Hi all !!
Wondering if any of you have severe bowel transit due to endometriosis?
At stage I cant eat solid food for last 8 years can only digest a ham sandwich!!
I had endometriosis for 20÷yrs and had a hysterectomy then after all those yrs found I had crohns as well.
I am wondering if 13 operations for endo on bowels ect has a affect long term on our intestines?as I'm going round in circles with my specialist !! Just wondered anyone exsperiencing this .
Hi
I know you posted quite a while ago, hope you don’t mind a quick question. Did you resolve your issues with eating?
Really struggling at present with food.
Many thanks
Hi moon_maiden I am still in process off trying get sorted obviously 2 appointments with saint Mark's hospital london have been cancelled due to conovirus. I am waiting to see intestinal failure unit their .What's happening with you ?
Hi
Many thanks
That’s a long time to get help, still not sure why so many appointments are cancelled, at least if you had a phone call it may give some insight.
Do you have any rough idea of what may be happening? You must be feeling so uncomfortable at the moment.
Mine kicked off end of 18, the eating started to be an issue December just gone. Had a lap and a Helica treatment for endo beginning of Feb, unfortunately didn’t do much. Saw consultant the other week, he said Zoladex which I started last week, for 6, then MRI. What he thought initially was a small amount of superficial become more and around bowel area, now thinks it’s deep. He’s hoping the Zoladex will kick off menopause, as thinks surgery could cause complications, assuming it’s likely in the bowel. I’m not sure the GP believes any of it, even with the letters.
Hi,
Not really have been like it for 8 years so learnt to be patient .
At moment don't even know if I have been referred as no response form intestinal failure,as I am under a professor their I have to wait see if she will refer me.what is your problem with eating?
Have you tried calling her secretary?
Kudos for managing so long. If you’ve any tips for managing and patience would be great.
I couldn’t do it for so long, I’d be literally battering someone’s door 🤣
If I eat too much my abdomen goes ballistic, increase in pressure, pain, this goes up to diaphragm and then kidney area decides it will join in. Loo lots. Some of it is definitely constipation as Laxido helps a bit. All of it kicks in an hour or two after eating. Sunday had piece of toast, roll and tiny amount of cheese, slept better than in ages, less pain, etc., yesterday half piece of toast, tiny piece pizza, then half small jacket, salad, piece steak about the size of two fingers, didn’t sleep until around 3.30/4am.
I think it’s too many years of letting bad periods slide and now doesn’t want to work. I’m 52 and GP’s last year said/asked nothing about gynae issues, I think they automatically assumed menopause, I know one did for sure. Told me to expect UTI and kidney stones at my age.
Also have fibroids and enlarged/distorted uterus. He doesn’t think fibroids are an issue. He couldn’t see one ovary due to uterus.
Do you manage to work? I’m relieved this furlough is on place at the moment. I was struggling as can’t sit upright for long.
Hi for a first I would say see a gastroenterologist!! I became a more patient person when treatment after treatment failed for my crohn's disease, which they didn't pick up for 20+years due to endometriosis .I had a stoma which also failed🤣 I had to come to terms for many years that I would have to do the best in the situation and become strong and do lots off research,so that I could ask questions and not let specialists try belittle me. I had lived on liquid diet for 5 years .I am sorry you are going through all this what I would say is believe in you and what you are going through and stand your ground with specialist s.
I cannot work due to severe pain struggle to stand and can't sit up for more than a couple off minutes.
Can you list your symptoms?😀
That’s different it’s normally IBS etc they opt for first, then eventually endo.
I have wondered whether to consider other things, two gynaecologists have said it’s endo, etc related. Saw GP at out of hours who was a gynae few weeks ago, couldn’t have been better timing and prescribed the laxido. She said she’d do hysterectomy.
At the moment I can’t sit for long either, not upright, driving is the same. Pressure and pain kick in, constipation, plus loo lots. I have a recliner at home, but then have to normally lie down for a while.
I haven’t had anything today apart from a coffee, chai and small piece watermelon.
Eating more than a slice of bread just starts the pressure in pelvic area which rises and then kidney area in back. Sometimes nausea. Weird really.
Always had bad / irregular periods.
Also told GP at some point that get twinges sort of slightly to the left in chest, but put it more down to muscular.
Kidney levels did go up and down a bit last year as well.
