Tell me it’s bowel endo without telling me it’s bowel endo

[allyshajohnson]

Dead End. Private or Nothing?

NHS is a dead end at this point and I’m having to go private.…..I had an appointment with my GP after I did a (FIT) a Faecal Immunochemical Test where they found, 17 ug/g. Which is out of range meaning that there was a bit of blood. Just a very small amount. (Not seen by the eye). My calprotectin was 80 (average is 50 and lower) I cannot help but feel that it been slightly raised and all of this is due to a possible presence of endo, especially in the bowel area….but my GP keeps dismissing thinking that endo cannot show up on such tests. I beg to defer. Im aware they want to rule out IBD which can be a possibility…but due to the nature of the symptoms I can’t help but feel like it’s endo and it can’t help but feel like that it keeps getting brushed over, even subtly.

Unfortunately my gyane initially refused MRI for no good reason so I had to insist and got diagnosed with adenomyosis. Unfortunately I asked for a MDT to double check over my MRI as it’s known that i can miss DIE and that they without a team it can also be missed but he refused stating that there was no evidence of endo on organs. Due to my low weight a lapro isn’t an option for me due to the risks. And due to dealing with osteoporosis due to low weight other options are scarce. He said no to IUD, cause I’m a virgin and difficult fitting (tbh I’m not keen with coil) and Pelvic Floor Therapy because I’m also a virgin and don’t deal with painful intercourse…I’m not keen about the pill due to the risks and it’s safety on my body as well as other hormonal options that he won’t recommend at the minute but the only option atm is zoely/combined pill. No NSAIDs/codiene due to GERD. Im only left to stuck on paracetamol. I dunno. Unfortunately on the nutritional side ED Clinic has rejected my case as well as NHS community dietetics. So my GP cannot help me with my weight gain in addition to options especially pain management etc. she also dismissed pelvic floor therapy. I feel like private is my only option and to be referred elsewhere n NHS would mean another yes and I don’t have another year to waste as I’ve lost all of my 20s :/ I dunno.

And yes due to the FIT test they have referred me to a place for possible colonoscopy but I stressed to the doctor that due to my body I might not be able to able to go through with bowel prep/heavy laxatives but they basically said that they cannot help me. I told them many times but again they said that they cannot help me and that there aren’t any alternatives for diagnosis without such a prep.

Like what about those that cannot do prep for medical reasons? Are they without hope? Such people do exist. :/….like your telling me I have to likely go through colonoscopy and all of the strain, when having a laparoscopy is almost inevitable and not consider how that will be for my body? For my physical, emotional and mental health. I feel emotionally neglected like they often care about the physical and emotional toll that this will have on me. Maybe I’m asking for too much…I don’t know anymore. I feel like I’m asking, for too much as my body isn’t fit or strong enough to handle such things. :/

[Allyneedshelp]

I had this… my FIT was 18ug and cal was 1509 I had the colonoscopy only to be told no issues!

Went back to the doctors and told them I’m still bleeding rectally and still having pain they finally done a gynae referral

Sent for ultrasound NOTHING showed up!

Spoke to someone over the phone from the gynae clinic who said I’m sure everything’s fine and we won’t find anything and you’ve probably got IBS and all that nonsense but they he said I’ll request an MRI but he didn’t feel as though it was needed

MRI results state adenmyosis present and deep pelvis fibrosis and a thick prominent adhesion from uterine serousal sac to lower rectum

Now I have to wait till March to hear back from the person who told me it was just IBS and nothing to worry about!

Keep pushing for answers!!!!

[nikogirl18]

I feel for you as I have had similar experiences! Tested for IBD before being diagnosis and have been through multiple tests for celiac, chrons, countless colonoscopies and sigmoidoscopies, endoscopies on the NHS. Eventually went private to have a lap and confirmed endo although my surgeon said no bowel endo…that was over a year ago and still have rectal bleeding and elevated levels in stool tests but gastrointestinal team convinced it’s nothing on their side of things. I’m convinced I have bowel endo of some sort and it’s been missed but trying to get the NHS to do anything now after going private is like taking to a brick wall 🥺

[allyshajohnson in reply to nikogirl18]

Hi, I’m sorry man….can imagine the torture of having to go through these procedures. :/ like I spoke to a endo nurse on endometriosis helpline and she said that it wouldn’t make a difference if I went NHS or private, buts like I don’t care, I need answers and if my gynae refused MDT to check my MRI then I would have to go private, more so cause he’s just a trainee. Like clarity and answers still mean something. Spoke to a gastro nurse to sort out appoint and by the looks of things she’s basically saying either the scope or nothing much else as all the other most of not all the other alternatives contain some sort of prep to do. I said imma speak with gastro first considering that their ain’t many options when she ask you wanna go ahead with the scope of speak with gastro first? Also my health practitioner dropped me after spending two years to look for such nutritional support (causes it’s hard to find in UK and despite more options in US, they are hard to access availability) asNHS haven’t been able to do that. So I’m left on my own to search again. Back to square one.