Post laparoscopy problems or normal?

Hi - almost 8weeks post laparoscopy and excision of Endo from fallopian tubes and bowels. Haven't been able to get to the bottom of what exactly has been done as my notes aren't on the system. I was fine for almost 2 weeks and then the cramping and back pain started and hasn't stopped. It fades and gets worse but it is always there. I have had 2 periods since the latest lasting 2 weeks with a week of that being very heavy, despite having the mirena for 9 months. At worst the pain can be shooting and involve my legs. My back and the contractions, have made me feel sick and a bit dizzy at times (not too bad but thought it might be relevant).

Been back to my GP who just said 'they probably haven't got it all' here is some tramadol. This isn't really very reassuring. Can't seem to get any advice from the hospital but can't carry on like this. We have cancelled a short trip and I basically do a bit, have a sit down and do a bit more. So tired all the time.

I am wondering how likely adenomyosis may be? Is this something that would be obvious during laparoscopy? I doubt it can be surgery related as I'm not unwell, no temperature etc.

Hate to whine, especially when people are struggling to get treatment but honestly don't know what else to do. At 46 I just think take everything away and leave me to it!

Would be so grateful for any advice. X

3 Replies

  • Really frustrating when you don't have a clear indication of what was done during surgery. Are you due to have any sort of post op? I know some specialists still do them, but other places don't see to offer them any more.

    I was in a similar position after my last surgery, and other than a few groggy minutes in recovery haven't been able to see my specialist since the op, so I requested an appointment with the endometriosis specialist nurse who works with him, which gave me an opportunity to find out what was done and look over my notes. At that point I mentioned adenomyosis (as I also have continued pain post surgery), and she pulled out an ultrasound scan from 6 months before that the consultant had noted showed signs of adenomyosis. Frustrating that I would never have known if I hadn't made a point of making the appointment and asking the question. Not sure where you were treated, but if it was am endometriosis centre there may be a nurse specialist you can speak to. Alternatively you can request your notes directly from the records manager at the hospital... but I gather there have been issues there.

    Unfortunately, adenomyois doesn't always show up on scans, and while it can sometimes be obvious from the visual appearance during surgery... it isn't always... so unfortunately it's often impossible to make a definite diagnosis till the tissue is checked post hyst. In some cases though, ultrasound/mri scans or the visual appearance can show indications.. so I definitely think it's worth chasing this info up.

    I think getting hold of your notes, and if possible speaking to your surgeon and having further scans would be hugely valuable, as right now you just don't have access to all the relevant info. Hard to say what the likelihood of adeno is without all the info, but once you have all the information you can look at it all logically, combined with your pain and symptoms, get input from your consultant and make an informed decision.

    It's also worth bearing in mind that it can sometimes take a few months to heal, and the first few cycles after surgery can be rough, so there is a chance you will improve. I really hope you do, but I think it's sensible to look into adenomyosis, especially if the pain continues or worsens.

  • Thank you so much for your reply. Maybe it is just post surgery pain. I think it is bothering me so much as it is constant. I feel like I am getting on the poor secretary's nerves, I would just love to know whether the uterus was checked, surely it must have been (it was an accredited centre)? Awake in the night with my back, now pain very low on the front left too. Seems like I stop bleeding and then everything just carries on anyway! Poor kids have had a really crappy summer with me like this :(

    Thanks again for your reply x

  • Hi J

    All stages of endo can be dealt with in a BSGE centre but the NHS Standard Contract for England covers stage 3/4 complex/rectovaginal endo and confirms that you are still under the care of the centre for 6 months since you had RV disease. The contract requires a 3 month follow up appointment with the specialist and one with the specialist nurse at 6 months when a quality of life questionnaire is completed. You are then discharged back to your GP if there are no problems. but further questionnaires are sent at 12 and 24 months. This is to ensure the centre's data is recorded that is used to maintain the BSGE accreditation. If there are still ongoing problems at 6 months then the centre is responsible for ensuring that any necessary further investigations are done either in the centre or in other departments. It is absolutely clear that a patient with complications must have individual follow up and failing to do any of this after surgery for severe endo is a breach of contract.

    It is covered on page 8:

    Furthermore, both Good Medical Practice and The good practice guidelines for GP electronic patient records require those records to be kept up to date for obvious reasons and really your GP should be chasing this aspect if your surgery is still not formally recorded and all procedures coded on your electronic record in accordance with the BSGE coding guide.

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