Wonder if I can ask your help and advice. I had a lap on Monday where they were able to treat my endo after 12 years of things building. I was so relieved that they finally found out what was causing all the pain and they were able to treat it. They used a diathermy to treat everything and fitted a mirena coil. Now I just feel so sore inside. It is like chronic burning pain and when I stand it feels like it's is all pulling downwards. I also hurt to pee and my bladder feels really sensitive.
I also feel really teary and wonder if this is all normal.
I am going to see my Gp next week to find out more as the surgeon came around when I was semi-conscious and so can find out more. I would be so grateful to hear any similar experiences or thoughts from those of you who know!
Big hugs x
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Samhaydock
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Big hugs. Treatment is a big deal and traumatic for your whole body even if on the outside there are only small incisions. It is common and very Normal to feel emotional after surgery.
You should definitely have been given adequate pain relief by your surgeon on discharge. I was given 2 weeks worth of dihydrocodeine. Call the hospital or else 111 for a urgent telephone appointment if you are not on top of the pain with what you were given.
I had bladder pain for quite a few days after my surgery so in itself isn't a cause for alarm I'd have thought it would be starting to show an improvement around now but we are all different. If you are worried then I would first call the ward and get advice to rule out an infection for peace of mind. Drinking plenty of water can help flush a mild one out was the initial advice I received from the junior doctor I saw when I went in with a similar concern to you and he was right. I didn't need the antibiotics I was given as a precaution but do get it checked out properly to be on the safe side.
The pulling feeling may be the coil which can cause pelvic pain. They usually settle after 4 to 6 weeks and thats the timeframe for hormone hell. Theu usually settle but unfortunately I was unlucky and mine continued to caus mild pelvic pain for months and after 5 i eventually had it removed and the pain stopped.
Do call your surgeons secretary on Monday and ask for a copy of your surgery report to be sent to you at home. It's usually done a week or so later. In my experience the GP start to be of less help at this stage and if you see the letter yourself first you have time to think of questions.
This leaflet describes the internal healing process in detail which can take up to 12 weeks. I wish someone had given it to me sooner. I was expecting to be fine after a week but needed 5 weeks off to recover in the end . Just take as long as you need to and build up strength gradually. centerforendo.com/is-my-end...
Were you treated in a BSGE centre?What grade of endo did you have and where?
Thank you so much for your reply and that my link! So useful and it all helps hugely. I spoke to my GP a couple of days after my lap and he said to come in next week when he would hopefully have the letter from the surgeon and we can go through everything, but didn't think to ask for a direct copy. That is great advice and will definitely sort that.
I don't know what stage my endo was at or where it was located but can guess. When the surgeon came to visit post-op, I was so woozy, so remembered 'diathermy' and 'treated it' but little else, and certainly didn't ask the questions I wanted to. The pre-op pain location and post-op bruising and the location of the cuts match up and are very low down in my tummy. I definitely had bladder and bowel pain before and so wonder if they have treated the endo on these organs and that is all healing too. For now my Gp seems on board and helpful but will heed your advice and keep as proactive as I can there. I wasn't treated at a BSGE centre but at Torbay hospital. Think my nearest is Exeter.
Thank you so much. Really, really does help. Xxxxx
Glad it helped. Xx I went through the same thing after my first lap. They don't prepare you all that well, I guess they don't want to worry you. I found that pdf a godsend. Suddenly lots of stuff made sense.
You mention your bowel. You need to find out your diagnosis of severity and endo type and it's location. If you only had superficial endo ablation is often used, and it can be treated by a generalist.
However General gynaes are not meant to be operating on bowel endo or deep infiltrating or other severe grade cases. If you had this you should have been referred on to BSGE specialist centre where the surgery is done by multidisciplinary teams with additional advanced laparoscopy excision training. This is specified in the NHS contract and is to avoid incomplete endo removal procedures causing the need for further procedures in the future.
If you discover this happened to you a list of inappropriate treatment is being kept on the endo revisited Facebook group.
Don't get me wrong some GPs are great, and perhaps others have had a different experience but i found over time they are genuinely "general practitioners" who know a little bit about a lot of the human body, so have breadth of knowledge rather than depth. Most will start to struggle with the detailed ins and outs of an obscure very specialist disease like endo, though they can help explain terms.
After nine months I definitely know more about endo than my doctor now. Mine was great initially in diagnosis but last time I went with zoladex side effects the very same lady wrongly told me I had depression refused to listen and fobbed me off.
In my opinion you need to drive your own treatment plan and take control of it to get the best outcome for you.
My god, that link regarding post-op recovery is fantastic. I had a horrific time after my last lap and part diathermy/part excision. Period started 2 days later and I was screaming in pain regardless of codeine, tramadol and anti-inflammatory. I basically came to all these conclusions myself but it is so good to actually read them. The suggestion of 3 months on the pill to hopefully prevent periods during recovery time is exactly what I suggest to others after my shocking experience. I know everyone is different and surgeons won't want to frighten anyone prior to surgery but honestly I'd have felt a lot less scared if I'd had this explanation laid down in front of me. I know it's from a US site but I'm wondering whether Endo UK would allow it to be a pinned post or if they would post something similar. Going off the amount of posts I read on here where patients are very scared something is wrong after surgery I think it would be so helpful. Thank you for posting the link! Xx
Why oh why do they tell you what was done while you're still half out of it?? I had exactly the same along with many others. Whenever I have a lap again I'll refuse to leave until they've handed a report to me in writing. Not much help to you now though.
It sounds like your gp is being helpful so yes go see them when they receive your report and go from there.
Regarding bladder pain, it's quite likely it's from the surgery and will calm down but do ask your gp to do a UTI test (and for it to be sent off for a culture! The amount I've had that shows nothing when done in the Drs surgery is ridiculous. It needs to be sent off to the lab). Infections do sometimes happen after surgery.
Don't underestimate what you've been through. They have a way of really playing down the procedure and yes for some it can be plain sailing. Everyone reacts differently, everyone has different organs involved and the amount that's been burnt off. It's totally normal to feel very emotional. Anaesthetic alone can do that along with the physical and mental shock your body has gone through.
Some fantastic links have been posted. I hope they help you. In the meantime, while waiting for your gp appointment do phone them and ask for sufficient pain meds. For instance, I was on 60mg codeine, paracetamol and ibuprofen for a good few weeks, topping up with tramadol when it was really bad. You can take all these together if it's very severe. As ever, heat pads help too.
Hi im glad i came accross this as i had my lap tues! So were lap buddies.
I have this constant pulling on the stictches in belly button plus a burning when wee and today a nice case of thrush on the outside( if u know what i mean) like round the vagina not so much in!!
Emotional yeh it the anaesthetic im up and down at mo.
I agree poppy75 i don't know why they don't inform people better. I guess there is a gap, surgeons focus on doing top notch surgery and clinical side, which is what they do best, but no one thinks to tell you the human reality of what to expect post op. I guess they just don't really see that bit of the journey so it's hard to really understand the experience.
After expecting to be back at work in a week I was terrified at my post op symptoms must have called the hospital twice and went in once for blood test, so must have used resources unnecessarily, not to mention the unnecessary anxiety for the patient.
Whoever wrote that pdf really tried to put himself in a patient's shoes, it's an excellent resource.
Thank you again Starry! The resources and advice you have passed on is fab! Wanted you to know I have just passed that link onto someone else who was worried and needed more info and so def spreading the word!! Xx
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Back to work review post lap - still not happy :(
Post lap, no endo
Post Lap
