Do you feel your laparoscopy was properly looked into?

[ailis95]

Has anyone else had a laparoscopy with a general gynae clinic (not endo specialist) and feel it wasn’t sufficiently looked into?

I have been suffering for 10/11 years with endo symptoms (also have confirmed PCOS). I finally had a laparoscopy in February and had my post op phone consultation a few days ago - only to be told they found some endo on my pelvis which was burned away and that they didn’t feel it was causing my symptoms and dismissed it as IBS (have also tried IBS treatments in the past with no luck) and they have discharged me.

I strongly believe there my be some endo on my bowel as I suffer with bowel symptoms linked with my period and I can’t believe there is nothing causing the pain, bloating, bleeding etc.

My question is does anyone else feel they didn’t get anywhere with their laparoscopy or that they have had further investigation that found more than the lap with the general gynae?

Thank you

[Moon_maiden]

I’d ask for referral to an endo clinic, you’ve had the diagnosis for them to accept it. You could request a copy of your hospital records so you can read the notes.

At present I don’t know if some or all problems are endo or bowel. The endo is deep but as Zoladex isn’t helping the pain they are checking with a CT scan.

The problems you’re having still need to be investigated.

The GP can arrange certain things that can rule out other things.

[ailis95 in reply to Moon_maiden]

Thank you for replying, I appreciate your advice

[Moon_maiden in reply to ailis95]

How are you feeling at the moment?

[ailis95 in reply to Moon_maiden]

Not feeling great - severely bad back pain over the last few days. Had an ultrasound to check on a 5cm cyst found in my lap (not seen in the ultrasound a month prior to the lap) and they can’t see it again. Feel a bit at a loss with it all!

[Moon_maiden in reply to ailis95]

When I’ve had backache mid to low, I’ve had UTI, not every time, but a few. Maybe speak to GP about urine test to rule out infection. Doesn’t mean it isn’t muscular, or something else, but I can normally tell with myself as I do massage.

Ultrasound didn’t show either of my ovaries, they could see one on MRI and he only saw one at lap.

The fact yours was seen at lap is good. Maybe suggest to GP an MRI as well as referral. This can check on endo to a degree and will be useful for the gynaecologist. If I’d known more I’d have had one done before lap, gynaecologist thought just superficial.

The whole condition is very taxing and complicated at times.

[ailis95 in reply to Moon_maiden]

Thanks for the advice regarding an MRI, I think I will bring this up!

[Maxyy93]

I had a laparoscopy done under a general gynae last year and they wanted to insert the mirena coil but I opted for trying the contraceptive pill. To date, I’ve tried about 4 different types and with each one, I have had some form of bleeding (this was my main symptom before I got the official diagnosis of endometriosis).

I was told that these symptoms I am having can’t be caused by the endometriosis and that there could be something else to consider. I have a telephone consultation this week and I am going to ask to be referred to a specialist as my symptoms have not improved if anything, they have got worse. Hope you find the help you need. X

[ailis95 in reply to Maxyy93]

Thank you for your reply. I’m thinking of going down the mirena coil route but I’m apprehensive. I’ve had all of the pills - combined gives me headaches and all but one of the mini pills gave me bad ache.

It seems never ending!

How did you get on with asking to be referred? X

[Maxyy93 in reply to ailis95]

All the best with that. Please do keep us updated if you do decide to have the mirena fitted as I also was apprehensive hence I didn’t go for one but feel as though it might be the next step to try.

Thought I was getting somewhere with a referral but it’s still a battle. I spoke to my gynae who agreed that my symptoms weren’t getting better and was going to refer me to her colleague but I asked to be referred to a specific specialist centre. I’ve been going back and forth between the GP and the secretaries and I was informed they don’t have a referral and it can take up to 16-18 weeks before I get an appointment! So it’s still a constant fight which I can’t seem to see the light at the end of the tunnel. X

[ailis95 in reply to Maxyy93]

Wow it’s madness. It feels like a constant battle to be heard and taken seriously! It’s worrying how many people are made to feel the same.

I’ll certainly keep you updated if I do get the mirena, I already can have the prescription so will most likely go ahead.

I’ll keep my fingers crossed for you and an appointment happening sooner rather than later! X

[Linley]

Yes me too. Period and bowel disturbances went hand in hand with me. Maybe us ladies were not designed well having all our bits in one place. Was informed had Endo adhesions on ascending colon. Was put on Provera for 18 months after 1st Lap. As Moon_maiden has suggested get a copy of your medical notes take your next step from there. Good Luck

[ailis95 in reply to Linley]

Thanks for your advice 😊 I agree it’s a nightmare having everything so close and so many symptoms can be passed off as different things.

[Lofty1589]

The fact that they found Endo is enough to confirm a diagnosis. You can request your medical notes and stipulate specific things you need to receive - ie your lap notes. They should have all the info you need on those notes.

[ailis95 in reply to Lofty1589]

Thanks for your advice 😊

[RunningMum11]

Hello👋🏻 I have endo on my bowel and as a result suffer ibs symptoms during and after my period. It was diagnosed 10yrs ago by having a laparoscopy. I had the mirena coil implanted. The pain improved a lot. I think the lap is the only procedure that can clearly pick up on endo. I know ultrasounds don’t really pick up on it. The only other procedure I had after my lap was an mri. It was just to see how deep the layers of endo were on my bowel. So hope you get relief soon. Xx😊🙏🏻

[ailis95 in reply to RunningMum11]

Thank you 😊 I’m glad the mirena offered some relief for you! I may have to give it a go myself x

[am94]

Sorry to hear you’ve had this experience. I suppose the only good thing to take is that they did find evidence of endo and removed it.

I had my surgery August last year and had no follow-up, not even on the day. I’ve only taken what I know from my post-op discharge notes. Only one spot of endo was found and removed, there was nothing bowel related at all, but the bowel problems are what I suffer with most. I obviously don’t know whether they even checked for bowel endo as I wasn’t able to speak to anyone.

I am thinking I’ll go back to the GP once I’m able to get an appointment (it doesn’t feel urgent when they’re dealing with COVID) and see if they can offer any advice as to whether I can be referred for more investigations, hopefully to the specialist endometriosis clinic. But I do worry that it will be dismissed because they didn’t find anything on the lap.

I did previously pay for a private consultation and it was worth every penny to get the treatment I needed so if you are in the fortunate position to be able to do that then it may be worth it? I would definitely do it again.

Good luck! x

[ailis95]

I relate a lot to your reply! I only had a small spot of endo found in my womb but can’t get my head around that fact that the didn’t find anything bowel related. I too am concerned it was more a case of they’d found some endo burned it away and that’s the end of it. None of my symptoms have improved since February. Have you managed to get any further? X

[Whoisthis in reply to ailis95]

I’d go back find a specialist or go privately, burning endometriosis away is totally unacceptable, it’s needs excision and it needs to be sent to a lab for diagnosis. Sounds like you still need support for symptoms and they haven’t fixed or even helped with your endometriosis.

[ailis95]

Thank you for your advice!