So my consultant says he may be being over cautious regarding a diagnosis and won’t diagnose me yet as he wants to wait for Gastro to say it isn’t crohns, he wants ophthalmology to see me first (1 year wait) in the meantime I’ve showed him photos which he said confirm the genital ulcers and possible positive pathergy test. I’ve had bloods taken yesterday for pre immunosuppressant and pre biologics labelled “increased risk of progression” but he doesn’t want to start me on those meds while I’m still undergoing diagnosis. He mentioned that I may have to be referred to an excellence centre for Behçet’s which there is 3 in the UK but I live in wales and they’d need to agree funding before accepting me as it’s all in England.
One thing he did give me was a steroid shot as I said I may look okay but I have a poor quality of life ie back pain joint pain and swelling, now the shot for 24 hours made my back go stiff BUT it feels so much better already.
Has anyone had steroid shots to help with inflammation and how often do you have to have them and how long does it provide relief for?
I’m currently on colchicine 500micro grams a day, I’m reluctant to go up in the dose as my stomach also plays up and has only just settled on this dose after being on it since may. I’m also on triple mouthwash but I do still get clusters in my mouth and genital ulcers.
Has anyone going through diagnosis been put on Aza? Or have you had to wait to be diagnosed first? I feel I need something more than just baseline meds and I really don’t know how to keep fighting this “possible diagnosis” it’s really getting to me now, it’s all there, and I don’t know what steps I can make.
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I also live in Wales and it took until 2009 until 3 years ago to get a diagnosis although it was tentatively brought up as a diagnosis many times.
I am on 2 Colchiccine ,200mg Hydroxychloroquine and the 3 in 1 mouthwash and initially they helped, although the colchiccine really upset my stomach and bowel, but this year I have suffered so badly with longer flares and severe inflammation in my leg. I am due to start Azapriothine and prednisalone on top for six weeks but currently have multiple infections and a bowel blockage .
I was fortunate in 2011 to be referred to St Thomas`s Lupus Unit who made a definitive diagnosis but when I returned to the care of my local Rheumatologist they decided it was UCTD or MCTD. I have been told now I cannot be referred out of country as my Rheumatologist has the expertise to care for me. From the experience of others I have not encountered anyone who has successfully had the request considered. I guess it will be different if your Rheumatologist supports the referral.
Which part of Wales do you live I ? I am in South Wales.
I wish you the very best of luck. Please update when you can xx
Hello lovely! Thank you for taking your time to reply to me. Oh my gosh it’s such a long time to wait isn’t it. I really don’t know how they can retract especially after a specialist has confirmed it, it really is annoying and undermining.
It doesn’t seem like they have the expertise to care at times does it. I wish there was some centre in wales where they are on ball with things like this.
I get stomach problems too, I told my rheumatologist if he were to up the colchicine then id possibly struggle with that dose. Same here at first they seemed to help, but atm I’ve been in a flare since June. The back pain and joint pain has been relieved since having the steroid shot on Monday but I’m wondering how long that will last.
I think my rheumatologist may not want to make the decision complete himself and I have a feeling after what he said that he is considering this referral.
I live in Newport in south wales.
I’ve just had to go to the GPs this morning as I was given eumovate for my face when it flares but I’ve had a reaction of some sort and it looks like I have slap cheek! Dermatology were not helpful when I rang and told me any concerns go to your GP, even though they were the ones to prescribe it. I get like acne puss spots all over my face, and my body, so they’ve given me an acne gel now. It just feels like you’re fighting against everything at times doesn’t it.
I hope aza works well for you, please let me know how you get on. Did you have to have bloods first? Xx
Ahh I understand why you ave problems if you live in Newport. I am in Tredegar. We share the Aneurin Bevan Healthboard and having been under most of the Rheumatologists I have had truly appalling care. One even told me look you do not have either Lupus or Bechets you have Fibromyalgia and “hysteria”. He wanted to discharge me but thankfully my GP was furious and complained.
I think they totally underestimate the impact on our lives from pain and discomfort. My bladder started voiding when I have genital sores and it was only when I saw a post here that I realised there was a correlation between Bechets and incontinence but my Rheumatologist does not seem to want to discuss it. I had a camera down my throat and they found my oesophagus and upper intestines were covered in bleeding sores. They biopsies for thrush but it came back negative. I asked what are they then and all I got was shrugs.
Like you I have really suffered this year. I had nasal surgery in February then haemorrhaged. My left leg became stiff and then increasingly painful. I am walking like it has a rod in it. I cannot bend it. GP`s refer me to Rheumatology. Rheumatology prescribed six weeks of steroids and I began to walk better but as soon as they wore off the severe pain returned.Since then I have been shoved back and forth with no one helping at all. Then my bowel blocked when I was given five laxatives a day and I ended up in A&E after three weeks. Now I have an ecology infection in my bladder, a painful, spasming gut, genital sores, mouth ulcers and the painful leg has caused sciatica. I am as miserable as sin. I told my Rheumatologist I am nobody’s bloody problem .
