Hi, just wondered if there is any endo sufferer out there who has endured multiple surgery over the years and having problems with pelvic adhesions? I find sitting for more than a few minutes makes my right pelvic area really ache and pull and makes me feel nausea although im not actually sick, I am woken every single morning early with pelvic and bowel pain when i believe my bowel and bladder full the adhesions pull on other organs it really is painful and I twist and turn in bed and pull my knees up to my chest to try and stretch out the pain. Going to the loo helps a bit but my sleep is badly affected and but for sleeping tablets and pain relief which runs out about 4 or 5am in the morning I would be even worse off. Strangely when im upright or walking it eases a bit, when i eat it pulls and aches and gives me lower back pain. Having colonscopy to check bowel and had laproscopy and hysteroscopy previously but pain came back, now they want me to wait and see what my menopause does (im 51) then may try hysterectomy but warned me this would likely cause more pelvic adhesions and subsequently more pain!! Has anyone found any particular painkiller more effective for adhesion pain that helps me sleep, tried amyltriptyline which gives me awful nightmares, take co-drydamol or co codamol, surely there is something stronger i could take at night any suggestions. Have IBS symptoms too plays havoc with this condition. Lastly, if anyone has similar experiences I would be interested to get some feedback. Jules
I am sorry to hear that you are going through this.
I have had two surgeries. 1 when I was 7, I had bowel surgery and a lap to diagnose stage IV endo 4yrs ago. The doctor said I had such severe adhesions from my surgery from when I was 7 and the endo, well that was a different story.
4 yrs now and I am having similar type things but not quite the pain. I am not sure if its because I am on the pill continuously but the only pain I get is from my bowels and bladder. I had endo all over both of them with a recto-vaginal nodule.
I feel like they are twisted and I am having a hard time going to the bathroom either way without pain or restriction.
I had a cystoscopy done and there was no sign of any inflammation, and they cant see whats on the outside so I am back at square 1.
I am going to be told to get another colonoscopy done in which I know its not that but I have to amuse them.
I always though I might have some food allergy that makes all the stomach pain worse but who knows.
I do know that the more surgeries you have the more adhesions you will have.
I have this ball rolling technique that a good friend of mine shared with me and she swears by it. She had dramatic changes in adhesions by doing this her doctor was extremely shocked.
Hey sweetie! I know all to well how you are feeling. In 1991 i was diagnosed with Endometreosis. I had a hysterectomy at the age of 25 and ovaries removed one at a time in 96 and in 97. In 7 years i had 13 surgeries and 4 more since 1997. I started having excruciating pain about 8 years ago and like to never found a Dr that would even go past the first visit. I did find a wonderful doctor that specialized in Pelvic Pain. He told me my insides were covered with adhesion's. I ended up loosing my job and there for lost my insurance. I am now on disability and that wonderful Pelvic Pain specialist doesn't take my new insurance. I have pain if i lay,sit or stand to long. My intestines are covered and in every surgery i have had they were adhered to something inside. I live in pain every day. My pain management doctor just put me on Butrans patches. I hope they help me better. I have tried so many different kinds of medicine. Been through physical therapy and had injections. None of which worked. I have days when i will have BM's 8, 9, 10 times a day. And all the while breaking out into a sweat and doubled over in so much pain. I don't have any problems with constipation...It's just so painful to go. AND I HATE THOSE DAYS. It is a constant feeling of someone stabbing me or wringing my insides like a wash clothe. If you have any ideas or hear of something...Please share on here. I am at my wits end. And i don't want to live the rest of my life like this. I'm only 44
I am now past mid century and my menstruation has ceased but I still get this awful pulling, stabbing pain in my right pelvis, low back and hip pain but only on the right side. I previously was put on Zoladex injections monthly with synthetic hrt Tibolone to send me into pseudo menopause but this did not work for me. The gyne told me this told him adhesions were my main problem. I still get bowel problems made worse no doubt by Diverculitis on top of my adhesions. I have since found I have osteoarthritis starting in both hips and recently had right knee surgery for a meniscus tear and they found very advanced osteoarthritis. This just confused me more! I began to think, maybe the source of my pain is not down to adhesions after all but my Gp believes I am having pain from the adhesions pulling on nerves after years of multiple surgeries for endo and adhesions complicated by the Diverculitis Disease and worse still from onset of osteoarthritis in my hips and right knee - great! Gp is trying me on Lyrica a nerve block for pain which so far slightly dulls the pain but it is still very much there but I will keep trying. Otherwise so far the Co Drydamol along with stool softeners (otherwise codeine constipates) helps most. I do take the odd Ibuprofen 400 when pain is at it's max at the same time as the inflammation is dealt with by Ibprofen and the ongoing pain by Co Drydamol. However, nothing completely kills the pain, it just takes the edge off it. I am too petrified to risk having a radical hysterectomy as I was also told at a talk by a endo specialist surgeon at an endo support meeting that the only way to deal with endo and adhesions is a radical aggressive approach of total removal of both and even then it does not always work.
He said removal of both ovaries is paramount as endo sufferers have a greater risk of ovarian cancer! So I am just carrying on trying different meds and often resorting back to my Co Drydamol when they don't work.
I do believe had they given me Zoladex injections right at the beginning of first signs of endo/adhesions I might be in a better place. I believe they now tend to use Zoladex injections (although expensive) to send new sufferers into temporary pseudo menopause to zap the oestrogen which feeds the endo and helps stop it proliferating and taking a toll on your internal organs long term, thus saving multiple surgeries. Unfortunately it was too late for me, they tried this approach after years of surgeries and the damage was done. I still suffer pelvic, stomach, bowel and bladder problems and low back and hip pain into my menopause which are no doubt complicated by other newly diagnosed conditions on top of the adhesions. I rely on sleep tabs to get some pain free sleep and pain meds and bowel meds and anti spasmodics such as Colpermin, Fybogel and Merbervine just to function at all. I feel in my circumstances it is a case of pain management. Mindfulness Meditation can bring temporary relief by refocusing the mind away from pain but again, not a cure and of course the good old 'hot water bottle'.
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