Step One… laparoscopy

[Lunaloo123]

So managed to see the gynaecologist last week and after the exam, he almost straight away said he thinks I’ve got endometriosis or adenomyosis (never heard of it- googled now) which although a relief that I’ve finally been listened to, I am of course scared.

They have signed me up for laparoscopy to have a proper look which is great (still nervous but appreciative of being listened to)

But due to the examination, I have had excruciating pain, very nearly sick and bleeding lots. I’m having time off work… absolutely sick to death of this.

I’m grateful for being listened to, finally but I am still really fed up of this taking control of my life.

If anyone has any tips or have been for the op, I would appreciate the advice.

T.I.A xox

[Cocoacupid]

I had a lap back in April I was scared as it was the first time of having general anesthetic and my anxiety was extremely high. I was made to be put at ease and all my questions answered by a lovely nurse walked me down to the operation. I was scared of waking up on the table or not waking up. But they always are checking on your vitals. After the anesthetic goes into you they get you to start talking to them and slowly but surely you fall asleep was trying to fight the sleepy ness them next thing I know I’m awake and being told I’m in recovery. I went down for op at half ten in the morning by quarter to two I’m round from the op and going back to the ward for something to eat and drink as am ravenous. They allowed me to come round by myself they didn’t slap me to bring me round or anything which was brilliant. I was on the table for about an hour and a half maybe 🤔 as had an endometriosis drained and stripped at the time of the diagnostic lap. Now im on the list for my next surgery. Not sure on date yet but have to have a bowel resection and my organs unstuck. But I also have told my surgeon I would like a full hysterectomy. I’m 37 years old suffered pain since I was ten and the past few years have had pain to the extent I can’t function. That is even after having a coil fitted. I don’t have any children or a partner. I have a wonderful support network and I realise I couldmt even cope with a crying baby anyway. I made the decision and my mum backed me up as was in the room with myself and the gynecologist consultant . Basically in short I said to him that I would like a better quality of life and one where I’m not continually having medication for pain which in all fairness doesn’t even touch the pain at all. I’m also on the wait list to see the pain clinic as at times can hardly walk. Because the endo in my bowel is so bad I have to have that surgery first but because I had sepsis after my lap from a cellulitis infection he can’t risk doing a hysterectomy at the same time as the bowel surgery and also because my bowel could leak after surgery he doesn’t want too many wounds inside healing at the same time. Am just thankful that even though I was on Gynecology’s radia since 2022 it was only through a locum doctor and lots of a and e visits that they put me on the cancellation list for my lap. As I was fobbed off for so long. I even was asked did I want to be part of trial to have the lap quicker as the wait list is so long for a diagnosic lap about two years I believe on the nhs. But because I got to the state I did the locum speeded that up for me. When they realised it was deep infiltrated endometriosis from the op I was just relieved I finally had a diagnosis. They did say before the op did I still want to be part of the trial but I said no I had changed my mind due to the severity of my symptoms. So they were able to tell me what was wrong I didn’t quite understand as was still coming round from the surgery but later on was all explained with my mum there. The thing is they said that endometriosis can be painful with it being minimal but someone with more severe endo may not have any pain issues. As I have probably got suspected autism level one my pain levels are sky high. I’m more positive on my outlook though now I have a name to my symptoms. But for a long time had been fobbed off saying I had Ibs or a bladder infection or had gastroenteritis or accused of being pregnant when being sick all day everyday for ten days before finically getting anti sickness long term and anti diarrheoa tablets long term until after my up and coming surgery. Don’t settle for second best don’t allow people to fob you off I did for 27 years until I could no longer manage my daily living. I even had thought a lot more about suicide. Thankfully I’m listened to now. I will be thinking of you when you have your surgery. But please don’t worry as they are constantly checking your vitals all the the time. Now have had my first op I’m not so scared about being put to sleep for the next op. When you get a diagnosis set in stone it will one relieve you and two it made me think at least am not going crazy 🤪 as one doctor in a and e wanted me sectioned and the only thing he wanted me to have done was endoscopy to work out why I was being sick and only wanting to give me medicine to make me use my bowels which I really didn’t need. I said please listen to me I’m fed up of being sick. I said can’t you at least give me anti sickness to take home no was his answer and called psych to see me. Also he accused me of being pregnant when I had no boyfriend husband or partner. I said I didn’t want a pregnancy test as I knew I wasn’t as wasn’t even having sex as sex was too painful for me so I said it would be the second great birth after Christ. But they did one anyway even though I know my own body. Thankfully my own docs put me on anti sickness tablets as if I didn’t I would still be being continuously sick and probably would have lost an awful lot of weight. I just hated not being believed and not knowing truely what was going on. Now I know am a lot more positive and my mental state has improved. Take care xx

[Cailleach]

Your GP should be able to help you with symptom control -painkillers and something for nausea as well as medication that can reduce the bleeding. Did your Gynae not suggest anything? You might have to try a few different painkillers to find something which is effective.

You don’t say if you are having the lap on the NHS or privately so I don’t know how long you may be waiting.

Re your time off work it might be as well to get ahead of that by discussing your situation with your manager, if you are comfortable doing so. It shouldn’t be necessary to give your diagnosis only that you have been diagnosed with a condition and are doing all you can to find effective treatment. Sometimes it is easier to do this via Occupational Health, many companies will have such a service available to them. Consider if there are any changes that would make things easier for you to be present at work eg change of duties, breaks, working from home. Very much depends on what your job is of course,

Hope things work out for you, you have already achieved something by being seen by a Gynae and provisionally diagnosed x