We definitely deserve better than being fobbed off. I had my Aza script through the post with stickers for bloods. No instructions or support. Thankfully I thought I would wait until my bowel was sorted or I would have started with a chronic infection as I am on week 2 of the antibiotics. Xx
Oh gosh yes!! I paid to see one privately, turned out he was one of the heads for our rheumatology - lack of care was awful he was happy to take £200 from me though. I complained, my GP (who has now left) said it was disgusting and re referred me for a second opinion, my rheumatologist now is lovely, but overly cautious.
It’s terrible the lack of care though, and how long you actually have to wait to see somebody. Do you suffer with your eyes at all?
oh no I’m so sorry to hear! Hopefully this new med will help settle things, it’s trying to find that balance and what works isn’t it. I feel you for you though as it’s really not nice when you feel like none of the professionals are actually supporting you. I had one Gastro doctor tell me don’t go to A&E as they will not doing anything for you unless you’re dying 😫 now that in itself I thought what state has this come to here!! I hope your bowels are a little better now?
Do you know what it’s strange isn’t it, as I’ve suffered from down below.. have the ulcers and the doctors notes to prove.. I’m on a waiting list with gynae atm and it’s already been over a year! But I get very painful inside down there, check for infections no infection no antibiotics and no help. It’s ridiculous, and they still blame Covid for the wait times 🙄
I’ve got an ENT appointment this Saturday and it’s been 2 years! I’ve forgot what to mention 😫 I get nasal sores, I can’t breath through my nose properly, tinitus, hearing going funny 😂😂😂 it’s like never ending. And the headaches galore!
They say this is a rare condition but I’m wondering if actually people are just not getting diagnosed!
That’s terrible that you’ve not had any proper indication with the meds, my consultant sent me to the Gwent Tuesday morning with a long list of pre bloods… currently waiting on his secretary to phone me back as Sod’s Law I’ve got loads of ulcers that came out on Tuesday!
I think its exactly that , I was told its rare whatever I have and will refer you but given what I read and learn I dont think rare comes into it so much as just not getting diagnosed as the more diagnosed the more help and people are now just getting left and it will be more costly in the long run to them and our lives. I was at rheumatologists a while back ,mouth full of sores and ulcers and my mouth doesn't open wide, he got his apple phone with torch on to look inside mouth, said open wider I said I cant so he just put phone away and sat down as if it didnt matter then 😡
Not totally. I had to just stop the laxatives. My stomach was in constant spasm with them and I was gagging trying to eat, finding it uncomfortable to sit down and impossible to sleep. I cut down my morphine, tried to move more and as soon as I stopped the laxatives I began to at least move my bowel. It is still not anywhere near a normal motion but at least after three weeks, multiple laxatives a day Glycerine suppositories and a colonic which achieved no movement it is a significant improvement.
Yes Browncloud, I have been under gastroenterologist for around 5-6 years. She has tried every test and tried multiple medications. I had a hidden right inguinal hernia, eventually discovered Dec 2017 when I was rushed into hospital, which I truly believed was the culprit. Decided when I was told it could be a 12 month wait to have the repair at the London Hernia clinic at St Mary's, the Consultant there gave me photos and said I had likely had this all my life and gradually got worse, it was made up of omentum that had made its way through in a big way. Only a few months later things returned, my GP said no way could it be another hernia, I was absolutely convinced it must be now the left inguinal hernia and eventually I was sent to have yet another MRI, this confirmed it was a inguinal hernia but small... Surgical wanted another MRI... which came back identical. I had a long conversation with the Surgeon before the MRI about the Gastroenterologist saying bowel could be involved and said next course of action would be a particular type of dynamic MRI, Surgeon says don't worry we'll check everything on this MRI... only he didn't he just put down on his request for checking inguinal hernias, to say I was hugely disappointed is an understatement. I patiently waited for my next appointments with gastroenterology, but nothing came. I then spoke to GP and decided to get this MRI that the gastroenterologist said it would be her next test. Deciding to pay for this privately was not what I wanted to do, but I just had to get it done. The MRI the Gastroenterologist had said she would do was a Proctogram or Defecating MRI, not a very great experience but necessary. I and my rheumatologist and gastroenterologist are absolutely shocked that I have a stage 3 sigmoidocele that appears to be creating other issues. Basically, the sigmoid has dropped in an area between my vagina and rectum, yet another type of hernia. Now a different surgeon, whom I was already being sent to for a second opinion after disagreement with the first surgeon who had denied saying he would look at everything. In the same department but a hernia expert, apparently, he's been contacted about surgery.
I was with Gynaecology days before the Proctogram MRI and he told me I had nothing to be concerned about that I have hypertonic pelvic floor and need to learn how to relax the pelvic floor and then make sure I'm doing pelvic floor exercises correctly. He was not interested in my gastroenterologist's opinions or the hernia and simply sent me away with another laxative and referral to the Pelvic Dysfunction team, who will contact me for physio treatment, still waiting for this. I have since sent him a copy of the clinic report from the MRI. Only because I was advised by Gastroenterology that if surgery is required, then it may well be Gynaecology who carries this out.
