Confused by results from hospital following Laparoscopy!??

[BeckyR84]

I have today spoken to the Secretary of the consultant who carried out my Laparoscopy on 7th February, I left hospital having been told they removed old endo scarring from the left side and also active endo mainly from the left, today the Secretary told me that old endo scarring had been removed and that endo had also been removed from the left ilio utero sequal ligament, I wrote it down exactly how she said it but I have no idea what this ligament is. I am already experiencing deep pain in my left hand side again into my hip and down my left leg, I asked where I go moving forward with regards to managing my pain and she replied with no further action to be taken as my endo has now been treated!! If it has been treated why am I in as much pain as I was in before and also I didn't think endo could actually be treated and no longer have it! Could anyone possibly help or advise on what I have been diagnosed with and whether I should be experiencing pain so soon!?? Thanks, Becky x

[sgalg2010]

No help on the diagnosis I'm afraid but I would strongly recommend taking this info to the GP and discussing with them. They should have some clarification for you and also have some ideas about the pain you're in!

My lap didn't do anything for me either pain wise I'm afraid I think it's temporary relief for some women and not for others!

Best of luck!

[JeanOsborne]

Hi Becky , endo on the uterosacral ligaments can cause sciatica pain. These ligaments go round the uterus supporting it. There are nerves that then join the sciatic nerve.

With regards to the pain it can take a few months after surgery to settle down. Were you treated by a general gynaecologist and do you know whether excision or ablation was used to remove the endo?

[BeckyR84 in reply to JeanOsborne]

It was carried out by a general gynecologist and I think it was ablation. The thing is they haven't even graded it or told me how bad it was, they have simply said it was 'mainly' in this area but that leads me to believe it was also somewhere else! Thanks for your responses x

[JeanOsborne in reply to BeckyR84]

Endo on the uterosacral ligaments is classed as rectovaginal endo and should only be treated at a BSGE centre by a specialist, under NHS guidelines.

[BeckyR84]

By what I have written above, what I have been told by the Secretary the place it had been removed from do you think it is the uterosacral ligaments, I literally wrote it as she said it, it didn't quite sound like she knew what she was saying and was just reading it off a letter which was being sent to my doctor. The consultant was not a bsge specialist he was a gynecology consultant as far as I am aware. I also asked if a rectovaginal examination could be carried out whilst I was in theatre but after he said there was no need to do one.

[BeckyR84]

How do I know this is what they have done? Literally all they have told me is what I have written above? They said they have nothing more to tell me other than they have treated it! My pain has crept up so much more since my op two weeks ago and I am worried that the op hasn't helped! What do you suggest I do moving forward?? Please help I've had enough x

[jadey18]

It's still really early days as well so try not to panic. It can take a few months to settle down after the operation it isn't instantaneous relief I wish it was because I had mine two days after you. I would search for this ligament on google or in a medical dictionary find out exactly what it is and what it does and research whether this should have been carried out more with a specialist clinic. On your six weeks check up with your consultant which they are obliged to give you I would then go armed with the information and fire questions at them. I wish you all the luck and hope it settles soon xx

[BeckyR84]

The consultant told the Secretary to tell me that there is no follow up appointment necessary!

[BeckyR84]

The consultant was in the same office but wouldn't speak to me and got the Secretary to relay the letter to me!

[Catlover3]

You can get copies of all medical records and see exactly what was done. I have had to do this numerous times. You will have to ask the secretary for copies and there may be a charge. I haven't had any problem getting them though.

[Hidden]

Was this an NHS hospital? If so, it might be worth contacting PALS and making a complaint. It really isn't appropriate for a secretary to give you this sort of information over the phone and tell you that's the end of it. You should be able to find contact details for PALS on the hospital website.

[BeckyR84 in reply to Hidden]

I phoned the day before and asked for the results but she said I would have to phone back the next day to speak to the consultant, I phoned the next day like she said but he wouldn't speak to me and got her to relay the letter to me, turns out the ladies above are right as I have seen the letter to the doctors and is says revealed areas of endometrial scarring and some endometriotic areas mainly on the left uteral sacral ligament, no further action to be taken. Treated with monopolar diathermy. I just feel like I went through all this for nothing when the pain is worse now than it was before. I understand I need to allow my body to heal but to have the exact pain as before but worse now has really dragged me down!

[Alicepirate in reply to BeckyR84]

Yep really good advice from other ladies they super knowledgeable. I just thought I'd say, I too had similar experience I had superficial endo removed from left uterosacrial ligament , rectum and left ureter and ovary my pain levels didn't change I was still in alot of pain after healing from lap but I also have adenomyosis which I think maybe the cause of some of the pain and I also now have a hemorrhagic cyst now so everything very blurry but yes I really sympathise my pain was not at all resolved by lap but it did improve after a few months back to original pain ....... sorry that not very positive but we all very different . I think everything is worse though painwise without proper information and when being treated 'soulessly' and irrationally by Dr's and secretaries .

I have found PALS to be really helpful but PALS seem to be joined to hospital so to make a proper complaint I have found an advocate to help me, it is a local charity but presume they have them all over the country.

PALS seem really helpful pushing to get appointments scan results etc

but also getting your hospital notes is really easy now under the FOI act if you look on the hospital website they will probably have information how to get your notes. They are really interesting anyway and useful i think to anyone to see their notes because with blood test etc sometimes your told they're normal but they are borderline normal if you see what I mean. Hope this helps sorry your having such a rubbish time

[BeckyR84]

Sorry, yes it is an NHS hospital!