I’m 7 weeks post op and still experiencing all the pain I had before.
Endo has been excised from pelvic walls, ligaments and ovary detached from uterus/bowel. I assumed my daily pain/pain down legs and lower back was all due to Endo but I also have Adeno and didn’t really take this into account thinking I’d wake up and this excision would make everything better.
I’m currently taking the combined pill back to back with a break after 3 packs. I’m still spotting every day and still have pain lower back, down legs and the bowling ball feeling in my abdomen (gets worse closer to the break which sort of makes sense). I’m about to have my first break/period post op, slightly terrified.
For anyone that’s diagnosed with both, did excision of endo help you with pain? Should I be asking to turn ovaries off (with the different hormone treatment). My consultant agreed the coil would not be best for me given my disposition to progesterone only in the past. I don’t know if I’m being impatient and should just wait, if so how long do you wait before going back to the doctor? I’ve been discharged from the BSGE centre but have available aftercare with their Endometriosis nurse, should I be contacting them or is it too soon?
Any advice would be hugely appreciated xx
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Tangoandmax
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Hi, I too have severe Endo and adeno. My last excision made my pain become constant pain of varying levels 24/7, which it wasn’t before the excision. I’ve been told this was down to the nerve and ligament damage and so much scar tissue caused by disease and also the extensive surgery.
I’m so sorry you haven’t had any relief either, it’s such a cruel disease with so few treatment options. None of which have helped much, especially when the disease is so severe.
Im so sorry thats really not what you expect after going in to help, I can’t imagine coming out worse- that must have been awful!
I already had pain every day. And to be honest this was one of many things significantly impacting my life. Due to tethering of organs intimacy had become impossible causing huge strain on my relationship. We also don’t have children yet so this needed to be fixed. Yet to establish if this has resolved issues as I’m still sort of bleeding and In pain everyday - it’s got to be the Adenomyosis.
I just don’t know if I should be seeing improvement by now or like I say I’m being completely impatient.
If you don’t mind me asking, are you currently taking any hormone treatment?
hi lovely, I have both, I was diagnosed with both after my lap in March 2023, had endo excision and felt only the slightest relief after my op (just the hip leg pain that went away for a bit) the bowling ball in stomach and back pain got no better at all and my consultant said that this means the pain I get is mainly down to the adenomyosis, he said unfortunately the only help they can give for that is hormonal but I’m TTC so nothing more can be done.
I’m also spotting throughout my cycle and have been using progesterone cream I got online after luteal phase, that has stopped the bleeding but not pain wise x
Thank you for your response. I’m so worried I’ve gone through surgery for nothing but realistically it could have been predominantly Andenomyosis all along.
We’re not ready to TTC at the moment hopefully that means there are other hormonal options for me. I’ll reach out to the Endo nurse to see what she says. X
It’s awful when you’ve waited for so so long for the surgery and you don’t get the relief you’re hoping for. My main issues arise with my period and ovulation and they’re no better after surgery.
When I had my follow up they recommended the coil so I guess this is something they may suggest to you too. I hope you get some relief! X
I have constant pain in lower abdomen. It took eight years to get a diagnosis and previously I hadn’t struggled with periods, they’ve always been awful but I thought that was normal. My flare ups were around ovulation. The pill is ensuring I don’t have the flare ups as it’s stopping ovulation but the bowling ball/pressure and back/leg pain is just constant. Currently sometimes worse than pre op!
They did offer the coil but my consultant agreed that given I’ve tried the both the progesterone only pill and implant which just make me permenantly bleed (like a period) it wouldn’t be a good option for me. I just wanted a semblance of life back. X
It took me 15 years of pushing for a diagnosis too, I had to go private for him to put me on his nhs list for a lap and low and behold I have stage 3 endo and adeno.
To be fair my ovulation pain was ever so slightly better for a few months after I’d healed but it didn’t last long and I’m just spotting all the time now so in the queue waiting to be seen again! But the consultant said to me that a hysterectomy was my next option.
That’s mad that you bleed through with the pill, keep us updated when you get to speak to someone as it’s interesting to hear what else they could offer! X
Hey hello, I am sorry to hear you have had no improvements after your surgery.
I will share my experience with you.
I started HRT in December 2022, that is when I was constantly in discomfort. The HRT were making symptoms worst, all those over many years that I understand were just normal for a women. I have had various investigations on certain parts over years but nothing identified.
I was diagnosed with a endo cyst in November 2023 which was laparoscopy removed with an ovary and fallopian tube.
Remained in severe pain. Had a coil as recommended, made no difference.
I was referred back to the Gynae consultant in July 2024, after pleading with GP, who looked at my MRI and said I should had been diagnosed with Adenomyosis too. My options were to wait for menopause and the pain should go or have a hysterectomy. Not sure of your age, but I am 49 so that made sense to have a hysterectomy.
I had surgery on 9th September. My womb was attached with many many years of endo debris to my bladder and bowel. A straightforward operation, took over 7hours and needed Urology and Colorectal surgeons too, which was really unexpected.
All I can say at this moment, I am still in recovery but in 10days It has already changed how I feel. I am not fatigue, I feel no pain (i know this as only taking paracetamol post op and before I needed the strong stuff which made no difference) my bowels are now normal. People say I have colour in my face and the constant frowning has gone.
In hindsight, and the only thing I can suggest to you...don't let it drop. I went back to my GP every month after surgery in November. The severity of my endo/ adeno was not picked up in MRI or 1st laparoscopy. There should be something that can help, even if a hysterectomy isn't something for you yet.
A friend of mine has recently had a private consultation with a specialist women's service and they have put her on testosterone, which has been helping!
Particularly diets are good as well, where you stop eating diary and gluten but eat my anti inflammatory foods.
Good luck getting somewhere and hope your pain decreases. ❤️
My Endo nurse told me it can take up to 12 weeks to notice a difference. Unfortunately, I am just shy of 7 months post op and other than a slight decrease in pain, it is all still there for me. I would give it a few more weeks before worrying. We have to remember that we’ve been cut into and all sorts and that means A LOT of internal healing
Thank you for this, the reassurance helps. 🤍Google does say that some chronic sufferers don’t see improvement for up to six months. I’ll give it the 12 weeks and go back then if needed x
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