Feeling confused

Hi everyone I never usually write on things like this but I'm a bit worried and a bit lost so I hope someone has gone through what I'm going through to give me some advice. I had an operative laprocopy (won't bother boring you with the history of how long it took to get diagnosed etc) about 5 weeks ago after the first two weeks I felt alright they found cysts and endo a lot around my bowel and ovaries. About 3 weeks ago I started work again I'm in the military so as you can imagine it can be hard work my first week was half days then and I had like cramping pain in my side would finish work and have painkillers and have a stupidly long bath to help. The second week was full day's first full day of 4 months of pain (this time round) so first day I finish work and ended up in agony in my side the second day they put me on an 11 hour shift and I could barely walk I was in so much pain by Wednesday I was throwing up my side was in so much pain I saw the consultatant who said its inflamed but he doesn't want to see me until December to see if the cerezette is working then I pay have to have surgery. But I can't live on tramadol and being sick with chills and be in pain missing work forever I just want to be normal again. I'm newly diagnosed before they were convinced I had kidney stones for years. Please any words of wisdom would be greatly appreciated

9 Replies

  • Hi I'm sorry you're going through this. You will find lots of support in here but what concerns me about your post is you say you are being sick and having chills? This makes me think you could have a post op infection of some sort. Have you checked your temperature yourself? I don't feel it is normal to get much worse after a laparoscopy. I would try and get checked out again xxx

  • Thank you for replying I have been to emergency gyni today they said its my bodies reaction to pain and that they don't think my cerezette is working so it's not stopping the endo

  • I would attend A&E to ensure you don't have an infection (chills are often a sign); as for being the military - I'm a soldier's wife and I know the heavy physical work you have to do. There's only one other wife who is disabled and she doesn't have endo. If you go to A&E and there's an urgency, you may get any surgery done there and I'm confused as to why you would have to pay anyway. If abroad, the army should either send you back to the UK or pay for the local hospitals to provide the care. I would speak to your welfare officer and/or your 2IC and see if they can assist.

  • I would go a and e definitely incase it's serious.

    Also look at your diet and Google endo diet.

    Diary, lactose and wheat can cause pain with endo. I know as I found out when I called an ambulance two weeks ago as I thought something had burst inside me I was in that much pain.

    I really feel for you xxxx

  • Thank you for your advice like I said above I did go to emergency gyni it's not an infection so that's positive.

    I'm so sorry to hear that you were in so much pain. I've looked at the endo diet I cut out a lot already it's hard to cut out food as in the military you don't really have choice on what food you eat.

    I hope your feeling better now xx

  • Hi - the most important part of your post is mention of a lot of endo on your bowel. This is likely to involve rectovaginal endo (deep between the back of the uterus and rectum) which must only be operated on by skilled surgeons in a specialist centre and fully excised in accordance with NHS guidelines. Was your lap done in general gynaecology because if it was they wouldn't have been qualified to touch the endo on your bowel so presumably it is still there giving you the same pain. When you refer to your side, which side is it? It seems clear you need more thorough treatment and this will vary according to where you are in the UK. What area are you in? x

  • Hi there I had my surgery in a private hospital in Portsmouth by a specialist. My pain is on my left side. The doctor I saw today was general gynaecology they said I need chronic pain management or something that was about it. I don't know if I should keep pushing it or if I'm going crazy I was expecting to feel a lot better after surgery not be in pain again. X

  • Hi - can you click on my name and look at my post on rectovaginal endo. The pain is usually left sided because the sigmoid colon, which is usually affected, passes through the pelvis on the left.

    It is still early days after your lap as it can take some time to recover but the important consideration is how thoroughly you were treated. All gynaecologists are referred to as specialists and all cover endo to some degree as it usually involves the reproductive organs, and therefore obstetrics, but when it has moved to the bowel it is outside their area of expertise and should be referred to a true endo specialist who has done additional training; these will usually be in the specialist centres. Even those specialists can vary considerably in their ability to treat complex disease. As you are in England you have access to NHS Choices and can see any specialist you want anywhere in the country and the standard contract for complex endo (involving bowel work) requires that this is dealt with only in a centre where a colorectal surgeon must be present or available. Your GP should be aware of this. It could be that if you had surgery with a general gynaecologist you may have had nerves disturbed that might take more time than normal to settle and may still have adhesions and deep endo that has been missed. You would normally need an MRI prior to surgery to locate any deep endo so don't know if this was carried out.

    Can you also look at my post on how to find a specialist and see if the surgeon you saw is one of those who works from the centre in the town you live. If you had been seen at a centre you would have a 3 month review and follow up for 24 months with quality of life questionnaires, but this won't apply to a private op. I don't know what follow up you will be entitled to under the original price of the op so will need to check this.

    But the overall upshot is that you may need some further surgery in a centre. It would be useful to have sight of the operative report to see exactly what was found and done. Your GP should have had a report but you will be entitled to this from the hospital as you were paying so I should get a copy. Get back if you need further help and feel free to send me a private message. Please try not to feel lost as unfortunately many women will need more than one op and you can ensure it is done in the right place now if you do find your symptoms don't settle. x

  • Shame I feel so sorry for you, you sound like you going through what I've been going through for nearly 4 weeks this time. I too take tramadol, paracetomal, diclofenic and diazepam and was told Monday that if this tablet combination does not work my doctor said they will admit me to gynaecology for pain and would get looked at quicker. Good luck Hun don't suffer qlone we all here to listen and offer support and if need be phone your doctor everyday the will give you an appointment xxxx

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