So, I am back to a waiting game. Nobody has provided me with an explanation, why, what it is and how it's happened, and how to fix/manage it. It's just pathetic. My consultant Rheumatologist has said on Tuesday, she is going to try and chase the surgeon up for answers and advice...
The one thing I do know is if I had not paid for the Proctogram MRI, nobody would have been any the wiser. It is the only sure way of a diagnosis of a sigmoidocele. I am do happy I followed my gut instincts that I had not just got a small inguinal left hernia, that I had not just got hypertonic pelvic floor, my Rheumatologist said she even questioned that diagnosis of Hypertonic Pelvic Floor given where the sigmoidocele goes...
Incidentally, I feel we have spoken before and that we both suffer with Ehlers danlos too.
Oh my goodness that is horrific Gillian. I am so very sorry for all that you have been through. I truly hope that you are now well on your way to getting the surgery you need.
I don’t have ED although certain parts of my body dislocate readily, thumbs and knees. Xx
No news, sadly not got a clue what is going to happen. Surgery might be more complicated due to Ehlers Danlos and tge fact my pelvic floor support has been compromised, I believe likely from the years of me suffering and nobody ever considering this other than the Gastroenterologist saying it was her last thought of what could be happening after finding someone left behind when checking my rectum. I just wish she had been firmer with the original surgeon, I have a copy of her correspondence to him. She could have gone to Radiology herself and added this Proctogram to the MRI in November 2022 and November 2023. This last one I paid for was my 5th pelvic scan (CT & MRI)
I have just been told to make sure I do not get constipated. The Gastroenterologist checked my rectum a couple of times and said I was leaving a small amount of poop behind which over the course of the day it dried out and causes a blockage, so I am not really constipated it's like a small plug. I take Docusate every day to make sure things are soft, magnesium twice daily and if I do not go to the toilet as I would do every morning I use the glycerol suppositories which act within 30 minutes, usually 10 mins. The Gynaecologist just was happy to consider I was just totally constipated. Trying not to be too detailed, but once the rectum area has been softened everything else is okay. Triggers for constipation for me are carbohydrates such as bread, pasta, rice etc so I try to avoid.
It seems to be the same story for most of us here. So handy times have been seen by a Consultant who says I think you might have this but then discharged and as I get older things just build. I feel I have a blockage of my transverse colon as it is really hard and spasms constantly. My poop is narrowed which seems consistent. I refuse to constantly take laxatives that make me feel nauseous with awful cramps and heartburn. I haven’t tried Docasate but Senna and Bisycodol make he feel toxic abd do not work. Glycerin suppositories do not work either despite keeping them there for an hour, mainly because my poop isn’t yet in my rectum after days.
As a vegetarian I normally eat so much fibre which I am sure would make others be running to the loo. I really hope that once I am off the antibiotics, I can eat more and get my gut working again.
I feel desperately sorry for you. You are in such an awful place. Have you tried making a formal complaint to your Health Board? Xx
Docusate softens your poop, Senna is a stimulant laxative which stimulates the muscles in your bowel, this in itself can be an issue. If you can stomach eating neat extra virgin olive oil in a morning and night. Adding it to cereal, yogurt etc it might be helpful having a couple of teaspoons or even tablespoons each day.
I really really feel your suffering, I am sad you are suffering and struggling. Are you completely sure you are not having an adverse reaction to Nitrofurantoin? Known side effects for Nitrofurantoin are nausea or vomiting, abdominal pain, constipation, cardiovascular effects etc etc. You could do with a blood test.
I took Nitrofurantoin this antibiotic for 4 years for repeatedly getting unitary tract infection. I just got infections after each dose of antibiotics finished. Saw a urologist and he did scans and MRI and other than the diverticulum in my Urethra which was not symptomatic he could see nothing. He suggested a continuous low daily dose of Nitrofurantoin permanently which I did for 4 years. I then read an article by an American urologist who said to try coming off it and swapping for high strength cranberry tablet every night last thing before bed, at first I took both then got off the Nitrofurantoin and I have never had antibiotics for a UTI since, that must be 5 or more years ago. Another product I have used for UTI's is D-Mannose, this is something that can be taken daily and if things start recurring then increase the amount of supplements.
The other good supplement for helping constipation is magnesium supplement, I take this twice daily.
Please do not wait to get help with the way you feeling. Drink relatively warm water and lemon if you can, use a heat pad / hot water bottle on your tummy and back. If you can stand it use gently massage with your finger tip working from the right all the way around your colon, use olive oil or other oil. Have you tried the glycerol suppository today.
