Firstly its really great to find this forum - I can't tell you how grateful I am to be able to talk to people who understand what I am going through.
I was diagnosed with Endo 5 years ago after many years of bladder problems, gastro problems (which they fobbed off as IBS) and a bout of cystitis that became so chronic I had to be in bed for weeks before I was operated on. I was diagnosed with IC and Endo and had a Laparoscopy to remove the endo that was on my pelvic peritoneum and a cystoscopy that revealed no lesions on my bladder - although I was still diagnosed with IC. Personally I think that my endo is what causing my IC and my 'IBS'. Do you think its possible to have endo somewhere in your body with it affecting other organs in your body without it actually being attached to them?
My bladder has never returned to normal and every day is a battle with pain management. I was free from Gastro problems after my op until recently and I have been so ill in the last week. I was wondering if anyone else has gastro problems. I have terrible griping pains and nausea and fever - I have been to hospital twice and they say its gastroenteritis even though I am neither sick or having diarrhea. I have an appointment with a gyne and I am going to organise another Laparoscopy so hopefully this will help. I had all the tests like colonoscopy which although was excruciatingly painful came up clear. Feeling very lost and helpless.
Other than my physical problems I suffer terribly from anxiety - general anxiety and health anxiety - does anyone else suffer from this? The whole idea of going through the system of doctors who do not understand me, lose my notes and treat me like I dont knwo my own body and waiting for months for hospital appointments and indeed the actual operation itself fills me with dread :/
Sorry if I am ranting - I guess I have just reached a low point - I am tired of being sick all of the time - and nobody really understands - most of the time I suffer in silence. If anyone suffers from any of the above and has any coping mechanisms or knows of any triggers I should avoid then I would be ever so grateful.
Thanks guys xx
Best wishes,
Natalie
Written by
NatalinaE
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I had to reply as I have the bladder the IBS thing and awful gastro probs. its like my whole digestive system is playing up. I get bad diarrhoea with cramps im now on Lansoprazole for acid/indigestion and constantly feel I have a uti but often havent. I put it all down to having an endo flare up (cant face another lap had 5 already) my gynae said endo upsets the whole system so suppose this is what it is. I was in hospital twice with gastro and after many tests they muttered "well she has endo...." And sent me home with acid reducing pills. Just wanted to say youre not alone. Xx
Hi, Thanks for your reply. I am sad to hear that someone else is going through this too. Relieved that I am not going mad but sad you are also having problems. Ill let you know if I find anything that helps me. I am cutting out all wheat and dairy and sugar and starting yoga so I am hoping this will help.
I have also started yoga to try to stop my anxiety (not easy). I cant eat alot of fatty foods and have to take a tablet Lansoprazole for stomach acid now too.
Im sure its all due to the demon endo. hope your exclusion diet helps do let me know x
Your medical history is very similar to my own. I've stuggled for 9 years, my anxiety has been affecting my life for the last 2, to the point I drive rarely and some days struggle to leave the house. I'm on the waiting list for cognitive behaviour therapy, although I feel a lot of my anxiety is hormone related so one day I think I'm not too bad and the next is horrendous.
My gynaecologist that I've seen for the last 4 yrs is great but I feel like I've lost my battle with endo. I luckily have 1 daughter, (I believe my emergency c section caused my endo, I had a spiral tear to my uterus and was really poorly). I have always wanted a second child but couldn't afford ivf and after 5 laparoscopies, over several years, my gynaecologist said it was too damaged each time he went in it was worse than the time before, despite measures to stop adhesions. In may 2013 after a lap I was put on cerazette I made 6 months but spotted continously and my anxiety increased, I have then been on prostap monthly injections, which helped greatly with the pain but did nothing for my mood and anxiety!. I admitted defeat and 2 weeks ago had a total hysterctomy, bilateral salpingectomy and he found severe rectovaginal endometriosis, again despite prostap etc. My bladder and bowel was severely adhered. I feel like an old woman at the age of 37.
Sorry for my rant, I just wanted to say you're not alone.
I'm eager to see what advice the other lovely ladies give to you.
Sorry for your pain. I understand what you are going through. Its such a lonely and exhausting problem. With so many symptoms its hard to know whats going on and Doctors treat you like a hypochondriac. I hope that you are healing after your operation. Hopefully you wont have as many problems now and your body can heal xxx
I hope I didn't frighten you! Was feeling down. Last year my gynaecologist reccommended I start the interstitial cystitis diet which helped immensely apart from frequency, which I now know was caused by the adhesions. Since my hysterectomy that seems to have gone, I now don't seem to be going very much and not emptying it properly! Hoping its just healing. Just got to cure the anxiety, which I don't think will be easy.
Hi. I have a very similar history to you. Lots of abdominal pain, nausea and urgency to wee. I have been told that the hormones can effect your bowels. It also sometimes happens that stuff near it, within the pelvic area can cause IBS and the two (endo and IBS) can co exist. It is common as there is so much going on in such a small area.
I know - its makes it confusing to know how to treat it and whether I should go for more tests or try and fix through diet alone. I am sorry to hear you are having trouble too. Its very isolating and its hard to stay upbeat when you are anxious about whats going on inside.
Hi, I'm not yet diagnosed- probably got upto 10 weeks left yet and I do suffer with health anxiety so I'm going out if my mind thinking the worse!
It's horrible isn't it because you don't want to stress you want to get on with life but you can't because the pains/ symptoms are there.
I've got a lot, well all, the endo symptoms- I can separate myself from the anxiety and be objective and I know the mid cycle bleed is real, the pelvic, vagina, rectal pain is real etc
During ovulation and period most my pain is lower back and side although the constant pelvic pain is always there- just gets overshadowed with severity of the other pain.
Always feel I've got a uti too but havnt. Swabs clear- ultrasounds and X-rays clear. Clear smear 12 months ago.
With regards to gastro probs, had heartburn since had daughter nearly 3 years ago but bowel movement not been suspicios apart from odd constipation. Then over last few months I bleed from vagina with a b/m only during ovulation or just before/ after period. I had a misscarriage 8 months ago so initially they said it was that.
Then the last ten days ( during period and now a for 3 days after) I've had terrible cramps and diarrhea - white mucus in stool, dark stool, wanting to go but can't go- so now I'm even more worried.
Seems ibs is common with endo.
Just want my lap now - at least put mind at rest.
So I know what ur goin through with regards to th anxiety about it all. Ur not alone. Suppose we all need to stay calm but easier said than done .
I know - its so hard to stay calm when you dont know whats going on. Distraction technique is quite good - get busy trying to do other things. I have done a pretty good job of ignoring everything up until now and now I just feel so worried about whats going on. There are so many of us going through this! Im sorry you are in pain too. At least when you have the lap and they find endo you will feel like you arnt crazy and you can begin the healing process. I think I have actually been in denial for many years - since my operation. I have been carrying on my lifestyle as normal and eating what I want and working all hours - not really taking care of myself which has litterally come round to bite me in the ass now as I feel so ill and was bed ridden for the last week and have a hot water bottle permenantly attached to me. I am going to insist on another operation but until then I think a lifestyle change is the way forward and to try and reduce anxiety through exercise and yoga. Hmmmmmmmmmmmmm feel so tired of all the pain and all the worry! Hope you find out whats going on soon and hang on in there - there are so many of us in the same boat xx
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hope your exclusion diet helps do let me know x
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