems to be the idea that you need to have had surgery to develop adhesions which isn't true. Also they check thoroughly for any other areas for endo. It's a good idea to ask at your follow up to see any photos taken but the areas you had the adhesions could produce symptoms similar to endo in the pouch of Douglas. It is again a very positive thing if no endo is found. Also don't expect to see an improvement in your bleeding with the mirena just yet as it's too early. Most gynaes and GPs will say you need to give it 6 months at least before you can say it hadn't worked so don't be surprised if you don't see any improvement just yet. Hope this helps x

[Alaine1]

Hi Riotsnotdiets

Any doctor can refer you for an MRI scan so please don't think you can't have one. Definitely make an appt with your GP and explain that you've borrowed money for the consultation with the private consultant and he's recommended an MRI scan which you can't afford to pay privately for (I got a quote for £300 for a private pelvic MRI scan which I got self refer for but the result had to be sent to a doctor). You probably won't get a scan done quickly on the nhs as it isn't considered urgent but you never know the GP might be able to refer you slightly further afield that has a shorter waiting time. Heavy bleeding whilst often seen with endo isn't necessarily so as some have normal bleeding. Also heavy bleeding can also be caused by a hormonal inbalance with oestrogen being too high which is why the mirena has been used. Adhesions in the area you have mentioned could cause considerable pain especially during a period. Please don't be too disappointed if endo isn't found as I know you were hoping it was the answer for you but like someone has already mentioned it could have been caused by a simple functional cyst bursting. It maybe that the IBS type symptoms you experience during a period were made worse because of these adhesions. I've had endo and adhesions in my right ovary and the pain with the adhesions has been awful. I also have adenomyosis alongside the endo and adhesions.

Merlin19 the info I've write above is also for you too and there seems to be the idea that you need to have had surgery to develop adhesions which isn't true. Also they check thoroughly for any other areas for endo. It's a good idea to ask at your follow up to see any photos taken but the areas you had the adhesions could produce symptoms similar to endo in the pouch of Douglas. It is again a very positive thing if no endo is found. Also don't expect to see an improvement in your bleeding with the mirena just yet as it's too early. Most gynaes and GPs will say you need to give it 6 months at least before you can say it hadn't worked so don't be surprised if you don't see any improvement just yet. Hope this helps x

[merlin19]

Hi, Thank you, that's really helpful, I didn't realise that adhesions around ovary could cause the symptoms in other areas, so that's promising news It'll be a case of wait & see now, so fingers crossed! And thanks for the support