Shopping yesterday was a killer so probably didn’t help. I can’t do much activity generally, 15 mins in the garden sets it off, bending especially.
Doctors and me not really getting on after last years fiasco, when I saw the consultant I’d written notes of history, some print outs of online records and he could see all the urine tests on his computer that had been done. I just gave him the notes 😆. I didn’t have the eating thing at that time though. No hesitation on endo.
I also do some holistic therapy, two or three evenings a week, but ended up cutting this down at times. Hate letting people down.
I dread the thought this could be irreversible. I have to give Zoladex a chance, but if no change after a couple of months will see about MRI sooner, really don’t want any organ failure.
I think it’s fantastic how you’ve coped, must be so hard at times. Do you have family to help?
Once upon a time I worked in horse racing, including a few races, so was very active.
The NHS could save so much money if they just got on with diagnosis correctly. Heaven knows how much I cost them going back numerous times.
Sorry ended up longer than anticipated.
The other thing I get is feeling shaky in the abdomen with some movement, which he said could be the endo and nerve being trapped. Bit of a guess as no one had said that before.
They put mine down to IBS for along time then after having all lady bits out and zoldex they realised I had crohn's disease as well as fibromyalgia and ibs which is linked to endometriosis, I also cannot pick bags up my hands go numb when on the phone or typing,bend,sit or when I lay down my right groin all up right side can feel liquid air or food trying to go up ! Do you have tingling in hands legs and feet or burning in legs.pain and pressure groin all up right side.
I am sorry you had give up work it is very frustrating for you.ah you must so loved horses! How many hands stall?
Yes have 3 children and husband I find ways off coping and struggle on even when pains severe and get blockages really feel for you.yes I was told nerve damaged then they found more crohn's like they unravel more bits each time. Is it your bowel twinging.
Glad you’ve got family around 😊, hard sometimes, but keeps life going.
It’s been a few years or so since worked with horses, just keep comparing what I did to remind myself this isn’t normal for me. I used to do Arab horse racing, they aren’t huge apart from the odd one around 16hands. It reminds me as well to not just accept what a doctor may suggest. Been working in office mainly.
I don’t get pains in legs or arms so far, I understand the issues though. I’ve seen similar in other people, especially when fatigue builds up. Still getting ‘appendix’ type pains at times. The endo was that side on the pelvis as well as other side on bowel and surrounding area. There are fibroids between uterus and bowel, he gave me pics 🤣. I find it fascinating though. Tempted to ask if video!
After op I remember him saying he’d done his best, but was still not with it, came round next morning with more info.
If the Zoladex works by the time the virus is over might be ok. Well can but hope.
What sort of things are you doing to keep occupied when you can?
Yes you definitely have to remind yourself what you where like it give you the strength to keep fighting, sounds like you had a amazing job . My pain is in appendix area had that out a whole hysterectomy this is why they they are baffled but crohn's disease also gives pain in that area too.hope the zoldex help,I love music, funny film, baking when I can,and cleaning house have to do a bit rest act! Can't they take the fibroids out?
Do you think there is still endo hanging around in the bowel or pelvis? I know it’s as difficult to treat crohn’s as much as endo. I’ve tried to research why there’s a link, not sure they have any ideas.
At the moment I want to say take it all out, feels like alien is trapped 🤣
If the jab doesn’t work , they’ll see more weight loss at the next one, she might make some suggestions.
I like sci-fi and fantasy type films, so many channels but getting bored with TV. Could go with a decent comedy being made.
When I had a stoma bag asked them to check for endometriosis or more crohns! He missed my crohn's had spread so anything is possible !! I remember feels like a baby was inside when had endometriosis bizarre feeling.Are you loosing weight?
Do you have Netflix can pick lots programmes on their!!
I would think they’ll do an MRI to take a good look, possibly worth asking them to check.
I am losing weight, at home it seem to fluctuate a bit, likely due to endo bloating and uterus. I hadn’t see the nurse for ages, she thought I’d lost weight. Told GP a few weeks back that wasn’t eating much, didn’t really have any suggestions.
Netflix has had some good series on, Locke and key, another buffyish type family after other creatures, amongst others. Even some of the films/series from abroad are good. Amazon has some good things as well.
Hope you get on ok and start too feel better .
Ca125 levels raised 
Tired of Food
Is it hereditary? 
Mirena coil for endometriosis 
Anxious, confused and wondering if I have endometriosis! 
