I'm wondering if many of you know anything about adhesions? It was reported during my laparoscopy 2 weeks ago that I have adhesions attaching my bowel to several things. The surgeon told me that she just left it, no explanation as to why. She noted that my bowel was 'loaded' during surgery, and I stated to her that I am constantly constipated and am having extreme pain with BMs - sweating, crying, the lot.
I went to the doctors, and the surgeon hasn't even mentioned my bowel being stuck to anything else in the letter to them. A very brief letter was written to my GP stating that endometriosis was 'found and treated'. I am left in the dark now as to what is happening with this, how severe it is, why it has been left untreated and why they haven't reported it to my GP.
PLEASE HELP!!!
C x
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dogdaft
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It wasn't the discharge notes, it was the actual letter sent from the surgeon to the GP. It just stated that patches were found and treated on my POD. Although, the surgeon mentioned after my surgery that my bowel was stuck and that she left this stuck, it wasn't mentioned in the letter. I'm honestly so confused!! Even the GP stated that the letter is very 'vague' and it's 'poor communication'.
Is this what's causing my excruitiating pain with BMs? is it something that they can treat me for or just leave? Very confused!! Do I have grounds to be referred to the local pelvic pain unit? AHHH
I also was told I had adhesions sticking my bowel to my left ovary but they carried out adheiolysis during my lap and removed them. I would question why the surgeon didn’t release them as they can be the reason for all the pain cx
When I spoke to my GP she was pretty much clueless. I asked her if there would be a follow up and she stated that I wouldn't have one until my symptoms returned. Fighting so hard for answers and no one seems to want to help!! xx
When I was at my GP appointment yesterday, I asked if i would have a follow up. She said that no further action is required until I have symptoms again! it is SO frustrating. They're just feeding me laxatives at the moment to keep my BMs 'regular'. Surely that's not normal?
Yeah, they spoke to me whilst I was still totally out of it! I'm certain that's what they told me though. I'm really not happy and if symptoms persist this badly with by bowels I will be persistent on getting an appointment with someone in regards to it. I really just feel so disheartened, I feel like I'm getting nowhere and that they have fobbed me off!
The surgeon told me that she doesn't need to ever see me again and that's it, like it was some miracle cure. I feel like I really need answers!
Hey that sounds exactly like my situation. The surgeon told me stage 1 endo in various areas and that she was happy to discharge me but I was a bit out of it. I definitely remember her saying endo was found though. She gave me a letter to hand in to the gp which was very vauge although it said stage 1 endo in various areas found. My gp had the cheek to ask me where I got the idea that I have endo from. The surgeon has been on maternity leave so cant get hold of her. Ive been to the pelvic pain team in Edinburgh and they were pretty useless. Basically said since the coil didnt help that it cant be endo ive got. Still would be worth a shot for you to try it. I hate how no doctors actually listen to and believe us when it has got anything to do with endo, treating us like we are hysterical women. I hope you get the answers you're looking for and dont ever stop pushing for them x
Hazel, it sounds like you've been through a horrendous time of it. I will be going to the Edinburgh unit also. I have told them that I do not want any hormones of any sort, whether that be the pill or the coil. I have a VERY extensive history of breast cancer in my family and I have had severe depression in the past, hormones just do not agree with me. All i keep hearing is that with the coil, hormones are localised to the uterus. I DO NOT want it, and they just will not respect that!!
None of the specialists/GPs are happy with this at all. It is MY body and my choice. I don't want to pump my body full of hormones.
My endo symptoms never appeared until I came off of the pill, and it was found and treated on my pouch of dougla, so if anyone tries to tell me that I will simply laugh in their face! The treat us like crazy women! x
Was this an endo specialist surgeon? Or a general gynae?
You have a few options... If its not been done by an endo specialist, then request that your GP refer you to the nearest centre. If the endo is affecting your bowel, you meet criteria (Look up NICE guideline for endo of you don't know this already as it's good to have this info for the GP). If your bowl is involved, you need an endo specialist
You need to know what specifically the surgeon did to 'treat' the endo. Do you have know what they did to remove it?
Have they not suggested any further treatment or even a follow up? Yet your bowel, the main cause of your issues, has not been touched? This seems shocking to me. The reasons for this needs to be explained to you. It could be that surgery on your bowel was thought to be too risky or unlikely to help (maybe fair enough) or it could be that the surgeon was not a bowel surgeon and didn't have the skills (so, not ok to just discharge you).
If I were you, I would contact PALS (patient advice liason service) to help you get more information and find out whether you need to get further treatment or not.
