Serositis or interstitial cystitis

[Petrof]

Hello everybody. I would really like to know if anyone was diagnosed with serositis or interstitial cystitis. What symptoms you have and how these conditions were diagnosed. I have had pain and inflammation and swelling in my lower abdomen for decades but all test were always negative (gynaecology, CT scan of the colon and just a trace of blood cells and protein in my urine). Blood results confirming lupus. Thank you very much. Petrof.

[EOLHPC]

Hello Petrof: always vvvvv glad to see you posting here again, but i wish you weren’t having to investigate these issues

Possibly you’ve noticed that my version of infant onset lupus has been putting me through 5 years of multidiscipline investigations trying to figure out why the chronic pain/inflammation/swelling had got so critical in my pelvic/abdomen/viscera. This ordeal makes me extra interested in your post...so i’ll be following this discussion closely

TRYING to be brief 🙄😉... these 5 years i have felt sure pelvic abdominal serositis is involved (from the early days my lupus meds had clearly been damping this whole complex of manifestations down, but not enough to prevent my pelvic/abdo stuff becoming so acute + persistent), and turns out serositis is part of the mix, but not as the primary issue...hopefully investigating your pelvic issues will be a less long drawn out multidiscipline process than mine, but i gather from your posts that you’ve been affected by immune dysfunction & connective tissue disorder from a very early age like me, so your issues in this abdominal region of the body may possibly be as complex as mine have turned out to be:

1. at first my medics & i thought this was urological. My long history of persistent issues down there made me qualify for urgent rigid cystoscopy etc. After a year of urology & immunology investigations my urology stuff was given this overarching diagnosis (listed in my univ hosp official records & responding well to treatment):

AID + PID + hEDS related Infectious Urinary Tract Disease (which of course involves a serosal version of active inflammatory process)

But the pelvic/abdo/viscera manifestations remained acute, so clearly this urology conclusion was only 1 part of the diagnostic jigsaw-puzzle encompassing my pelvic/abdo pain/inflammation/swelling

2 . So next was a year of urgent tertiary gyn investigatiins ...we had to see if my gyn stuff was the main cause of this abdo/viscera stuff because i am A DES Daughter (exposed daily for 5 monhs inutero in 1953 to the internationally notorious endocrine disrupting artificial oestrogen diethylstiloboesterol). The upshot is that this aspect again is serosal + due to my DES birth defects & active inflammatory process, so after years of care + annual monitoring at my small local hosps local gyn team, i was referred to higher level investigations & care under my univ hosp’s chief gyn onc surgeon

3. Then in late 2015 i was referred for tertiary investigations with gastroenterology + put in care with gastro nutrition & dietetics (because by then i’d already had a lifetime of gastro mouth to a*s investigatiins diagnosing my AID + hEDS-related upper gi + tail end secondaries, but not the small intestinal aspects). Last spring the multidiscipline gang focusing on this (rheumatology + immunology + gastroenterology inc nutrition & dietetics) finally diagnosed me with a so-called unusual inflammatory form of hyperreactive enteropathy with a degree of serosal involvement requiring a revised AID treatment plan including additional immunosuppression + oral Elemental Enteral Feeding with no food by mouth ongoing (by then things had got so severe i met the criteria). I am responding ultra well to treatment...and just SO GLAD to better understand whassup in this aspect of my chronic progressive pelvic/abdo/viscera multisystem issues & to be in ongoing joined up care of tertiary clinicians all at the same university hosiptal as my rheumatology & immunology clinics

I do wonder whether these 3 types of pelvic/abdo/viscera investigations could've been run simultaneously, but at my age (early 60s throughout this) all those procedures at once could’ve been too wearing + muddied the waters

You are v experienced so will know what in “all that above” 😏 can be of use in your case....I don’t mean to worry you, but i too was wondering the sort of things you mention in your post.....anyway, for what it’s worth to others, here is what these investigations have truly driven home to me:

- just how helpful it can be for both patients & clinicians to remain open minded & patient but determined, and ready to move towards a multidiscipline tertiary approach

- that a good working relationship with your GP can help A LOT to drive these sort of investigations forward, + also especially a good working relationship with rheumatology (and also, in my case, immunology) also actively interested

- that this LUK &this forum + other my other official support groups are an invaluable source of solidarity & info...i couldn’t have coped as well as i have without you all. ...am thankful for you all every minute of every day

- that our cases really can be ultra complex with a multistranded diagnostic mix, especially when investigating regions with as many neighbour body systems as the abdomen (eg also in my case ENT/MaxFax regions of the head gave us this sort of run around for years) where a multidiscipline approach is possibly needed

I hope something in there can be useful to you &/or others, and i apologise for such a lonnnng reply..,i feel as if i really have barged in on your post...SORRY...but, gosh, if anything in my stuff helps anyone it’ll have been so much more worth going through!

