Adhesions, advice please.

[Cat247]

Has anyone had adhesions removed to still have the same pelvic pain after?? Severe endo removed in 2014, recent op last month where they didn't see any new endo just adhesions. How can I still be in so much pain?!!

[Lula79]

Hey, I had my lap 6th in 2015 and they found adhesions only, I had 2-3 months of low pain then it all flared again after 2 trips to the specialist, who said try zoladex and pain management, I'm still in pain so had to to go a&e and they found a cyst and suspected adhesions AGAIN I didn't think they came back very quickly but they do.

How long after your op did you get pain can you see your specialist again?

[Cat247 in reply to Lula79]

Hi I literally just had the lap on 6th March, the first week or 2 after I had more recovery pain but then wham there it was and it's back worse than ever. It seems to effect my sciatic nerve so I get pelvic pain, round into the hip and down the right leg. Some days it's so debilitating. I've had to be booked in on the 27th of this month to see my surgeon in clinic. God knows what they'll do now if this surgery hasn't worked. After my big op in may 2014, I had a good 6 months pain free after I recovered. I'd do anything for some pain free time. I heard they grow back quick but not meant to cause pain for a few months or years. I just feel so unlucky and worried they won't be able to help me now and I'll have to live in pain.

What's your situation now hun? Have you go to have more surgery?xx

[Lula79 in reply to Cat247]

Oh no it sounds like you've not had a break and I know how that feels it's awful and gets you so down doesn't it the back, leg and hip pain could be something called sacroiliac joint pain I get pain in exactly the same areas as you said about and thought it was all related to endo, but when I went to the pain clinic they said it was this sacroiliac joint condition! I think it could be linked somehow though because when you're in pain you sit/lie/stand differently to normal as you're compensating on one side to elliviate the pain.

Oh Hun it's awful I really do understand what you're going through, but really push the fact you're in so much pain all the time.. do you work? And is it effecting that?

Well my situation is that I'm having another lap on the 18th April so a week Tuesday to get rid of a 6cm cyst I've now got on my right ovary, plus they will get rid of any adhesions they see aswell I just wish they could do something to stop them coming back so quickly

But they have to listen to you when you go in my lovely no one should be left to live in pain, and what's so depressing and deflating is that that you have to fight to be pain free which is so so wrong it's inhumane really I hope you're ok, what meds are you on? xx

[Cat247 in reply to Lula79]

It's funny you say that about the SI joint. Years ago when nobody knew what was wrong with me that's what the pain clinic said was the problem. I had a steroid injection into the joint but it didn't help in anyway, whether that and endo at the time was the problem. The only thing I can't understand is that the pain now is like it used to be. When the endo was removed I had sometime pain free but now pains back as before but no new endo and even though there was adhesions it's not looking like they're causing my pain either 😭😭. Oh it's all such a mind boggle isn't it.

I do work 3 days a week in a office, so sitting at a desk all day doesn't help. I also have a 8 yr old and a 19 month old to look after at home donuts very hard to catch a break. Like you say it's so depressing and deflating. I've had a right old meltdown today, my poor husband bares the brunt of it. I wish I had endless amounts of money so I could go private. So many hoops to jump through with the NHS. Meds wise the only ones that help a bit are oromorph and tramadol but I try not to take them as they leave you spaced out and I worry about functionality by at work and around the kids. Paracetamol and Ibuprofen may aswell be sweets! They do nothing. I've had naproxen before and that doesn't help either. Most meds make me extremely constipated too so then I have that to deal with which can be horrendously painful. Feels like a no win situation.

Best of luck for your upcoming op. I really hope they can help give you some relief.xx

[Lula79 in reply to Cat247]

Thank you so much 😊 I hope you can get something sorted too .. I know what you the mean pain feels the same even if it's endo or adhesions so it's hard to know! Urgh let's hope we win the lottery and can give up irk and go private!! Cx

[Joannavh]

Exactly the same situation as me. Had endo removed in 2015. Had second lap on Tuesday as in so much pain and no new endo showed up. I'm asking the same question 'why so much pain?!!'

[Cat247 in reply to Joannavh]

Oh no sorry to hear that. It just doesn't make sense does it. Did they find any adhesions this time? Last time I had severe stage 4 endo but this time adhesions were sticking my ovaries to the pelvic wall. I thought great that should sort the pain but nope I'm still in same pain as before. Just feel lost now as to what's wrong but am seeing my surgeon in clinic on 27th so really hoping he has a solution.xx

[Marcia71]

I too have had this problem in the past so the surgery I had on 28 Mar removed endo and adhesions and scar tissue and then put a gel in to help stop more adhesions forming. I think that gel is adept.

