I had a laparoscopy done last week after years of gynae, bowel and bladder pains/issues. They discovered adhesions (riddled apparently!).
How come no one ever put two and two together to suspect this? It was only found as I was convinced I had endometriosis and demanded the lap. I haven’t got endo but adhesions have almost identical symptoms.
Anyone else have these and can give me some experiences? I can’t find any testimonies on the Internet!
Hi EchoNar,
Endometriosis itself is an extremely complicated disease and is often difficult to diagnose without surgery due to the symptoms often occurring in other medical conditions- IBS, interstitial cystitis etc or these can occur in someone who also has endometriosis and explain some of their symptoms. Adhesions can occur for many reasons- previous surgery eg appendix removal or Caesarean section or be idiopathic where the cause isn’t known and/or person has never had pelvic surgery of any type. Adhesions can be extremely widespread in someone but because they aren’t dense they don’t distort the anatomy in the pelvis eg pull the uterus or ovaries into an abnormal position which makes this difficult to pick up using various imaging modalities. The opposite is true for dense adhesions which typically (although not always) especially if widespread distort the anatomy of the pelvis. This can raise suspicion especially if there are additional symptoms of endometriosis but again it isn’t reliable enough to use as a diagnostic tool and a key point is that not everyone with adhesions will experience any symptoms. This is partly due to not all types of endometriosis even if severe necessarily distorting the position of pelvic organs, plus IBS and interstitial cystitis are known to often coexist in those with endometriosis so some symptoms put down as endometriosis related eg endometriosis deposits on the bladder or bowel. I know this to be the case myself as I have endometriosis, adenomyosis and IC with an element of IBS - is the IBS related to these or makes IBS more likely or is it a combination or these plus stress? Most likely all of these. Until we have more reliable ways of diagnosing endometriosis without surgery there will I’m afraid be many women like yourself (and to a certain extent gynae teams) who are convinced they have endometriosis. There are exciting projects in the pipeline to potentially identify sufferers but until then surgery is the gold standard for diagnosis.
At this moment in time I’m guessing you will probably have a follow up appointment scheduled with the team so you might want to start writing a list of questions to ask:
Do they have any idea what might have caused them?
Do they think they might return? - * they might return but be finer and cause no symptoms so no surgery is needed
Did they use any treatment to reduce their reoccurrence?
If pain was an issue and it is at the time of your follow up what potential treatment is on offer. There is good evidence to support the use of amitriptyline or gabapentin for neuropathic pain. It might not be something you need long term but for 6-12 months to reset the pain pathways in the body that have become over sensitive to pain. Again please don’t be put off by stories that exist that discourage their use - many people benefit from them and many who do experience side effects find they are short lived. All medications even paracetamol has the potential to cause unacceptable side effects in some people but it doesn’t mean it shouldn’t be used.
I hope this has helped and that you are recovering well from your surgery especially the shoulder pain which I know can be awful.
Hi
Thank you for taking the time to reply. I have been really ill trying to recover. I had a huge bowel bleed which has left me in more pain. A&E said it’s not related to the surgery....
I think I know the cause: c section then an infection. That was 21 years ago.
I’ve been under gastro and had a CT scan after a colonoscopy couldn’t proceed due to the amount of pain I was in. CT was clear but as you say the adhesions only show up on a laparoscopy.
I keep having sporadic bowel bleeds after a bad bout of diarrhoea but as there was no cause I was discharged. My GP wants to re-refer me but I want to see the surgeon first as that’s my next step.
Hi. I am sorry you have this kind of worry and discomfort.
The bleeding makes me wonder if you have developed diverticulitis?
Have you read about diverticulosis which most people by age 60 have ? If it gets inflamed and becomes diverticulitis, bleeding is a symptom. Just a thought.
Ahh thanks for this. My dad has it so maybe worth looking in to. I’m so down about it all and as I haven’t got an appointment with the surgeon yet I feel in limbo.
Try to be patient. Worrying will only make you more stressed out. Keep me posted. I wish you luck finding answers.
Amitriptaline has really helped me I had an injury to my groin muscles I tore a muscle under bum cheek that attaches to pelvic floor and my nerves went crazy amitriptaline has calmed them down and relaxed my muscles and I feel like now my muscle can repair now every thing isn’t so tense because of the pain I had, first couple weeks had dry mouth and first few morning felt a bit groggy but now I have no side effects! On 20mg
What kind of Dr would I see. I’m 65 years old and someone mentioned endometriosis to me I just didn’t think that was it. I will look into Laparoscopy. What do they do? How are u feeling????
Hi Echonar---I can relate! I've had 3 laparoscopic procedures to remove adhesions.; "Apparently they love my internal organs" and have the tendency to attach and adhere one organ to another. I was blessed by an emergency room doctor, from repeated visits, to send me to a Dr. who knew of these. The first time, I suffered for two years, gained 40lbs and was told 'it was stress--all in my head and to change my life since I was bringing it on myself!' That Dr. who finally did the 'exploratory' (they won't do that now!) said he found over 40 massive adhesions in my uterus alone, and I was loaded all around it! Told me they are 'funny things': some people can have a huge one and it never bothers them, someone else can have a tiny one in the 'wrong' place and it is excruciating.' Like I said--in my case, the adhesions love my organs, so since I had learned the long hard way what they feel like so that Dr. told me if I feel that again...GET someone to listen and help. Most gynecologists know what they are, but the insurances need a 'valid' reason for a surgery to get them out, so the doctors don't want to fight the insurance--unless you find one that truly cares. Maybe if we can just get enough women to recognize the pain and pulling symptoms it would have to be word of mouth. Get a good gynecologist--one who cares! --They do know! ADHESIONS!!! DO EXIST!! Best of luck!
Thanks. Luckily I live in the U.K. so health care is free!
NICE! Just keep fighting! and saying adhesions!!!!! It's a simple lap procedure........... c'mon! I had the endometriosis, daughters have been diagnosed too. LOVED having the UTERINE ABLATION for that! GOD BLESS and keep you in His care on your journey. 
I was told adhesions is endometriosis. I had stage 5 endometriosis with o lot if adhesions in my uturus bladder bowel belly.
Confused. Adhesions/pudendal neuralgia
adhesions
Pelvic adhesions 
Pelvic adhesions, advice needed
adhesions from infection 