I was on Trimethoprim for a year and I still had monthly UTI`s. Now it just doesn’t touch me. I have a urethral diverticulum too. Since the vagifem and vaginal moisturisers I have had far fewer. Last year only two all year but this year since my leg got so stiff and painful all weight bearing is agony so I am sat more for long periods. Then my genital sores have been a nightmare. I had a bad flare for 8 weeks post nasal surgery. They cleared but two weeks later another crop. I am now on my 6th crop and with the huge amount of laxatives 3x Laxido plus 2 x Bisycodol I have had seepage from the bowel, hence the evolution infection in the bladder. I take triple strength cranberry daily. I tried d mannose but it did nothing for me. I use hot water bottles day and night and have hot water and lemon day and night also.
Nitrofyntoin is so toxic but the only antibiotic that works for me. I have managed to eat more today without gagging and I have drunk 4 litres of water so hopefully there will be more bowel movement tomorrow 🙏🏻 . Thank you so much for the advice and kindness. It is very much appreciated. You start to feel like a burden, a nuisance, a hypochondriac when you are always unwell. I get sick of hearing myself moan. Even my husband says take a break from talking about your health please it just gets he down. I understand that honestly but the misery of it is all consuming xx
Goodness, that really is a lot of laxatives. When you do manage to go to the toilet is it not like fluid, especially if you are not able to eat much.
When I spoke to my Gastroenterologist about the Gynaecologist wanting me to use Laxido instead of me using Docusate (which, if required, I can take 2 tablets twice daily) she said it's probably because he wants to bulk you out. I said I don't believe I need bulking out. Laxido works by increasing the "bulk" or weight of poo, which in turn stimulates your bowel.
I wonder if Laxido is not working how it is meant to with you if you are barely able to eat anything then the Laxido has nothing much to bulk out, if you know what I mean. Creating more pain and discomfort. I get more pain and discomfort when I take too much magnesium or I try to eat liquorice or liquorice capsules.
I can not allow myself to not go to the toilet daily. If I do not go then I encounter lots more pain and discomfort, my stomach swells, under my ribs. I also have a hiatus hernia which needs little encouragement to kick off issues. My pelvis and vaginal area are more painful, with lots of pressure.
Have you tried a liquid diet, or simply liquidised your normal food. My grandmother had to do this many years ago along with lots of fluids. Apologies if you have tried all these things.
It is really terrible that you are suffering this way. Please try and speak to someone. All this medication should be helping you not make you feel like you are.
I have only ever had this happen to me once before. When I was 17 I had awful colon cramps and I saw a GP who referred me to the Colorectal Team. They felt despite going daily it was not enough so gave me a week of Fibregel followed by Senna. I stopped going and was doubled up in agony. I needed five soap enemas to clear my colon for the barium enema.
The Consultant said it was IBS but that she had noted pockets in the colon. She did say when you are older, we may need to remove a few feet of it but don’t worry you have plenty there.
When my bowel just stopped working I hade myself a green soup ( kale, spinach, broccoli, celery, onions and carrots liquidised) . I had three small bowls a day for four days along with 4 litres of water a day. Nothing. My heart rate was 158 resting, my BP was 191/69 on average. I had acid reflux, awful wind, cramping and the worst nausea so by day 5 I was gagging even with a cup of tea and hardly able to drink water without it coming back up.
Yesterday was a better day for me. I ate 8 strawberries and a handful of cereals then I made a pizza dough and topped it with peppers, onions, mushrooms, oak smoked tomatoes, chilli and sweetcorn. I ate three slices. That is the most I have eaten in weeks. Today I went to the loo much better but still not normally. I am just grateful the pressure is off my rectum and pelvis a little. I don’t know what the answer is but I will never ever take Laxido or Fibregel again. Xxx
I did the same thing as you. I had been getting genital sores on and off since 1992. Repeatedly told I had herpes yet biopsies came back negative. Then I began to get awful joint pains, sporadic choking, gut pain, acid reflux. All the tests came back normal. One day I woke with blisters over my arms. I took piriton and went to work. The following day they were all over my lower legs, I was so tired and struggling to weight bear. I worked but getting out of the car at home I collapsed. My pain was in my chest, my hips, my legs. I was rushed in put on morphine and kept overnight. The next day my face was burning hot. After months and months my GP said I think you have Lupus. The tests came back positive so I paid privately to see a Rheumatologist in Nevill Hall. His advice go back to work 😧. I couldn’t stand up. He saw me two weeks later and handed me a leaflet on Lupus. I kept asking what about the nasal, oral and genital sores? What about my poor balance? Gut pain? Numb fingers? Nothing to do with Lupus he said.
I changed Rheumatologists then to Hereford. He said not Lupus but Bechets. Then they tried to tell me I had Low Grade Lymphoma so I chose to go to St Thomas`s but the Rheumatologist would not accept the diagnosis so I chose not to see a Rheumatologist for two years but then I got very sick again.
The next one said definitely Bechets and probably Lupus. The next one Fibro and hysteria. The next definitely not Fibro but UCTD. The next MCTD and my current Rheumatologist says definitely Bechets but positive Lupus anticoagulant.
Thankfully I have only once had issues with my eyes.
My bowels have only just started to work again.
