Hello,
Ive had on going pelvic problems and have a history of family endo. After my recent hosptial admission from A and E theyve said i need to be seeing gastro.
Ive had a laproscopy to rule out endo. Theyve diagnosed andomyosis. But said that shouldnt be causing all the pain.
Im on 2 lots of morphine and a cocktail of meds, yet still have intense pain that some days mean i cant even walk.
My query is where do gastro start? What tests do they do to begin with etc?
Thanks,
Jess
Hi, sorry to hear you are in so much pain. have you had several operations due to the endometriosis? A hysterectomy?
I had endometriosis and due to the 6 operations and the endometriosis I was diagnosed with pelvic adhesions. This then led to a bowel obstruction and resection.
I wondered if they have considered adhesions or whether they are going to look at your bowel.
The gastro team looked at my diet and checked for allergies then moved me back on to colorectal team who found I had slow transit which is contributing to the pain. They also checked for diverticulitis
Hello,
Ive only had one laproscopy which resulted in them saying there is no endo.
Thank you, the diet bit sounds good to have a heads up about! I will start keeping a food diary :).
Hi I wanted to ask how you manage your slow transit colon and adhesion pain.
After 13 surgeries I have adhesions on pelvic area, bladder, bowel and abdomen. Also had endometriosis.
The worst for me is that I cant have a normal bowel motion and have to do trans anal irrigation and manual extraction daily. I cant use laxatives as they have no effect on my bowel .
I suffer from debilitating bowel spasms and pain and at its worse I cant walk and have to lie down for long periods. I also have limited movement around abdominal area as insides "stuck" together.
I take ammitryptiline which helps me sleep and 2 different antispasmodics. I have support from my specialist bowel and bladder physio as I also suffer from levator ani syndrome. I get internal/external trigger point therapy which does help with Intensity of spasms and pain. I also get botox injections into pelvic floor.
Any suggestions on how to manage symptoms would be a comfort as I dont really hear about others who suffer from this debilitating condition. Many thanks.
Hello Skye22, sorry to hear you are in so much pain and discomfort. I hope you can find some relief and get the help you need 😊
Not sure if you use social media but I’ve found a good slow transit and bowel group on Facebook
After the bowel obstruction they diagnosed slow transit and put me on prucalopride and movicol then when my consultant changed he wanted me off of them all. It was a shame as they were working without any issue.
Since then I have had long periods off of work due to pain and have had a nightmare with non responsive bowels ever since. He wanted for me to try irrigation but I was worried about the long term effects. He has now referred me to specialist consultant in London who said my slow transit was not the problem. The main issue was chronic pelvic pain from adhesions and due to allergies tramadol is the only painkiller I can use. He put me on Naloxegol which helps protect the bowel from the constipating effects of opioids. I use amitriptyline 10mg at night. I’m waiting now to see a pain specialist in London to see if there’s any other help he can give.
I now use movicol most evenings and the Naloxegol which has helped me with the bowel movements but it’s still a struggle and only 1-2 a week.
Have you tried any myofascial massage therapy for the adhesions?
I use a lady locally and do find it does free it a little but it’s not available on the NHS so it can be quite costly
Not sure if this is any use. I find it helps talking to people in similar situations
thank you so much for your reply. I too have tried various meds and similar to you I have allergies to certain drugs so I am very limited to what I can take. I take slow release tramadol morning and night and for breakthrough pain I can take 4 50mg tablets throughout the day. My physio does visceral abdominal massage to help with adhesion pain, its painful getting it donel but I do feel for a short period a lessening of the tightening around abdominal area.
I know what you mean about the irrigation if its only used now and again then your bowel wont be reliant on it . For me its the only way I can move my bowels.
It can be a long journey waiting to see doctors, get tests done try treatnents and meds before getting diagnosed.
I wish you the best of health and it is some comfort to be able to talk to others who understand what our daily struggles are.
Hi. How old are you my I ask? Andenomyosis is usually diagnosed in middle aged women and women who have had children. Is that your case? How exactly did they diagnose adenomyosis?
