Hi, I'm a 57 year old woman who developed severe symptoms of interstial cystitis, a benign condition, in my late thirties but despite haematuria it took 6 years to get a cystoscopy and immediate diagnosis of end stage IC with a severely inflamed, scarred and shruken bladder. It was too late other than to have surgery, a complex type of urostomy to bypass my bladder. I also developed major bowel and temperature control issues at that time and awful pain which wasn't treated so has become chronic. I had further surgery last August to remove my bladder, internal urinary reservoir, and to detach the adhesions what had been causing problems and to give me a new urostomy. I became very unwell and required further hospital admissions which to be honest were so bad I'm refusing ever to go back in. Just prior to this I received an early stage invasive ductal cancer diagnosis which apart from the inconvenience of it all I couldn't have cared less about it as by the time I was due to have radiotherapy I was so unwell with the so called benign stuff it seemed completely insignificant. The unwell feeling has continued. I'm absolutely exhausted, feel sick constantly, lost too much weight which I'm really struggling to gain, feel really weak and chronic pain has started to affect other areas. I've been a really bad sleeper forever but even with the exhaustion I'm completely incapable of sleep now. That's along with new balance issues and falls. For some reason I've become so intolerant of the cold that I'm now reluctant to go out alone as I become drowsy and disorientated and acutely unwell. My daughters are concerned it's a cardiac issue because I look badly cyanosed. Some of this was initially blamed on anaemia which it turns out I'm not. This doesn't need to be outside, it happens just as often at home if I'm feeling cold or if I'm changing clothes. I stopped the Letrozole prescribed to lessen the risk of return of breast cancer because it retriggered hot flushes which alternate with the freezing spells so if I even bother going to bed at night my bed ends up soaking, then me freezing again. This goes on a lot during the day but dozens of times overnight. I strongly suspect I have sjogrens syndrome. I'm at increased risk of due to IC but because it only really seemed to cause me oral and eye problems over the years I basically ignored it. A year past in November my pain became much much worse and I seem to have developed many more sjogrens symptoms since then although also realised other common ones I'd also had for ages. I saw my dentist recently and she noted the dry mouth, sores on my tongue and oblivious to me the bleeding cracks at the side of my mouth so has referred me onto the dental hospital but that's likely to take forever so I've decided to go private rather than via the NHS. My husband has been supportive to some extent, mainly when I become unwell because I'm too cold but thinks because I'm doing the housework I'm getting better rather than it's because he doesn't do it so I don't have much option. I've spent most of this week trying to lie comfortably on top of my bed because I'm feeling so unwell and as if I'm getting worse. The more recent symptoms I've been having are concerning me that I may have non hodkins lymphoma. I haven't mentioned this to anyone and am trying to tell myself I'm being overly anxious but struggling to find another explanation for why I seem to be deteriorating so much rather than getting any better. Has anyone in the group developed Sjogrens following an IC or other autoimmune disorder and then go on to develop non hodkins lymphoma or anything similar? With thanks, Morvern
Hi Morvern and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.
I am Mike and I help out around our various Lymphoma groups.
I am so sorry to read your story, you have had a hard journey to navigate over the years.
Obviously the only people who can help pinpoint if you have Sjogren's Syndrome or any the 60 types of Lymphoma are your medical professionals.
The common Symptoms of lymphoma can often be the same as those for many other health conditions including autoimmune disorders.
Having Sjogren's Syndrome is indeed listed in the Causes and risk factors for lymphoma and having this condition would make someone 5 time more susceptible to developing Lymphoma than someone who has not the condition..... but it is still rare for this to happen.
Over the years I have been helping out on the Community I think I remember one person report this but I have no idea who or when that was.
You need to keep working with your health professionals to find out what is going on....... but the Diagnosis of Lymphoma is rather straightforward in that it requires a biopsy of any areas of concern.
Always around to help more or just to chat
Hi again I am sure that uploading your journey on this post has in some way got it ‘out there’….. I find it helps.
Honestly there is nothing much I can suggest or add as although my incurable cancer journey is soon to go into its 24th year the care and attention I have received from the multiple departments I have dealt with over these many years has been short of amazing (see my story using the link below)
I will say that I have always found talking face to face with others helps a lot so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Wishing you all the very best and I am always around to listen but may not have answers ((hugs))