Like you I am raw vaginally. I get a severe burning pain like a red hot poker. After 6 years I was diagnosed with Pudendal Neuralgia. However the local pain specialist has now disagreed with the diagnosis and prevented me from getting nerve blockers. It is so hard living like this isn’t it? Xx
South Wales really is not a great place to be for Behcets. I used to live there and fought for years to get any help. I said privately too but all they did was test after test and of course lots of money paid out, suffered since my mid teens. I moved in 2006 and got a final diagnosis in 2016 only after pressuring my GP who continually kept using the word maybe... maybe it's crohns, maybe it's lupus, maybe it's fibro. I saw a private Rheumatologist for leg and ankle pain and asked him about my genital and oral ulcers, he said nothing to do with Rheumatology... 2 weeks later I am sat in a NHS waiting room waiting to see a Rheumatologist and the door next to the lady I was seeing was the same consultant I had paid privately to see who discounted the oral and genital ulcers were anything to do with Rheumatology. I walked through the door and showed the lady Rheumatologist my pictures and charts of occurrences and history, she examined me and said you have a condition called Behcets and another condition called Ehlers Danlos, I could have hugged her.
For most of my life I had been disbelieved, prescribed countless medications, none for Behcets. Told it was stress, told I had nothing wrong with me.
Ask your Rheumatologist for a 2nd opinion, or and refer you to someone who has the expertise. There has to be someone in Wales who can can help. I really appreciate and understand your pain and frustrations.
It is a pretty dire situation here in Wales for Rheumatology. Other departments such as ENT and Respiratory are so prompt and efficient. I have had such wonderful treatment that I could not have received better in a top class private hospital.
I have gone through most of the Rheumatologists in my area and my current Consultant has been the best I have seen since I first saw one in 2009. A second opinion would not help as they come from the sane pool. Even the nurses tell me that my current Rheumatologist is so different and that he really cares. Until recently I would have agreed wholeheartedly, he has always tried to help with eyes, voice box, nasal mass, mouth ulcers and sent me to gynaecology for advice on the genital sores ( they shrugged and discharged me).
I am in a new surgery due to boundary changes so I have seen a succession of locums who have said I am a complex case beyond their pay grade, sent me on a wild goose chase to the breast clinic, been disinterested, prescribed more and more laxatives, sent me to A&E repeatedly. The system is broke sadly. I have managed to get the practice manager to agree double appointments and to be given a named GP who is wonderful . She has been off for a month so I hope to be able to see her soon and pray that she will help xx
I have just had an update on my care plan. I can share the situation on meds, Bechets colitis and whats next for you.
I haven't shots, but I have had cortizone tablets. They make me feel a whole lot better for about two weeks, but I break out in a teenage zit frenzy and then the symptoms come back with a vengeance. So I've declined cortisone. I've gone back from specialists back to my GP with the message of: we need to start looking at me as a whole and not just the piece a specialist looks at. We are going nowhere and fast this way.
So we just had a longish meeting with my GP. He did a recap of my situation. What most doctors don't realize about bechets, since it has to do with collagen and vessels the symptoms may present all over the body. And when it sets in the gastro section it might katalyze nervous system symptoms like pain hypersensitivity, fluid retension in the cells causing pain (move in the day better, lie down in the night worse in the night and morning), muscle tension and spasms and sleeping disorders.
So Plan 58 is to start combating the colitis leading to nervous system disorders, leading to muscle spasms and insomnia and leading to fluid retention, which leads to joint and abdomen pain.
Medication for fluid retention and pain now (no NSAIDS! -> fluid retention -> pain) and waiting for a consultation on medication to combat inflammation, that does not show up on CRP (Sulfasalazine or mesalamine (5-ASA), Infliximab, Adalimumab, biosimilars and semisynthetics of these for the very allergic people. And we shall have a discussion on whether to have shots or tablets: if you have colitis, when taken internally parts of the meds go bye bye because they are not digested well. With shots the whole med can be absorbed. Such as methotrexate.
I shall have an ASCA lab taken. Anti-Saccharomyces cerevisiae antibodies (ASCA) positivity can be found in up to 44% of the patients with intestinal BD, but only 3 to 4% of patients with nonintestinal BD and 9% of healthy control subjects.
• Behcet disease (BD) is a chronic, multisystem, inflammatory disease characterized by variable clinical manifestations involving systemic vasculitis of both the small and large blood vessels. The majority of BD patients present with recurrent oral ulcers in combination with other manifestations of the disease, including genital ulcers, skin lesions, arthritis, uveitis, thrombophlebitis, gastrointestinal or central nervous system involvement. Gastrointestinal BD occurs in 3 to 25% of the BD patients and shares many clinical characteristics with inflammatory bowel disease (IBD).
I feel this was a bit of a ramble between work, but I hope you get something out of it.
Thank you so much for this information. I am so sleep deprived now I will read thoroughly and make notes prior to speaking to the GP. I cannot believe the severe internal burning which I call red hot poker syndrome, the inability to control my bladder, constipation,Gut pain and cramps are just peculiar to me.