Will be vvvvvv grateful if you’ll keep us posted as your investigations move forward

🍀🍀🍀🍀🍀 Coco

PS for decades i had already been conscientiously following all first line NHS treatments + all self help lifestyle management approaches re all my pelvic/abdo/visceral issues...these helped, but only “so much” in that they couldn’t do more than treat the symptoms...while the unrecognised/untreated underlying causes (immune dysfunction & connective tissue disorders) progresseively cause debilitation/deterioration...BUT i keep up all the self help stuff ongoing, with the encourahement & approval of my current medical team

[Melba1 in reply to EOLHPC]

Sorry you’ve been through so much but that’s really helpful to share with us all Coco - thank you! I think we often learn the most from this forum 🙂 Although I sometimes feel I object to all the testing and lack of clarity between consultants, you and I are very very lucky to have found teams who care and try so hard to work with each other and with US to help (well with my notable exception of the neurologist whose pride prevented him listening or learning from his basic misunderstandings of lupus but is now receiving re-education 🤯🙄 for the benefit of his next lupus patient! )

Xx

[EOLHPC in reply to Melba1]

You’re totally welcome melba: thanks for reassuring me too - am selfconscious about my long replies...at 65 with such early onset comorbidities, inc decades of cerebral involvement, i find it really tough to zero in on THE most pertinent stuff...so i just hopefully let it all hang out 🤷🏼‍♀️

And OH MY are your words re being lucky with my current team meaningful to me ....i had to spend 40 years in the diagnostic wilderness being stonewalled, gaslighted (gaslit?) and Occam’s razored by the health system before 2010 when FINALLY a True Detective Pain Consultant insisted my GP refer me to rheumatology for investigations into immune dysfunction & connective tissue disorders. Which is why i feel so acutely the suffering all here inevitably endure - especially now the NHS is segueing into rationing & privatisation 🤦🏼‍♀️

Thanks to LUK & you lot, 2010 was when i began to learn how to spot a useless medic (and not waste time with them) + be self aware and informed enough to really help my medics help me. But it’s STILL VVVVV HARD WORK even with my current team...i have to constantly push my case forward 👮🏼‍♀️ like a flippin traffic cop...and day to day i still VVVVV MUCH need the wonderful help you all give here...cause those 40 years in the diagnostic wilderness have given me severe 😱 MPTSD which flares at the least provocation 🤦🏼‍♀️ EVERY health appt triggers it...🤷🏼‍♀️ i just try to take things 1 day @ a time...and consider myself lucky that so far no medic has ever point blank told me i’m imagining any of my health stuff (instead they just kept telling me it was ALL normal in someone with my childhood spine injury - HOWEVER that turned out to be a convenient catch-all scapegoat theory for a bunch of rather lazy GPs & consultants who just didn’t want to look further than the end of their 👃s 🤪🤣🤣🤣🤣🤣...)

Plus being born in “the old days” didn’t help me much: basically i was raised in the dark like a mushroom 🍄: too trusting & quick to be cowed by the patriarchal character of the establishment health care system..plus there was no internet & i lived deep in the country with no access to the sort of resources we have now

One discipline hard experience has taught me to ESPECIALLY be wary of is neurology...your dreadful experience TOTALLY gives me the GRRRRRRs 😡🤬...hope you’ll keep us posted on this! 😘🍀😘🍀

[Melba1]

Hello Petrof, interestingly I have the same problems and questions myself! I have had some answers over the years but the different specialists often disagree and none of the answers feel certain - life with lupus 🙄 but I’ve come to some tentative conclusions myself so here goes!

I have had phases of severe abdominal and pelvic pain since having lupus. Initially they said it can’t be the lupus and must be gynae/ ovaries especially as every time I get the severe pain I get a raised CA125 (usually a cancer marker for ovarian cancer) - I have subsequently been told it’s also a general marker of abdo inflammation and like you also had multiple investigations that found no cause (although scans were often after steroids and the pain had resolved).

Have you had other areas of serositis? (Pericarditis or pleurisy?) I used to get pericarditis before hydroxy and I found on my records I’d been diagnosed with abdominal serositis in my early days of lupus (yet not told 🙄). I think it’s very hard to diagnose as scans may show fluid/ thickening/ swelling etc but it may not be visible on these tests and other parts having had serositis suggest to me that is an area we are prone to.

Does yours come with your other lupus symptoms? Mine does (fever, rash, weight loss, ulcers, joint pain, brain issues etc) which leads me to think it’s more likely to be the lupus than not (but still need to get everything checked)

I recently had what I presumed was just cystitis but included similar higher navel pain to the serositis. So I had frequency of urination, painful bladder, strange cloudy, frothy urine but tests showed zero bacteria but a lot of blood and white cells and some protein. They gave me antibiotics but I got to the point where it was very red urine then had a bladder haemorrhage. I was also having a major neurolupus and general lupus flare so given high dose steroids which also seemed to stop the bleeding and inflammation there.

