New and looking for advice (poss bowel adhesions?)

[PandoraPenguin]

Hi All! I am hoping that by posting this info I might find someone who has had similar symptoms who can give me some advice.

In 2012 following on from a long period of left side abdominal pain (started suddenly and episodically and then became constant) I had a laproscopy where adhesions were found which had pulled my bowel out of line. These were removed and I was then fine. I was never referred to see anyone to check my bowel had righted itself, never struck me I needed to until it was questioned by my new GP! I was given a laproscopy as the surgeon at the hospital that I saw said my problems were gynae and the gynae department were sure I had endometriosis, no sign of this was found.

In November last year I was taken to A&E twice in severe pain which nobody has gotten to the bottom of although it was suggested that I was constipated (I refute this!). I had x-rays and an ultrasound. The pain has now developed to almost constant again and is left sided, mostly a sore burning feeling but at times a nagging poking/twisting pain. Some times is it much stronger than others. I have issues with my bowels now and am taking Macrogol to keep things moving; this follows the pattern prior to my last surgery and makes me think my bowel is out of alignment again.

I am currently waiting for a urology appointment in 2 weeks (ultrasound showed a simple cyst on right side kidney) for a follow up and colo-rectal in February to try and get to the bottom of the pain. I changed GP surgery in November and these seem to be quite pro-active in getting things checked.

In desperation I went to see a GP on Friday as I was in real pain and it is starting to affect my ability to do my job properly. She gave me a good going over, it hurt, and read all my notes and she said her assumption is adhesions again as I don't fit with any other diagnosis she could think of. She also refused to try and accelerate the hospital appointments as I am not urgent. She said that even if I have adhesions that this has not caused a blockage that she can feel so I will just have to wait.

Does anyone have any suggestions for coping with daily pain? I am, to be honest, feeling a bit worn by it as it is now almost constant and it's depressing.

Cheers.

[PPSN_JudyB Pelvic Pain Support Netwo]

Just wondering ,are you taking any medication, have you had any physio and do you exercise at all ?

[PandoraPenguin in reply to PPSN_JudyB]

I take Dianette (the pill). I exercise regularly - circuits, core strengthening, high intensity interval training, general gym cardio stuff and sometimes I swim. Not had any physio.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to PandoraPenguin]

Maybe worth asking if you can try something to help with the pain, amitriptyline is usually the first thing people try or you could ask about physio ?

[PandoraPenguin in reply to PPSN_JudyB]

I asked about pain relief as when I was really struggling before I had Tramadol precribed. I was told paracetomol or Ibuprofen for their anti-inflammatory properties and to just go to A&E if I got a bad flare up and was concerned. Whilst the GP was thorough in her examinations and reading past notes I felt she was a bit dismissive. Kind of a case of you've been referred by this surgery in November I'm looking at you and not seeing anything urgent so clear off and wait it out!

She also, without prompting, said if I couldn't wait that I could go private but that whilst the consultation would be reasonable any treatment prices would be cripplingly expensive - something along the lines of she had been there, done that! I'm not going to go back as I have only recently registered with them and I can get appointments in a couple of days if needed and I don't want to get struck off as lots of Drs round here are useless. My old GP I could never get in to see unless I knew in a week in advance I was going to be ill and quite a few round here do a telephone consultation then write a script or invite you in, I cannot do this because of work.

PS I Googled amitriptyline and it came back as an anti-depressant?

[PPSN_JudyB Pelvic Pain Support Netwo]

In large doses it is an anti-depressant but in low doses ( usually 10-20 mg ) but under 70 mg it can help with persistent pain. It is a first line treatment for pain in the guidelines. Nortriptyline is another that is used for this.

If you have a private consultation and treatment is required, you don't have to have the treatment privately. It should be possible to follow up with the NHS.