You are absolutely right we are treated in bits not the whole of us and in isolation so much is missed. I now am awaiting appointments with the Dermatologist, Urologist,Colorectal Consultant.
I sincerely hope having got so far on your journey that you get effective relief from your symptoms xx
🤞🏻🤞🏻 fingers crossed for you. That’s how I feel red hot poker - I get it down below and it can just shoot with pain, also in the rectum too. My back pain felt like that and that’s how I described it to all the consultants.
Did they look at you as if you lost the plot? I told my Rheumatologist who referred to Urogynae who said nothing wrong. I told my Urologist who shrugged. I told my GP who prescribed Valium which didn’t work. I told the pain clinic who referred to psychology. The psychologist said you are doing all you can to distract and help yourself you just need help with the pain..if only that were achievable eh? Xx
Oh yes! Everyone does when I explain any symptom.. except for my rheumatologist, and he’s the only one which can put me on aza or something similar and I don’t see why he can’t. I’m literally begging atm and after today’s appointment with ENT I’ve really just had enough. The consultant today said yes all of your problems will be solved with what you are on (no they’re not solved) except my deviated septum and he doesn’t want to touch it - he basically said no one will want to do surgery on you with the amount of meds you are on and if it is Behçet’s then there will be a risk of infection after surgery. I just totally give up now 😫 slowly losing the will……… this has been my problem no one wants to do anything. I feel broken in every single department.
I saw a counsellor over a year ago and she was even mortified with the lack of care.
I can absolutely 100% recommend Ms Farmer ENT Consultant at the Royal Gwent. She liaised with my Rheumy and vascular and did my op under local. It wasn’t pretty, I bled so much and haemorrhaged afterwards but she removed all the mass in my nostril. Kind, approachable, funny and willing to go the extra mile. I have a badly deviated septum too from smashing my face on the tarmac cracking the bridge and tearing the septum. I re broke it hitting the toilet bowl 2 years later too. God we do suffer.
I think there is a common theme currently many not willing or able to help sadly but honestly she will if you can get a referral. Xx
Thank you so much! After I’ve had my scan on my sinuses I think I may ask if I can see her instead of the guy I saw today. Because he told me to go and consult with the rheumatologist….. isn’t that his job to do? 😂 I don’t get paid to do their work. Ohh gosh that doesn’t sound good lovely) xx
I fall a lot. I have a fall cushion now so that I don’t spend hours on the floor anymore so I am grateful for that. Let me know if you do see her, honestly she is amazing xx
I use Vagifem and Silk moisturiser but it does not affect the level of pain caused by the hot poker feeling, merely helps the vaginal atrophy. I hope you have more luck xx
My Rheumatologist believes that the dragging and pain that I am getting is now the Sigmoidocele and Pelvic pain because of this and that surgical and gynaecology need to relook at me. The descent of the sigmoid into the area between my vagina and rectum is significant and neither of the consultant was ever aware it was there until now. Just palmed me off with this stuff. I had no idea about my vaginal pain being associated with this new hidden sigmoid finding. I went to my GP after I discovered that I felt like I had a lump internally, not somewhere I would normally examine but I just felt like I had to try and discover the reason fir pain. The GP diagnosed vaginal atrophy, possibly a small prolapse. Gynaecology diagnosed hypertonic pelvic floor and now this new MRI diagnosis. Rheumatologist says that I need to question if I ever needed the Vagirux too. Hope you find some answers too but more importantly help with your pain. Xxx
It really is dreadful. The Urogynae I saw could not even find my cervix. It has retracted due to a hysterectomy at 39. She was unsure what to give he for the genital sores and tried to argue that there was no correlation between the lack of bladder control and the Bechets ulcers being present. When I received the letter from her she basically lied. She said we had discussed by serious depression and anxiety issues in depth. It was not even mentioned. Thankfully I had my carer with me and she was willing to confirm what I said in my letter back to her. After weeks I got a response saying she had “misspoken” and had gained info about previous depression when she looked at my file. Sure I was seriously depressed at 39 after 8 years of fertility treatment ended with an emergency hysterectomy. It is scary how unprofessional some are.
At least it seems your Rheumatologist is on board with your diagnosis and hopefully can support you going forward but yet again you are left waiting. I really am so sorry xx
Some of these consultants are seriously out of order, I wonder how they get into the position they have. It is disgusting how you were treated, I am so pleased you challenged her and she eventually responded truthfully. I take my husband to every appointment I go to and I will urge everyone to take someone with them, it is amazing the difference, and especially when my husband starts to ask questions too, he makes sure I do not leave my appointments without me asking all my questions, when my next appointment is. I do huge amounts of research for everything I have and use this as much I can to get the most out of each of my appointments.
The Gynaecologist I saw in June tried to test me regarding Ehlers Danlos, it was like a quiz...
The immediate reaction to this newly diagnosed sigmoidocele was that it is rare and happens to women who have given birth or had a hysterectomy. I have not had children and not had a hysterectomy so I have yet to hear there reasoning. For me it appears to be affecting my bowel thankfully not my bladder, it can affect either bladder or bowel or both.
