Hope you are having a good symptom free day today!
I had my diagnosis and surgery last May, and I wondered - what was next for you after that? from the first referral to start testing for endo and ruling out other conditions by my GP I have moved areas and have also eventually gone private for gynaecologist appointments and surgery, so I have not had a single GP/doctor who has followed me from the beginning and now I wonder - what do I do now? I have requested a dietitian referral to try fodmap diet myself from the new GP and they gave me that, but the dietitian is not experienced in endo so very limited support (better than none!). Now that I am sure I have recovered from the surgery and have made some lifestyle changes I can still see some issues persist: I have some of the old pain back, but keen to keep trying to see what makes my symptoms better. I also know I had some endo tissue left on my bowel as I believe it was not operable at that time. What did you do after surgery? Do you get regularly checked by your GP to ensure you have no more cysts, how/who with whom do you explore the remaining pain and issues you have? Did you get back to the same gynaecologist and have they kept monitoring you after surgery?
Just looking to learn your experiences, feel like I have been left by myself with it and wondering if there is something I am missing..
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I had surgery sep 2021 to remove endo from bowel etc coil fitted at same time. Had no follow up from gynaecology so now awaiting another referral via GP as having cycle every 2 weeks and pain is still problematic.
Thank you for your reply! I’m sorry you are not feeling well, it seems like for many of us the pain doesn’t stay away for very long.. I hope you get your appointment soon!
I had surgery in September 21 and also went private. I'd been back and forth the GP for a number of years with very little help being offered.
Endo was found and removed during surgery and it was advised I use the mini pill to prevent it coming back as fast, but 5 months later the pain returned and has gradually got to the point it was pre-surgery. I had one follow up app with the private gynecologist before being discharged. Since then I have moved area and changed drs surgery's and my new surgery has been amazing with support and within 3 months of first contacting my new gp, I have already seen a NHS gynecologist who is doing further tests to put a plan in place.
Hi! Sorry to hear the good times after surgery did not last very long, it’s really worrying that the help of the surgery is so short lived. Sounds like coming back to the gp and asking for another gynae referral is a way to go, I will do that tomorrow. I wondered if I can referred to the endometriosis centre so perhaps I could speak to someone more specialised. Have you got any idea why treatment options your gynae leaning towards and what tests are they doing?
Yes it's defo worth asking for another referral for a gynaecologist. I believe it's the endometriosis team I seen and I'm having an MRI to see where it has grown back and they are awaiting photos from the private hospital so they know where it was it was found. I'm also awaiting IVF and have asked for a hysterectomy following this so the plan is either more surgery to remove what's grown back or it's awaiting IVF first and then dealing with the endo after this.
Hi,I had rectovaginal endo surgery April 21 and not had my 6 month review as yet, apparently missed off the list. Started getting old symptoms back in January and I called my surgeons nurse 14 weeks ago and awaiting an appointment. Got me back on amitriptyline via my gp in the meantime. Wasn't expecting to have to do this again less than a year later. Not sure what else I can do.
Hi! Sorry to hear you are also here with me in pain-is-back-again club I’m glad you are waiting for follow up appointments already though! Have you tried changing your diet and did it help? I’m going through low FODMAP now with intermittent success but not sure if I can blame the current pain on me not following the diet..
Does amitriptyline help you? I’ve only just recently been given naproxen and I don’t quite get how it’s meant to help me, but I’ve not been taking it daily as it seems to suggest.. that would mean I’d have to take it three times a day forever and it doesn’t seem to make sense? I’ve not had anything else given to me for pain before..
Hopefully I will hear soon, I know how busy they are at the moment. I've tried everything food wise. I went veggie 2 years ago as I felt I couldn't digest meat. I introduced fish back into my diet and cut out dairy. Was completely pain free the minute I came round after my surgery. It was amazing. I'm not sure if it's endo or scar tissue causing the pain now. I just want to know soon so I can deal with it mentally. Its all the uncertainty.
I've had no surgery to remove endometriosis unfortunately and every few days, it flares up with pain. I'd keep trying for help. I though by having the menopause started with injections that it would be rid of my endo, but it didn't remove it at all. No follow up with doctors, so feel very let down. But you keep trying though. Best wishes Val
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I’m glad you are waiting for follow up appointments already though! Have you tried changing your diet and did it help? I’m going through low FODMAP now with intermittent success but not sure if I can blame the current pain on me not following the diet..
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