[Sarisota]

Hi, I had adhesions cut during a laparoscopy in September then had to have a laparotomy in October due to a benign pelvic mass plus other things. Since having this surgery I've been in so much more discomfort and the pain I am experiencing sounds the same as what you are experiencing. As I understand it, when adhesions are cut/removed, in the majority of cases they reform even worse. I take paracetamol and Cocodamol and they don't even touch the pain. I don't know what the answer is, wish I did. I know a lot of people suffer because of them and there doesn't seem to be any cure. It is quite depressing. Did you have surgery a few years ago that might have caused the adhesions? I had a hysterectomy which I believe has caused all my issues. You would have thought in this day and age they would have found some sort of way to prevent adhesions from forming. I am going to try yoga and Myofascial release once I feel properly healed. I do find walking can ease the discomfort a little as long as I don't walk too far. If I find a something that helps I will let you know.

[PandoraPenguin in reply to Sarisota]

The only surgery I have ever had was to repair an umbilical surgery when I was in infant school, I'm 37 now. There was a suspicion of a burst ovarian cyst in Nov 2011 but that was more because I was female, not pregnant, no kidney stones and in agony. An ultrasound 3 weeks later showed no cysts but did show flui in pelvis. A week later I had the same pain again and again they said cyst but could not explain how given a week earlier none showed. A general consultant said he thought I had women's troubles and sent me to gynae. They said I had endometriosis and did the lap which was when they found the adhesions.

The current GP surgery seem a bit baffled and are hoping either urology next week or colo-rectal in Feb can solve it.

[PandoraPenguin]

Well urology have been seen. They took a case history and a sample which has been sent to the lab then did an examination of my abdomen - ouch! They are not convinced that I have anything wrong in the kidney area but have referred me for a CT scan in case I have a non-typically presenting case. I think it was a case of better safe than sorry! If I don't hear about the sample then it was OK. They will summon me for the CT and then only contact me after that if they see anything that needs looking into. The general feeling was that it is probably an issue that the colo-rectal team will have more idea about. Just over 2 weeks wait for that one.

[PandoraPenguin in reply to PandoraPenguin]

Just thought I would update this in case anyone has ideas or similar issues

CT scan showed a small kidney stone not causing an obstruction; to be reviewed in 6 months.

Since then I had escalating pain which I sat on for 4 days before going to the walk-in, no point in trying GP with her attitude. Urine sample showed blood, pus and protein so anti-biotics given.

Colo-rectal consultant was a condescending wally. He was quite dismissive of my thoughts about adhesions as "they rarely cause pain". It felt as though he couldn't give me a swift answer or tick a box for a diagnosis so he was just going through the motions. He told me to eat more - easier said than done with stomach pain. He has told me to go wheat free for a month and has me booked in for a barium enema next week (scared). He prescribed me something to ease pain but when I spoke to the pharmacy they said it can cause the runs. When I Googles it the studies also show it's pain relief is little above placebo level in blind tests so I have given that one a miss! The wheat free does not seem to have really done anything. I keep getting really bad pain spasms which strike at random, like someone has punched me in the gut, but then take ages to subside.

[PandoraPenguin]

Wow an old post popped up in my feed. I'll update in case this is of any use to anyone.

Barium found nothing wrong and the Dr basically told me to live with it. He reluctantly put me on for a routine laparoscopy but felt he would find nothing. Pain continued and I ended up on a daily diet of Tramadol, Co-codamol, ibuprofen and lots of supplements with a bottle of morphine for bad days. After lots of pinging round a Dr suggested endometriosis. After a transfer to a specialist centre it was discovered that I had adhesions, pelvic congestion syndrome and endometriosis. I was seen an operated on quite quickly and I was in recovery when the horrid bowel Dr's clinic rang and offered to do the laparoscopy 2 days before Xmas.

Apparently the previous adhesions were caused by the endometriosis but the Dr was not trained enough to know this and the specialist was very dismissive of the handling of the case by the other hospitals. I did put a complaint in but the response I had was poor and some of it was not even related to me; things like saying I had a partner at appointments when I attended alone and discussions related to symptoms I don't have.

Sadly, 2.5 years on I am starting with the same symptoms again.