I would agree about my Rheumatologist but I fear her hands are becoming more tied. She has always been my main consultant who has referred me to everyone I have needed to see, I feel I have been fortunate in this area. But at my last appointment I fear things are changing, she made a point of telling me my 3 monthly appointments will become 6 monthly due to strains on the NHS, she asked me if I minded, I said I would accept them 6 monthly on the understanding if I needed her that I could email her like I had previously. She agreed she would respond but only for Behcets related matters.
I get annual appointments with my Rheumatologist. He always says if you need call until I did. Six times and fobbed off each time. I was going out of my mind with pain. The Secretary refused to put me through to him and would not email or leave a message for me. We don’t get email addresses given to us in Wales. The helpline nurse admitted she had repeatedly messaged him and he had not responded. When I saw him in clinic he asked how I was.I said you know how I am, I am struggling because I am nobody’s bloody problem. His face was a picture. It has made me bitter and resentful to be honest and I hate that but I trusted him and he has let me suffer for 7 months. Xx
I ask for email addresses, I know it is not normal usually to get email addresses but we don't have a normal condition. Who is it you see? I do understand your lack of trust but sadly we have little choice. You can always write to him and state something like " I am writing to inform you, as you have requested at my last appointment " then write brief description of illness and " I kindly request your guidance on how you intend to manage the treatment of this matter on my behalf as a matter of urgency" or some other words. The secretary will have no knowledge this is right or wrong and will have to deal with your correspondence. Xxx
I have been told we cannot have the email address we must go through the helpline which can taje up to two weeks to get back to you. The GP`s have the email but all but one of them refuse to use it. I had a complete meltdown and the surgery Pharmacist emailed him and in fairness he responded within the hour.
My Rheumatologist is Dr O`Berin.
As he sent me a prescription for Azapriothine and blood stickers I guess a letter is no longer necessary but I do accept your point, better than repeatedly flogging a dead horse so to speak xx
I take it he has carried out blood tests prior to you starting Azathioprine. You will required regular blood tests to keep up the prescription. Had this for 4 years unfortunately it lowered my bloods too much and created more infections, I got taken off it and put on Aprimilast/ Otzela.
Really hope it helps you with your flares and ulcers xxx
I have the stickers to get them done but until this infection clears there is no point in starting it. Thank you I hope so too. I was up most of the night with a syringe of Instillagel. The joys eh? Xxx
Sorry, I meant have you had the prescreening blood test that is carried out before Azathioprine drug therapy to make sure that you can metabolise the drug. It measures TPMT activity before starting azathioprine. This usually has to be done in the UK by all health boards.
No I haven’t had that done. I need to speak to my GP about it as I had Seratonin Syndrome from a pain med.
I think the blockage is in my transverse colon because my hernia is there and my stomach is hard and very swollen there. Also I have the typical narrowed stool if you know what I mean . Sadly A&E and the GP`s seem to concentrate on the rectum and on every examination it is completely free of blockage hence why the glycerin suppositories do not work . Xxx
My stool are narrow too, all the time, and they have never found anything to warrant my symptoms. 5 scans and still nothing, plus a colonoscopy. I spoke with my GP about the narrow stools a while ago and she was not concerned. I had often wondered if I had a hemeroid but that has not been picked up in all of the entire pelvis and pelvic floor Defecating MRI. This MRI includes many areas and has picked up the tiniest things, also involved later contrast being put in your rectum which you had to hold inside you until you are told to poop it out... sounds gross but in my opinion needed doing, it is the only way to discover this part of the colon has gone through a weakened area.
I have 2 family members who experienced blockages in the transverse colon. My brother inlaw, unfortunately he was sent away from 3 NHS hospitals, my sister got him a same day private appointment, the consultant was operating on him within 2 hour at his nearest nhs hospital, the colon had burst, he lost part of his liver, stomach and massive amounts of internal muscles, he nearly died. My stepfather was diagnosed by a locum as having a very distended stomach and complaining of horrendous pain. The locum wanted the care home to send him to hospital but they said they would wait until his own GP saw him the next day. GP arrived and never sent him to hospital. Incensed I call the GP, I live hundreds of miles away. I asked her why she had not sent him, she said because he said he was OK, I said so did you examine him... No! So I said another medical profession doctor saw fit to send him to hospital on Sunday because of these symptoms and you have just ignored his findings, not even examined him. She told me she was on her way right now back to the care home. My stepfather was in the hospital within 2 hours. MRI identified virtually an entire blocked colon, they said it was cancer, top right corner of transverse. He was treated and sent back to the care home to live another 4 years. Also yy grandmother died from a perforated bowel caused through sigmoid cancer blockage
Please do not leave this situation with no bowel movements, if they do not come through your continued use of laxatives, suppositories and gel inserts. It needs investigating properly by colonoscopy or another MRI/ CT scan.
