Hi everyone, I really just wanted some advice. I had my laparoscopy 5 weeks ago now, they found a lot of endo but managed to remove the majority of it. I was told I would have a follow up in 6 months time so yet again I’ve been left to deal with this alone with no help or support from any health professionals.
I booked a drs apt with my GP this week just to try and get some advice or reassurance as I have so many unanswered questions. I am not feeling any benefit at all yet since surgery, the past two weeks I’ve actually been in a flare and the pain has been horrendous and all of my usual symptoms are still present (nausea, exhaustion etc). My dr told me that because I have had surgery and it’s mostly been removed that I shouldn’t be in any pain or be feeling nauseous etc and it’s basically in my head and I should try counselling.
For years I have been fighting drs and consultants for answers and I have been told numerous times that this is in my head, I finally get a diagnosis and can feel relieved that this is real what I’m feeling to be told yet again it’s all in my head?
Can anyone else relate to after surgery still suffering their normal endo pain and symptoms? Will it start to improve and get better over time?
I feel so alone and just would love to have some support or someone to talk to that knows what I’m going through, thank you x
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Juney27
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No they didn’t say! That was literally all she told me and I was still groggy as I hadn’t long woken up, I am still waiting for the letter to come through that they send to your dr after diagnosis to find out in more detail but they haven’t sent it yet x
The Royal College (RCOG) standards require that you were given a discharge note with operative findings prior to leaving hospital but it will almost certainly be endo affecting the uterosacral ligaments - these run from the back of the cervix around each side of the rectum and attach to the sacrum. This is a part of rectovaginal endo. To tell you that you shouldn't be in pain because most of it has been removed is not really much help if the most significant endo that was beyond their scope has been left! This is deep endo and you would expect symptoms such as lower back pain perhaps radiating down the legs (most often the left), pain with deep sex, and bowel issues that are often misdiagnosed as IBS. This type of endo must only be treated in a specialist centre.
There are two levels of endo 'specialist' - those in secondary care and those in tertiary care. Which applies depends on the severity of confirmed or suspected endo. In secondary care consultants must have a 'special interest' in endo which means additional training in diagnosing and treating stages 1 and 2 and uncomplicated endometriomas (ovarian endo cysts). Ideally these should have sub-specialism in Reproductive Medicine and do laps a lot of the time.
When there is evidence of stage 3/4 and/or rectovaginal endo then referral is to a BSGE accredited endo centre and this can be by a consultant or direct by a GP. Such evidence will be confirmation of deep endo from a lap, scan or from the feeling of nodules on clinical exam. The best way of confirming that you meet the referral criteria for treatment in a centre is to get a copy of the actual lap report and any histology. They have 28 days to get copies to you and it is free. Guidance from the BMA can be downloaded here:
An important point is that commissioning is different between the referral processes. In secondary care these are routine referrals commissioned locally by Clinical Commissioning Groups (CCGs) and those to centres are commissioned centrally by NHS England. This is due to complex surgeries being expensive, so they would drain CCG funds quickly and also there are relatively few advanced excision surgeons and relatively few women with severe cases who require these highly skilled services. Services in the tertiary centres in England are called Prescribed Specialist Services, but few GPs seem to be aware of this.
Severe endo is defined in the introduction and includes these ligaments.
This is all quite complicated especially when you have an uncooperative GP who has no idea about all of this and it can get very difficult getting a referral that is your right. I run a UK endo guidance and support group with lots of files on all the treatment pathways based on UK guidelines and standards if you would like to join. That would ensure that you get an appropriate referral. Will pm you. xx
Hi Lindle.. I had endo on my pouch of Douglas and uterosacral ligaments and after my hysterectomy my right sided pain continued with bowel pains and bladder pain. I have been told it’s probably in my head as after the hysterectomy it should all be gone. I was treated at a specialist hosp by a top endo surgeon. I am waiting for my next lap but am scared it may not show anything as they keep saying I am imagining the pain. Could it be the hyst didn’t catch it all? Thanks
Wow! These symptoms match mine exactly. That’s so interesting, I will chase the hospital for my notes from the lap urgently. I honestly cannot thank you enough you really don’t understand what this means to me after being told time and time again that this is all in my head. Thank you xx
You're only 5 weeks since surgery, you're still healing inside, quite often it can take up to 4 to 5 months to recover and have an idea of what your new "normal" is. You should start to see improvements soon. I think I found at about 6 ish weeks I started to see improvements
My specialist said that our bodies cant tell the difference between removal of endo and endo therefore the pain and associated symptoms still feel the same for a while.
If you're not on any hormones then the stress of the lap can affect cycles, so they can be a bit weird for the first few months - mine were!
Due to the nature of the surgery and endometriosis in general we're expected to have a reduction in symptoms of about 50% once we're recovered. I can't rememeber where I read it but I know my specialist mentioned it and referenced something, I did print it out but I think I gave to to my HR.
You should be able to get your specialist notes from your GP, just call up and ask them. That'll help you work out what they've done and we can all help you figure out what that means for your symptoms.
I’ve had a similar expirience , had my laparoscopy in august, found endo, twisted fallopian tube which was stuck to my ovary and my ovary stuck to the pelvic wall, all freed up and endo removed, first period after surgery was great! Never thought id say that but no pain! Then it went down hill the 2nd period excruiciating ‘i feel like im going to pass out’ pain! Went for my gynae follow up last week, only treatment now is long term contraceptives ( though only gave me two options to try) to attempt to stop my periods all together, endo problems seem to be never ending 😫
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