Unless a gel or mesh is put in to stop adhesions they will keep coming back and get worse and as endo sufferers we are much more likely to suffer.

I'm hoping this has worked for me. So far I'm in much less pain.

If not there are apparently special massage therapists that can help with adhesions.

[Cat247 in reply to Marcia71]

Thank you for your reply, it's good to hear others experiences. Gives me hope.xx

[Heloo85]

Yes. I had surgery in december .. Removed adhesions, cysts, stage 4 endo and my fallopian tube to not only not get better, but to actually get worse. Turns out my problem wasnt endometriosis to begin with .. well was as that caused PID, and probably did cause pain, but theyve now realised my bowels are inflamed and my new colorectal surgeon thinks it has nothing to do with endometriosis. When this all started, i was diagnosed with PID. I had bowel, urinary and gynea symptoms aa i just 'explodes'. Ultrasound showed hydrosalphinx, and fluid in my bowel loop .. First lap showed extensive endometriosis and my fallopian tube wrappes round my bowel. Surgery cured nothing. Didnt cure pain, bowel or urinary symptoms! Possibly gynea symptoms but 6 months of antibiotics to clear the PID probably did that! Be careful, your problem might not be adhesion or endo related!

[Cat247 in reply to Heloo85]

Thank you that's really interesting I too get bowel and bladder problems. I'm actually having a colonoscopy on 9th may so be interesting to see if that shows anything. How did you find out you had PID? Is there a test for that. My endo was really severe in first lap, I had what's called a frozen pelvis. Recent lap ovaries stuck to pelvic wall with adhesions. I really hope someone gets to the bottom of my pain soon. Thanks for your reply it's good to hear others stories.xx

[Heloo85 in reply to Cat247]

PID is pelvic inflammatory disease which usually means STI but not alway. I exploded during night, i thought id peed myself, but i wasnt, well i was, but it wasnt where this discharge was coming from. They tested for STI but they kept coming back clear so swore i never had an infection. An ultrasound showed an acute abdomen, so dr sent me to GUM clinic, as this all happened as a result of a sexual assault. They took a sample from my cervix, which bleeding hurt and i was diagnosed with PID, but then all STIs come back clean again. They think my cyst was harboring and infection and the assault ruptured the endometrioma, causing a massive pelvic infection.

[Heloo85 in reply to Cat247]

The thing we have got to all remember that pathology doesnt mean problem. People can have mild adesions and be in agony, while others can have extensive and have no problem at all! Same with endometriosis. I waited 12 months for priority surgery thinking/hoping i was going to be cured, because obviously 'endo' and severe at that, was found and was obviously the problem. So everyone thought! And it probably was some of the problem, but certainly not all! I shouldve pushed to have my bowels properly investigated a year and a half ago but didnt cuz of drs putting it all down to endo! Im glad youre having a colonoscopy, im having mine this thursday! Just keep looking .. Dont be blinded by your first diagnosis, get everything ruled out! Good luck xx

[Cat247 in reply to Heloo85]

Gosh you have been through it, I'm terribly sorry to hear what happened to you. Good luck for Thursday, would you let me know how your colonoscopy goes?xx

[Heloo85 in reply to Cat247]

I will do .. dont let drs fob you off .. My gynae wasnt interested at my post op appointment .. He said "you must be feeling better" .. My health crashed again to point i couldnt stay awake .. felt sick 24/7 .. I went Drs who said "severe constipation" and i just kept going back. Perservering got my to a new colorectal surgeon and got me on priority list for colonoscospy .. Dont let them fob you off! We shouldnt have to live constantly in pain, sick, fatigued .. Theyre meant to be Drs! Xx

[Cat247 in reply to Heloo85]

Yes I'm going to go fully armed with notes and questions to my next appt as fed up of getting fobbed off. I only have this follow up as I pestered the surgeons secretary who got the endometriosis nurse to phone me and I broke down on the phone about how bad I am still. Nobody saw me and explained anything after my recent surgery and there was no follow up planned originally. They expect you to just go off and understand what's said in your discharge summary and that's that! My old surgeon who was fantastic and always looked after me well has retired so this surgeon doesn't know me or what I've been through. I say a colo-rectal doc 2 weeks ago who basically said my pain was IBS and adhesions?! Even though I just had adhesions removed. He said I'll always live with pain so after ruling anything major out in the colonoscopy it'll be about pain management 😩😩. Not really prepared to accept that just yet. I'm only 33!. Anyway will see what my surgeon says when I see him and if anything pops up in the colonoscopy. Best of luck for yours.xx