Oh how horrendous for you and your family. I am so very sorry.
The Bladder and Bowel Nurse told me I could have a partial obstruction of the transverse colon, not a total blockage as some small amounts pass through plus I can pass wind. She has referred me urgently to the Colorectal Team. If I stop completely again I will go back to A&E but having been twice and not got taken seriously it is daunting. I am seeing her again on 10th and I seriously hope that without the dreaded laxatives things will have resolved slightly. I do need an investigation as I feel very bloated, nauseated and toxic but now that I am moving a little daily IhopeI will feel more comfortable soon xx
I am relieved to hear you have been referred urgently, each time this happens your colon is compromised, your bodily functions need to go somewhere and the pressure that we have in our lower cavity gets so pressurised. This is a serious situation, I do wish you were seeing a consultant for this. Your own GP can send you as an urgent referral, even as an emergency, I never knew this until I had to use the NHS non emergency telephone service once, eventually I had to go to a cottage hospital to see a doctor, symptoms nearly gone... turned out to be a GP, he told me if I got the same symptoms again to go to hospital straight to A & E. My own GP called me the next day and said if this happens and it's during GP hours call and we will see you here and get you transferred straight to the ward not via A & E. 2 months later that's exactly what happened.
My old neighbour's GP recently sent her to the hospital as an urgent referral for an MRI, it is a very good job he did.
Do not suffer in silence or try for days on end to get relief, these people are there to help. I know it can be horrible but you do need to do it. Keep positive and strong xxx
I hear what you say but I saw three GP`s, the Bladder and Bowel Nurse, two long waits in A&E and in the end went fir a colonic as I felt so ill and no one was listening. The colonic didn’t work no one was concerned . The only advice was to take the laxatives that were not working and were making me writhe with pain and dry retch. No one cares, not the GP`s, not A&E. I asked the last GP I saw can you have me admitted rather than me sit again for 7 hours in A&E. She said no.
I am very pleased it worked for you but it repeatedly has failed me. Even 111 would not see me, out of hours would not see me. I thought I was going to perforate. I simply do not matter to them 😞 xxx
It is so very hard for you, you have to keep on fighting as much as all these people have not been good to you. Only you can do this and you really do have to fight. Do you have the contact details for the Colorectal nurse, if yes please please contact her and tell her you are in a dire situation and you have no idea what to do and that nobody is in a position to help you and you feel like you are going to perforate. Xxx
She knows though. She was so worried about me she rang me at home the following day having spent hours going over my notes. She wrote to my GP, emailed colorectal consultant for advice and made the referral but her advice was take the Laxido and Bisicodyl again. I tried and I felt ill. I feel so much better since I stopped so she won’t be happy but frankly I don’t care whether she is or not. I went to see her for advice on my bladder, she gave me all those laxatives which have caused me so much pain, discomfort and stress. I really am on my own with this sadly . Xx
I have just been given Diazepam for help relaxing my muscles, taking at night before bed, it has definitely been helping, my sleep was around 4 hours and just exhausted. Now I am getting around 6 hours. Spoke to Rheumatologist on Tuesday as muscles are awful during the day, she's going to up the frequency so I can try in the morning if I tolerate them then she's happy for me to try 3 times a day. Cannot say I am 100% happy taking them but I needed something.
If it helps you take it us my view. Lack of sleep is just dreadful. With my leg pain, hot poker feeling and irritable bladder I am lucky to get 2-4 hours.I tried Diazapam once as I had told my GP and anyone else I saw that when I-get the red hot poker pain my heart rate increased to 158 at times and I feel agitated. It did not work for me so I stopped it. I am pleased to hear it is helping you xx
Have you tried Valerian it acts as a muscle relaxant and sleep aid. I only learnt this very recently from someone in Australia and had started to use it 2 weeks before the Diazepam, I felt it helped but had not tried it out during the daytime.
The other thing is a vaginal suppository, I spoke to the Gastroenterologist about this also and we discussed how Baclofen vaginal suppositories are meant to be very helpful. But she wanted the answers from my MRI first understandably. I have read about people using CBD oil internally on tampons to help with vaginal pain and muscle stiffness/ tension.
All I can say is I have had Bechets all my life….genetic, and only diagnosed at 38, and that was because I had such severe ulcers down below, my GP thought I had a serious illness…and asked me if my husband slept with African men!!!😳and sent me to the sexual health clinic! As you can imagine it was real fun for both of us sat in the sexual health clinic 🫢I was checked over and they had no answers! And asked if I would mind a specialist Dr who was by chance visiting that day, take a look! Hooray🎉🎉🎉🎉after all my years suffering he explained to me I had Bechets!…. Luckily for my marriage we survived 😂👍🏻… I find for me, sugar is a huge factor in ulcers and inflammation!!… I refused to take medication for years… then after my husband passed away, I just had flare up after flare up… so I gave in and I started colchicine , 2 a day… which had side affects … so now I only take them when I get a flare up!!…look after yourself everyone!!👌🏻 Welsh woman here too 🏴
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