Hello everyone, I was hoping some could give clarity that I’m not going completely crazy. I had my diagnostic lap at the end of feb this year and found out on the day the Dr only used ablation not excision. I feel since my op my symptoms are getting so much worse than they were before my surgery. She said she found lesions in my pouch of Douglas and uterine fold and my tubes are completely blocked, but the pain I have now is something I never experienced before. When I’m standing up and trying to walk I’m getting the most excruciating pain shooting down my right side around my hip and radiating down my leg almost like nerve pain, and pain under my ribs too and around my incisions (all healed no infections). I’m guessing that areas have been missed/not removed fully with ablation. This is the third time I’ve had to call in sick since returning from my operation and I’m just feeling so deflated and in such consuming pain. If anyone has had similar symptoms I’d be really grateful knowing cause at this rate I’m worried I’m just blaming endo if it is actually not endo at all. 😔
Symptoms worse since op?: Hello everyone, I... - Endometriosis UK
Symptoms worse since op?
Ablation surgery doesn't work. It comes back directly after three months! You must ask for excision surgery or you go elsewhere. Make the specialist sign a paper!
Rather a bold statement!
Oh yeah, your life and your health are not a joke. Some staffs are not professional enough to respect you and treat you right.
I felt worse after surgery, I am now in chronic pain all of the time. I also get hip leg pain also right side. My physio said it was likely endo related. Also my stomach where I had the incisions are very sensitive and painful to touch even clothes can sometimes be too much. I was told that it is probably nerve damage, that it might fade. I understand now after doing research that ablation doesn't work, my surgery was done by a general gynecologist and I'm pushing to see a specialist now. It's very disheartening when a surgery thats supposed to help makes you feel worse but you are not alone in it.
It’s a horrible situation to be in. Where I live you can only see a specialist if you have diagnosed stage 4, which is so upsetting as if anyone not stage 4 doesn’t deserve proper treatment and management of this condition. I didn’t even get any follow-up post-surgery, they genuinely don’t care if it’s helped or not and you have to start the full process all over again. Its awful 😔
Thats so ridiculous, its been proven that it doesnt matter how much or little endless you have pain isn't proportionate. Where I live they never staged my endo, I'm lucky I have a specialist at my local hospital even if wait times take over. I'm sorry you're in such a difficult position with no medical support
I’m the exact same! I never even got pain on my right side (always left) prior to surgery but now it’s horrible especially when ovulating! Don’t know what else to do 
I feel your pain!
Same! I now have pain almost daily on both sides under my ribs that wasn’t there before and monthly sharp stabbing pains in my tummy.
I’m getting shooting pains now which take my breath away which is new, my pain used to be debilitating but I feel my mobility is actually now affected when I flare up.
I really feel for you! 💜
Did you get excision surgery?
I believe so. To be perfectly honest, I felt so terrible afterwards that I can’t remember what the nurse told me about my surgery
Your not going crazy although endo sufferers do think this and that it's our life forever, sounds like some of my daily pain too, I also had ablation to start with and a lap, I've since had a hysterectomy leaving overies now I'm waiting on overies been taken out, and prostap injections up until surgery to send my overies to sleep, keep on at them to try again until something works for you, keep your chin up xx
It’s such a horrible position to be in isn’t it, I admire your strength to have kept fighting sometimes I feel it’s a losing battle xx
hi. Yes I had surgery 31st March. My first cycle felt normal how I used to remember them typical achy belly day before period and then gone once I had actually started period. But this time i am actually still in pain 16 days after I had my period. Still only pain in my right side. I’m walking like a granny sometimes it’s just a tenderness and twisting kind of pain but sometimes it’s a deep shooting pain that really hurts. I feel so sad because I don’t want any more surgeries but I can’t live like this either.
It’s so hard isn’t it and yes that walking hunch is so very very real, it hit me hard in tesco the other day and I had to cling on to my partner I felt so sick with the pain. I think NHS is so far behind in their treatment compared to other countries and it’s neglecting those with endometriosis
Endo in the pouch of douglas usually indicates deep endo. Deep endo cannot be removed with ablation it is the wrong kind of surgery for this type of endo. It sounds as though your surgeon was not and endo specialist, I'm so sorry this is exacty what happened to me at my first surgery. You need to search for a gynae who is an endo specialist and go and see them to get help. Tell me where you are based there might be specalist endo centre near you. Don't give up try to stay strong you can still get some help.
When she said my tubes were completely blocked I was absolutely convinced my endo that was “not bad” was anything but not bad. It indicates stage 3/4 not stage 1, but I didn’t know about pouch of douglas indicating deeper issues either. I’m in Glasgow but they only accept patients with diagnosed stage 4, I think my best chance is to save up and hopefully one day make it to the endometriosis centre in Bucharest. I had adenomyosis detected in a private US because of the formation that shown but NHS have dismissed this also and have said that I don’t. It’s really difficult navigating this in a country that seems so far behind
Edinburgh is meant to have a brilliant endo specialist dept. I know the uni at Edinburgh is leading the way worldwide at endo research, it’s way closer than Bucharest. There are a few surgeons in London who are meant to be really good but not many of the do NHS work. Some of the best docs are meant to be in the US could you go back there if you have connections? Look up the research at Edinburgh Uni I assume they work with the hospital there. Someone on the research team might point you in the right direction. Contact me if you don’t have any luck. Xxx
Had the exact same issue after my ablation. I thought I was going mad. All those hopes pinned on surgery is heartbreaking. Keep fighting - you are not alone and you deserve better. It's astonishing to see so many women have the rib pain too, it has been making me panic.
Sadly ablation is generally used by general gynaecologists who shouldn't even be treating endo as they are not trained. It is your GPs responsibility to refer you to a gynaecologist who has a special interest in endo ( an extra 2 years training in reproductive medicine+endo) however they don't (don't know if it's the same in Scotland). A gyno with a special interest would know how the lesions should be treated and when to refer to a specialist centre. Sadly there are not enough excision specialists so waiting list are far to long. Hope you get the proper treatment you deserve xx
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