I'm so angry on your behalf that you've been treated this way. To go through all this and not get sufficient information is awful.
I am so frustrated!! to answer your questions, the endo was on my pouch of douglas and I don't think it was directly on my bowel. I'm wondering how they would be certain it wasn't on my bowel if they haven't separated it from whatever it's stuck to. But I am having such painful BMs, agonising! I'm sweating, crying and don't go to the toilet for 4 days at a time. This doesn't just happen when I'm constipated, but with every bowel movement.
I asked my GP yesterday whether it was an incision or ablation procedure carried out and she was absolutely clueless. If my memory serves me correctly, the surgeon stated that she 'burned away' the endo. My GP said she would try and get a hold of the surgeons secretary for more information but I don't have much confidence in that. She is referring me to the pelvic pain unit but she said the endo centre probably won't see me as it was 'mild' endo and treated at the time. She stated that there will be no follow up at all, apart from when my symptoms return.
I'm at the end of my tether and just feeling hopeless! X
I have adhensions from a total abdominal hysterectomy they won't do nothing about them. IV have tried everything it can make them worse if they operate to remove them.
yea adhesions are scar type tissue that looks abit like string, and stick to different organs when they're not meant to be there. I was also found to have lots of adhesions all up the right side of my bowel. I assume it was endo related but they never really knew why. You get them after surgery, but id never had surgery before so didn't explain mine. in my case they cut out the adhesions (adhesiolysis), which I would have thought they should have done with you, but maybe they were worried if the bowel was distended they could have cut it by mistake. surgeons dont tend to do surgery just for adhesions as the surgery itself will cause more adhesions. only if you get an obstruction will they go in and release them
Adhesions are what the Endo causes when over healing. The Adhesion cause more pain. They help cause the distortion of the tissue in areas. They might cause organs not to function properly in the worse case. They do often bleed in the month as there might be live Endo there. When they bleed the pain caused by the acidness in the blood that burns and the reaction is inflammation and swelling. The nerves in the body send out messages which cause further pain/issues and also reflected pain can be felt in other areas. Over several years the Adhesions are similar to scaring in being tough and less flexible which cause discomfort and pain. The left of the pelvis, trunk can be more effected and that side of the body also has the scarcal nerve which can enhance pain, reflecting to the spine, groin or legs. Adhesions can cause nerve damage and also make digestion or bowel movement difficult with the inflammation.
Sorry to hear about your adhesions. Have you got anywhere with this since posting? You can ask to be referred to a pelvic pain/endometriosis specialist. There are several centres across the UK who specialise in these types of difficulties.
Aside from pain, the main concerns about adhesions is the possibility of bowel obstruction. I was recommended to follow the FODMAP diet which brought some relief. It’s a process of eliminating food groups to find the troublesome ones. The adhesion symptoms are often worsened by bowel gas. I also found acupuncture and taking high dose Turmeric helped to reduce inflammation.
I had a total hysterectomy last year after years of gynae problems and previous surgeries. It seems that my adhesions started after having my appendix removed as a child. Successive gynae surgeries and an umbilical hernia abs bowel obstruction worsened everything.
Luckily my gynae surgeon (Miss Ball@Barts and the Royal London) was a pelvic pain specialist and lysed my adhesions during my hysterectomy surgery. I had multiple dense adhesions connecting my left ovary to the pelvic wall and sigmoid colon. Recovery from surgery took a good 6 months but touch wood I’ve been ok since. Often gynae surgeons have to call in a colorectal surgeon to assist due to the potential for complications.
Do chase things with your GP and ask for a referral to a pelvic pain specialist. There are details of specialists on the pelvic pain support network website. Good luck
I’ve had adhesions for years. They don’t like to remove them really as they just grow back. Mine were sticking my bowel to my pelvis four years ago, they were all removed. An then I had another laparoscopy two months ago where again they were sticking my bowel somewhere again . I’ve always had problems going toilet used to constantly be constipated until about three months before my lap (which was to do with my tubes )ago it changed and was more like constant diarrhoea so I was convinced I had IBS or Coliac or something.asked the surgeon before my lap if he could give me an mot an remove any adhesions if he found any which he did and since for the first time I can actually ever remember I go the toilet normally no constipation no diarrhoea just normal , but you don’t see a bowel specialist it’s just left really as they will come back and that’s why they prefer to leave it
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Adhesions/scar tissue/endo - all related?! Also rectal bleeding related to the condition? Confused!! :(
