I'm 48 and have just discovered I've had endo for years unknowingly.
I've recently had surgery to remove my left ovary and fallopian tube as there was a cyst. During surgery she discovered the ovary was totally stuck to my pelvic wall and there were many endometrial lesions in various fossa. (Not really sure what they are.)
My problem is I was healing nicely and was pain free and then around week 5 or 6 post op I began to experience worse pain than I had the operation for in the first place! It's like period pain (which was probably endo pain all along) a sort of pulling deep within. I've seen the surgeon who couldn't think what it was and suggested it was phantom pain.
Has anyone else experienced anything like this?
All thoughts mush appreciated. I'm trying to stay calm but am panicking that I'm stuck like this forever now.
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AnnaFiona
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I had lap for endo in Feb, pain didn’t go either and at follow up he said it was deep end. I’m in the same boat as diagnosed at 51. Now waiting hysterectomy and removal of any further endo.
I’d ask for a referral to an endo specialist, unless they were, and the pain clinic. Ask for a gynae MRI. Did the gynae check all over and remove endo?
Thank you so much for your advice. I didn't know they could do a gynae MRI. That sounds just the ticket. There is something going on in there and I want to know what. It feels like something's stuck to something else as I feel this pulling pain.
I think you're right about seeing an endo specialist aswell. This gynae isn't as far as I know. I asked if she checked my bladder as both before the op and after, the pain is aggravated by a full bladder. She said she did and that the bladder is clear.
When I told her at my follow up appointment that I was still in pain she said she'd removed all the endo and the left ovary+tube and couldn't think why I'd be in pain. She said "There's nothing there."
I'm worried that there's adhesions or something as apparently the left ovary was very stuck. I feel that maybe they need to get back in there before things get too stuck together but I could be way off the mark. All I know is it hurts more now than before the op and I feel a fool for having it.
How did they decide to do another op for you? If they saw it was deep could they not treat that at the time? Maybe they recognised it needed a bigger op. Poor you. What are you taking for the pain? Are you nhs or private patient?
Thank you for replying anyway, means a lot, I feel a bit at sea with this.
Don’t feel a fool for having op. You needed to know. I ran through options in my head and decided only one way to find out, even if he was wrong.
The initial consultation and lap was private, sold some bits.
The first gynae was experienced with endo and knew he’d need to refer to his colleague who runs the BSGE part and multi disciplinary team on NHS. There was more going on than he thought, including enlarged uterus with numerous fibroids. The only regret is not having an MRI first. My symptoms weren’t any better and he wasn’t surprised. He put me on Zoladex in the hope that it would help and natural menopause would kick in and everything settle. Symptoms have got worse and around four stone lighter over the last year.
All the feelings you are getting are natural with this and most, if not all can relate. 🙂
For pain I’m taking Amitriptyline for nerve pain, either Tramadol or Oramorph. I’ll be taking two doses today as I have UTI (well trace showing, waiting lab results)
Also paracetamol. I try not to take anything if I can get away with it, mainly only happens if I do absolutely nothing. 😂
Thanks for your reply. I was given gabapentin for the pain but from reading the information leaflet that comes with it I'm not on a high enough dose for it to be effective. I've taken it for a couple of days and the first night it worked but the pain has 'broken through' since then.
The consultant told me it takes 6-8wks for amitriptyline to work and gradually increase to max five x 10mg. Have a chat with GP. Be aware if they increase the quantity they may change the strength. GP did this recently by prescribing a 50mg tablet, it’s only because I was checking on line records that I saw it. I could easily have taken five of those as no one talked to me about it. Got them to change prescription back to 10mg so I can have flexibility. It doesn’t always help.
BSGE are centres normally within an NHS hospital, the gynaecologist has to be experienced with endometriosis, include a multidisciplinary approach with a bowel surgeon, etc., and complete x laparoscopy ops.
If you do a search on their website you can search for your local centre.
GP screwed up on pain referral so ended up seeing the consultant listed as part of endo team.
Hi there. I feel your pain. In Feb I had my left Fallopian tube removed for the same reason. Within a couple of months I was experiencing the same pain. They did a ct scan and found fluid in my pelvis. They call it PID. They kept treating me with antibiotics two strong ones which made me so ill. I got rushed to a&e in mid July where they finally decided to operate again. They found a huge abscess in there with more masses on my left ovary and tube. It incorporated my appendix and bowel with all the adhesions. Ended up having extensive surgery to remove it all. I’m 3 months post op. I’m in agony most days and bleed constantly. I’m back in for my third surgery next week as it looks like I have massive adhesions in my womb now. I’m currently in bed in so much pain, taken maximum tramadol and mefenamic acid tablets with no let up. It makes me not want to be here. I’m 41 and just want the hysterectomy now 😭. Worst thing about it all was that they think they may have caused the infection after the first op. It is horrible as each time I went back to hospital they would treat me as if I was going mad. There is no pain like it and I’ve had a lot of different surgeries over the years and nothing comes close to this. I also have an aversion to strong meds so end up on a drip being sick constantly 😬
God it sounds horrific! You are really going through it, I'm so sorry. I get what you mean when you say 'worst thing' is that first op might have caused the problem. It makes one gutted for having the first op. I wish I'd never gone to the doc in the first place now. Did you have a fever with the infection? I am assuming my pain cannot be an infection as I have no fever.
So all those adhesions on your appendix and bowel and the masses on your ovary and womb formed since your original op in February?! Goodness that's scary. They formed fast. That is precisely the sort of thing I am worried is going on inside of me, except my pain level is not as bad as yours. (I'm touching wood and crossing my fingers it stays that way as it has been rising steadily.)
When is your next op scheduled for?
I hear you about being treated as if you are going mad. My gynae told me she couldn't think why I was in pain as the operation should have made it better. She thinks it's phantom pain?! I was willing to believe her that day as it wasn't that bad and I had been in self isolation for 2 weeks so thought "Maybe I've had too much time to think about this." But the pain has increased steadily since that appointment. This isn't phantom pain.
Anyway, thankyou very much for your message and I hope you get some relief soon.
Hi. I never had any fever with the infection. The only time I had waves of heat was when the meds made me poorly and I got sick. Yes the masses and scarring happened really quick. They weren’t rhetorical in Feb. It’s madness. My next op is on 4/11. I have my covid test on Sunday then I have to isolate till the op on Wednesday. I just hope it does the trick. Good luck xx
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