Are you having very heavy periods with severe menstrual cramps? Do you suffer abdominal pain and bloating to? What are your primary symptoms?
What does the pain feel like? Have you had an MRI? CT-scan? Ultra sound? Have fibroids been ruled out?
Gastro starts with a colonoscopy usually. Are your bowel movements normal? Are you constipated with this ongoing pain?
You could try helping your gut biome by eating plain yogurt or plain kefir, trying a probiotic and drinking kombucha. Keep us posted.
Hello,
Im 26 and have no children. They disagnosed it via an internal ultrasound.
Ive had a lap, mri and internal and external ultra sound.
The only thing was suspected adenomyosis so theyve added that to my diagnosis.
I have bad cramping/stabbing pains in my lower abdominal, back and shooting pains up my vagina. They get so bad i struggle to walk and do basic household activities and things like shower on my own. I have pain during sex and bleed (they have now said they want to do a cervical biopsy)
I dont have periods atm as theyve got me on constant contraception. When i was 16 i did suffer with heavy, painful periods. And more recently when i had 'break through bleeds' from the patch they were painful.
There was a lot of questions there aha, i think ive answered most of them!
Thank you for your support
I had adenomyosis when I was your age. It is extremely painful. Nothing touched the pain at times (not consistent pain - revolved around my period). Ovaries also caused frequent pain. My stomach and bowels were secondary, I think they are affected by adenomyosis, but not primary cause. Once I had the hysterectomy my stomach and bowel issues cleared. I am now 61. I have had bowel issues since I was injured by transvaginal mesh. They had gotten worse over the last 10 years. Often, even with miralax I was only going once a week. In may I had an endoscopy/colonoscopy to see if they could figure out what was going on. Later in the day after "normal colonoscopy" I came down with a fever and severe pain after eating. I was taken to ER. Ended up in hospital for a week. I had venous gases going tbrough the mesenteric artery in my kidney, showing some sort of tear in the colon from colonoscopy. Following this after healing (a week in hospital with no food or drink) I have been regular and no issues with bowel like before. I went to follow up appointment the doctors had no idea what was going on. I told them my theory that some adhesions were torn apart when the colonoscopy was performed and solved my bowel issue. All I got was "that's interesting ". Just putting it out here for thought.
Its crazy, that I've read and heard so many real life experiences of the pain yet when the gyne diagnosed it he said, it does not cause any pain. Even reading what it is on NHS website, it says it causes pain...
It is so frustrating the attitude of nearly every gyne i have met so far. The nurses that work in the hospitals have all been amazing, but I am yet to meet a gyne who is supportive and understanding. That will even take the time to lilisten, and will not talk over me or laugh/roll their eyes at my questions.
Your colonoscopy sounds like a horrendous experience!
Thank you for sharing your experiences.
They do see women who don't get pain from endometriosis. I believe it's because of where the endometriol tissue attaches. We have nerve beds in our bodies, we have areas that are not as innervated. Ovaries with endo cause a lot of pain. For them to say that to you shows their ignorance. I have printed out medical reports and taken them to doctors. I know your frustration. I had UTI'S every month for 2 years. I had a gyn tell me at the beginning I had infected kidney stones. I saw 3 urologists and 1 uro/gyn, top in her field. They all said that wasn't the issue. I cried at the last visit because I had practically become bed ridden again from all the infections. She said "you are right where we expected you to be. There is nothing that can be done." My husband grabbed me and said we're getting out of here. He was angry. I found another urologist. I went to him with tons of information printed out. He didn't even look at it, first thing he said was, lets get those kidney stones out. Then go from there. That solved the infection issue! I had gone septic in 2014 from a UTI and I was afraid I might go there again. I tell you, there is something wrong with medical schools. UGH!!
I think you’re should see a neurologist to.
Still no answers two years on
Very Desperate to find help - Laparoscopy Post Op pain 2yrs on - Not Getting Proper Medical care - Need Good Gyne/ Endo / Bowel Consultant 
Out of options and losing hope
Experiences with Provera 
Advice Please 
