Endometreosis and adhetions

[Jellyjumpers]

I had an ovarian cyst removed laperoscopically in mid november. During the op endemetreosis and adhetions were found and removed from the bowel. Last week i felt extreamly bloated had not opened my bowels in 4 days despoite taking lactulose and went to the walkin. They refferred me to hospital with a suspected appendicitis. The surgeons ppoked and prodded for 4 days and eventually discharged me after mobicol and an enimer. Given I was bleeding with the mirina i wondered if it coulddeither be endo or adhetions helped by being nill by mouth for ossible surgery.

It would sound possible - unfortunately endo can and does regrow, especially if any is left behind after an ablation. When you were in with the suspected appendicitis, did they talk about a second diagnostic lap? Were you given the mirena specifically to manage your endo?

Yes the coil was specifically for the endo. I was under general surgeons who only really seemed concerned about ruling out appendicitis. Gynie did not seem there strong point as they did not believe i was bleeding with the mirina and so did a CT scan to rule out kidney problems.

General surgeons in my case were very wary of commenting on gynae issues - I suppose that's understandable as it's a very specialised area. Are you still in pain, and is your bowel back to normal?

Mirena is hit and miss for endo management; from what you're saying it doesn't sound as though you're having a great experience with it. What would concern me is that if your gynae surgeon went in to remove a cyst and hadn't planned for full scale removal of endo, it's possible they wouldn't have got it all.

I think you need to talk to your consultant about a further diagnostic laparoscopy to see if any endo or adhesions are remaining or have grown back.

Yes I will contact the consultant. I do think the gynae was looking for the endo as before the ssurgery he had suggested looking into it as i said I generally get ibs symptoms but was extreamly loose on my period. In the followup he seemed to think the endo was quite localised and he felt he had remmoved it allaccept perhaps microscopic deposits.

In my first bleed after the surgery i was in a&e after not weeing for 24 hours. The ultrasound did not show retention. After painkillers i felt much better but i am not sure if this was not the antibiotics that the wallk in had given me earlier starting to work.

I am not sure i want another o so soon. The best thing i have found for the pain were the antiinflamitory supositories I was given the first time in A&E. Is this something my GP or consultant is likely to be able to prescribe so i can mannage at home rather than with morphine injections and IV paracetamol in hospital?

Since the surgery my bowels have been better than i can ever remember them being and up until the last week had been going once or twice a day. Not sure how things will now be as they want me to take mobicol twice a day for the next two weeks and then speak to my Gp.

Yes, your GP should be able to prescribe them or at least something similar. I too found suppositories more effective than oral painkillers for some reason. It sounds as though you should monitor your symptoms to see if things settle down and get back to normal, and also see if your bleeding stops; but if things don't get any better, push for another appointment with a gynae consultant.

Rthanks its just so. Confusing so it is good to have a plan of action. I have been discharged from the consultant so may need to get rereffered.

No idea why the supositories work so well. I asked for them in hospital this time but they seemed much more keen on pushing opiats.

Have you mannaged to get your pain under control?

Not liking the mobicol the hospital prescribed ijust got used to not needing the toilet 6 times a day to then take medication to do this to myself. I can only get a GPs appointment next friday so will need to keep taking it until then.

Not happy after speaking to a GP today, he seems to think endo pain is nothing. Today he said that it is only period pain which i should be able to cope with. Surely the hospital would not have given im morhine for “just perod ain”.

I have been told to take otc paracdtamol and ibuprophen. I have said the biggest problem is i am nausius and tablets can seem undigested when i vomit but have just been told to go to A&E if it reaccures i dont want to waste mine or the nhs’s time if i could mannage with a prescription at home.

The GP sounds a bit rubbish (I don’t like GP bashing, but seriously if you’ve had surgery which found and removed endo, talking about ‘just period pain’ is not on!!). Endo is known to recur.

Can you see a different GP? Also might be a good idea to keep track of symptoms so you can be very clear when you see somkne again.
Don’t worry about wasting NHS resources - I think this is really not your case!

Thanks. I have made another appointment with a GP who I feel is more empathetic. I previously spoke to the GP I saw today, as had an odd pain which I thought was a UTI. He was incredibly dismissive and just said it was the IBS (later diagnosed as bowel endo). The next day i was called into see a different GP who listened to the fact the pain was different examined me and sent me to hospital with a suspected appendicitis later diagnosed as a UTI.

My concern is that if avoidable i would prefer not to have to wait hours in A&E to potentially be admitted and have surgeons poke about for a few days.

I agree about the GP bashing. I thought when i was on the phone that I am glad he has been dismissive before as otherwise i may have wrongly come to the conclusion that it was that a man he did not understand or was uncomfortable with gynae issues.

He was also wierd when i saw him for a note after surgery. I had been having a lot of dihorhea and had been woken up at least 5 times through the night. Given it was a week after surgery involving the bowel i felt it was important to be checked. All he did was have a quick look and feel while i was in the chair.? He also said that he could not see the incitions. While I appreciate are small and surgically glued, one cut in particular was alittle red.

I no longer have a lot of.confidence in the GP i saw today. Would it be reasonable to ask to see another GP or practice nurse? The trouble with that is, for no good reason, hecalways seems to be the person with emergency appointments.

Entirely reasonable to ask to see a different GP. However if it’s always this one doing emergency appointments that makes it more difficult for you. You may have to either book ahead if you can, or change GP practice ..

Thanks, its helpful to have the reassurance that this is reasonable. I am not sure it can be true that he is the only person to do energencies but perhaps he is the least likely to be booked up.

Do adhetions typically show on a CT scan? The GP said adhetions could not be the problem as had not shown on a scan. However, for years i had MRIs ultrasounds etc and nothing showed up despite this being confirmed in surgery.

I just wish i was pain free enough to settle to sleep.

Sorry I’m not an expert but my understanding is that endometriosis is diagnosed by laparoscopy - so wild not necessarily show up on CT scan. However I’m not a doctor !

*would not!

I agree ass neither the endo or adhesions previously showed up before the lap.2

The dr also said as diagnosed privately i could not get NHS treatment for the endo. This does not sound right to me. With the ovarian cyst i f innitially had NHS scans and used my private medical cover once it needed removing. The nurse in the clinic said if under gynae at the local hospirtal this provided open access to the ward at my local hospitAl ratherthan having to travel 8 miles to a&e. If i cant have painkillers for home i would think i would get more apropriate treatment without waiting on a&e chairs and the travel if i could be seen by gynae.