[Heloo85 in reply to Cat247]

My first colorectal surgeon who worked alongside my gynea didnt even give me a physical once over let alone any tests. Went into theatre blind with my gynea! During surgery it went from intetmediate to major! Then afterwards when i become real ill, drs were like "its constipation", its "IBS" .. They ummed and arred about sending me back to my gynea or whether to send me to another colorectal surgeon. They went with colorectal who gave me one physical and said "your bowels are inflamed, thats your problem". Over the past year and half ive seen around 6-9 separate gps whove diagnosed me with "impaction", "gastroentrotis", "constipation", "ibs". Ive been admitted to hospital to be told its my endo, outside my cycle. Ive seen 4 surgeons, 2 gynea, 2 colorectal and only now, and one of all those specialists have realised my bowels are inflammed! I know your struggle! Keep at it! Xx

[Heloo85 in reply to Cat247]

Just got back from colonoscopy .. I was lucky enough to have it without sedation. Everything was going well until they inflated my bowel about the same spot as my left ovary, the pain was so bad i nearly jumped off table. Dont remember much after that as i think i sucked half a bottle of gas an air. I then thought test it again! Stopped the gas and air to see if i had pain anywhere else but nope. Only lower left side and it was agony! The inside of my bowel was healthy! But i assume something is ristricting it. Endo, adhesions, i dont know .. that would accout for the constipation and narrow stools .. all i know is that it bloody killed! Xc

[Cat247 in reply to Heloo85]

Oh god that doesn't sound pleasant at all. Great that your bowel is healthy but clearly something going on near the ovary like you said. Will they report that back to your gynaecologist? How you feeling from it now?xx

[Heloo85 in reply to Cat247]

Luckily i have a follow up with my gynae next month so i will be telling him and begging for an mri/ct. I will also be seeing this gastro guy for a follow up! And ill be asking him for a ct/mri, hopefully one will give me one. The pain on left while bowel was fully inflated was ridiculous. The rest however was a walk in the park. I feel better now ive eaten but got some pain down the left from air but other than that, im ok! Xx

[Johnnyj1024]

Did you ever go to a urologist that specializes in dealing with pelvic pain and diagnosing patients with pelvic floor dysfunction? I spent years with symptoms that mimicked uti's and severe pelvic pain on top of endometriosis symptoms. Over three years ago, I was diagnosed with Interstitial cystitis (chronic inflammation of the bladder that causes symptoms that mimic UTI's) and pelvic floor dysfunction which causes severe pelvic pain and spasming. Just focusing on my treatment for pelvic pain, I went to a physical therapist that specializes in this weekly in order for them to work the pelvic floor internally as well as work externally on stomach adhesions and scar tissue that I had. This did help to bring some relief but of course it didn't take it away and if I didn't go, it would flare up really bad. I continued searching for answers and officially found out that I had endometriosis as well and had my first excision surgery on March 4th where in addition to removing the endometriosis, they removed adhesions from my stomach wall from belly button down to on my bladder as well. My specialist warned me at my post-op appointment that I would still have pelvic pain after the surgery because the pelvic muscles continue contracting as they did before the adhesions were removed until you retrain them over time with pelvic floor therapy. I am just starting it again this week so I am hoping she is right and I hope this helps to give you some insight that maybe your issue is bigger than endometriosis. I was told that Pelvic floor dysfunction, Interstitial Cystitis and Endometriosis are all linked together. I hope you find some relief soon, I understand how mentally draining this can be.

[Cat247 in reply to Johnnyj1024]

Hi, thanks for your reply. I have been under a urologist last year as my bladder has never worked quite right since my big op in 2014 when they removed my endo. I can't just wee normally I literally have to push it out and lean backwards and forwards, annoying but I'm used to it now. I had urodynamics tests and they said I basically had a lazy bladder. I get catheters on prescription as I sometimes need them to empty my bladder fully. I try not to use them but if I have a period I need them then as can't wee usually for a couple days. After this last lap on 6th March I needed them for 3 weeks before I could wee on my own! They did do a cystoscopy during this lap. My discharge summary says mild inflammation within the bladder. I've no idea what that could mean or if that's causing my bladder issues but that is one of my questions for the surgeon when I see him in clinic on 27th. Nobody came to see me after this recent op, a nurse just gave me a discharge summary. I didn't even have a follow up in clinic until I asked for one because of how bad things still are. Like you say it is so draining. I've also got to have a colonoscopy on 9th may due to the bowel side of things. I def think there is more going on than endometriosis. I really hope you get some relief soon too, doesn't sound like you e had a great time of it. So nice to speak with others who understand.xx