hi everyone!
Im 4 weeks post endometriosis laparoscopy today. They found deep lesions in my pouch of Douglas, on a nerve and on the uterosacral ligament.
Im on a patient lead follow up for 6 months but my question really is at what point do i reach out to them?
I have severe back pain everyday still and am taking painkillers as much as possible and im just not sure what is ‘normal’.
any advice would be much appreciated xx
Hi
Sorry you have pain, hope the meds do help.
You said they found Endo, did they remove it as well or was it just exploratory? It might also depend on if they did remove it, we’re they experienced enough to remove it all or left any. Was there any found on the bowel but not removed.
It is worth reaching out to the secretary and asking, also request a copy of your records from the hospital. I find it useful and there’ll be a page on the website with how to do it, it’s free.
Hi,
Thanks for reaching out ☺️ i had excision surgery also, it terms of how the surgery went, i was told it was uneventful and the lesions have been removed. Nothing has been mentioned regarding the bowel thankfully.
thank you for the advice, i will look into this and reach out to them, it feels like at the minute i just don’t have all the details of my diagnosis/surgery. Xx
That’s good they got rid of it, the body will take time to heal as well.
Definitely worth getting your records, I just find it interesting. I think it’s common to not feel like we’ve been told enough and dismissed too readily. They just don’t understand the pain and discomfort. There’s a good chance you are still healing.
Hi! I’m 12 weeks post op, and still having issues. I had endo excised from pelvic walls, ligaments and adhesions removed which were sticking organs together.
I was also having severe bouts of pain at your stage of recovery, it’s really hard to know if it’s the healing or ongoing symptoms which haven’t been resolved. I reached out to the endometriosis nurse around week 8 to get her opinion, she said by week 10/12 there should be improvement but my symptoms have persisted so I’m now waiting for a clinic appointment to discuss next steps.
I think it can take a while for some but it’s worth logging concerns with them if you have the consultants secretary email/details of your endometriosis nurse. At least then if they say it’s too early they have a record should symptoms persist (but hopefully not) xx
Hey,
Thank you for taking the time to reply, it is really helpful to me.
I think recovery is downplayed massively to people with endometriosis and not talked about enough with patients. Being on a patient lead follow up is tough because this is my first time through and a lot of people keep saying to me oh youre just recovering.
I happened to meet the endo nurse when popping in post op for some antibiotics (uti from the catheter *eye rolls*). But ive sent her an email this morning so hopefully she will reach out 🤞
Hopefully you’ll get some support with the next steps because everyone goes into surgery hoping they’ll feel better afterwards and it is really difficult. Sending love xx
Recovery is massively downplayed. I feel like people don’t actually discuss how immobile you are initially. How long it takes to get any energy back. I’m twelve weeks now and still mostly working from home.
I was discharged thankfully same day, the prospect of staying in was so stressful they moved my op to first of the day. They didn’t give me any after care instructions, I had two additional sutures to hold ovaries out of the healing area which had to be removed. They didn’t tell me where or when.
I then got biopsy results back, nothing sinister, confirmed endo and Adeno. Then discharged me at 6 weeks post op 😔 They said I’d have constant access to the endo nurse afterward but if anything persisted then to be referred back which is again another wait. None of it makes sense to me. It’s such a bizarre approach but it must have something to do with their numbers.
Do you have access to an endometriosis nurse through your hospital department? You could phone the hospital department and ask to speak with either a nurse or consultant given you are still under them and say about the pain you are in post op. I've found the endo nurse really helpful as the go between where it's not that easy to speak to the consultant outside of appointments. See if they have an email address you can get off the secretary. If you are in real pain now, no better/ worse than pre op, then you need to understand what your operation found or next steps. I guess recovery time is different for everyone. Except tiredness and some settling with the coil and bowel difficulties, soreness, I was not really in pain 4 weeks after my first surgery where mine was in the areas you mention and pelvic walls. You mention a nerve so I'd be inclined to ask more about that location and what was done with that and how that might be causing your pain. Hope you feel better soon.
Thank you so much for the advice. I sent the local endo nurse an email this morning basically describing the pain im in and asking should i speak to the consultant, hopefully she’ll reach out and suggest what to do. I think you’re right in that i want to know more about the surgery because my pain currently almost seems like sciatica and talking to the surgeon and the pictures i have from the op show a deep patch on a nerve. Seems like a lot of people aren't in pain by week 4 which is why im questioning things i guess 😔 thank you xx
sorry you are also going through this.
My only advice would be to ensure you are kept on the system.
Please see my posts to understand what I mean but I have had the same journey during which they did not follow up or monitor and instead discharged me. I did not know I had been discharged until I was seeking surgery and have had to be referred once again and have wasted the last 18 months waiting on referral appointments once again after previously being diagnosed. It is now stage 4 DIE and I require a large surgery with impact to my bowel.
Keep chasing, keep on at them about pain and keep a log of everyone you speak with.
Wow this sounds so frustrating, sorry youve had to go through this, i read your posts ☹️ ive emailed the endo nurse and will go from there but i think its terrible we dont have follow ups by default, every case is so different and the surgery is a big deal. Praying your next surgery goes well and you get some relief ❤️
The fact you have already been allocated an endo nurse is good news, just keep on at them. I didn’t understand enough about it 2 years ago to know I should have had this. Thankfully, I now have one who is taking charge of getting the surgical team in order and all prep etc but unfortunately I’m now 41, with no children and very much feel like I’ve run out of time to be a mum.
Keep at them!
hun I am nearly 6 months post excision surgery I am back to square one with extreme pain. But I think for me I have endo else where in my body and not just the pelvis region. I like you had a lot of adeshions and bowel involvement as well. I like you ended up with kidney infection due to having a catheter just for one night. I also have fibromyalgia and autism . And a few other health issues. I hope it improves for you . My pain clinic dr said for me it would be a slow recovery but I feel like I did before op with the constant hip and groin and stomach and ovary pain . When I see my consultant next week for my three month post surgery consultation I’m going to ask for a hysterectomy as I’m literally done . But am going to be saying since my op have been coughing up blood and have had a different infection in body every single month since my op in may I have chest infections kidney infection bladder infection sinus infection shoulder tip pain neck pain and also pain under my ribs and chest pain so for me could be a little complicated. Just make sure you still fight and don’t get them to down play pain etc . I had an issue where this injection dropped my mood over night and made me suicidal that was when they put me in a medical menopause. If they suggest that again I will decline as I had no person centred care. All I was told was I should only get hot flushes and nothing else . I was just brushed off by the endo nurse . Thankfully my lovely dr sorted me and now am a lot more better mood wise . Take care xx I hate we still have to push for things even after diagnosis and surgery . Xx
I also had endo ablated from POD and right uterosacral ligament too, I never had back pain until 3 month after surgery my uterus amd bowel were stuck together so not sure if this masked the back pain. Surgery was june and iv new symptoms now too. Hope your meds help in some way x
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