My feeling is that it’s just a part of where the lupus inflames in me BUT because the cancer marker was high and blood in urine, I’ve been sent to all sorts of specialists to get each part checked! I saw the first (urologist) on Friday, who was just about to do the cystoscopy 😬 then read my notes and said my neuro problems meant I’d need a general anaesthetic and we agreed what was the point of multiple consultants looking (poking!) at all their separate parts when it was all probably lupus inflaming all the parts and a CT scan of everything may be better. He agreed at my age and with the sudden onset of blood and pain, with steroids helping, with it coming with other lupus symptoms, it was highly unlikely to be cancer and probably lupus, maybe a mixture of bladder inflammation and serositis. He did say serositis itself wouldn’t effect the bladder as it’s not got the serous layer the heart, lungs and abdomen have.

I’m not sure I’ve been very helpful as still not entirely sure myself. My way of determining whether it’s most likely the lupus is usually to decrease steroids to chart any increase in symptoms but that is very much disagreed with by my rheumy and not recommended as lowering the steroids can cause permanent damage (and did make me quite ill so I won’t experiment again!)

Hope you get some answers and some relief from the pain. Keep us informed if you find out more and I’ll add to this after I get gynaes opinion on Monday. Here are the current votes from my health professionals:

1. Young GP - cystitis

2. Male GP - haemorrhagic cystitis from the lupus

3. Rheumy - Neurolupus flare, possibly serositis but bladder unrelated to lupus and require full checks.

4. Gynae- Dermatologist (I have an autoimmune skin disease down there) Skin disease has reflared, whole area inflamed, suspects generalised autoimmune attack of that whole genital/ pelvic/ abdo area

5. My favourite GP - your lupus does weird things to you, think it’s most likely the lupus and don’t let anyone stick a camera up your urethra unless they can prove a need!

6. Urologist - either infection with no bacteria or bladder / abdo inflammation from the lupus

Fascinated to get the next vote!! 😂

X

[EOLHPC in reply to Melba1]

Great reply melba 🌟🌟🌟🌟🌟 👏👏👏👏👏

And YES, me too:

- i do have documented medical history of serosal inflammation (pleurisy, gynaecological (probably mainly re the endocrine disrupting DES exposure) etc)

- my current medics do acknowledge that my lupus always flares alongside ALL my multisystem pelvic/abdo visceral etc issues as well as everyflippinotherthing i’ve got going on eg the chronic IgG,A,M deficiency-related high infection suseptibility - which is why all of these + my lupus need immunosuppression meds both as part as my daily therapeutic combined therapy treatment plan AND @ increased doses during any type of flares (uro, gyn , gastro)

Cannot WAIT for more news from you as this thing evolves 🤞🤞🤞🤞🤞🤞❤️

[Petrof in reply to Melba1]

Hi Melba1. That is interesting. I also had raised ovarian cancer markers and was sent to have an urgent appointment with a gynaecologist and a scan. At the end was told all is perfectly healthy and discharged. That was the end of it. I am wondering if I should ask for an urologist opinion. I usually also have swollen abdomen and face with this.

I feel that over the years the many flare ups caused some damage but I can’t work out where because all seems healthy. My pain flares with any viral infection. Also strangely, the pain is also triggered by hard food like nuts or seeds. The same place but it does not feel like inflammation pain. Just like the bowel movement triggering pain on some old lesion. Sometimes I also wonder if it could be adhesions or old lesions caused by endometriosis. ..

[EOLHPC in reply to Petrof]

Endometriosis is part of my mix too...i wondered whether adhesiins related to this could be part of thr mix...especially because the ultra worst hyperreactive anaphylaxis-like pain incidents i was having during these 5 nightmare years of investigations were triggered at a certain phase of sex intimacy...and i’d NEVER had anything like this in my decades of pain-free penetration....yes, i’d had vulvar pain due to lichen sclerosus (which responds well to treatments), but not this sort of internal pain - starting up 5 years ago seemingly out of the blue, causing autonomic dysfuntion to flare alongside explosive evacuations at both ends and leaving me curled up in fetal position for several hours telling my shocked husband: i’m FINE, don’t worry!

well, ok, except there was the persistent pain of the internal inflammation & aching caused by gynaecology managing to frightfully injure me internally due to getting colposcopy equipment stuck in the most dreadful way...that persisted for months before totally clearing up

Basically we now know this frightful internal multisystem pain starting up 5 years ago is a multisystem issue, caused mainly by my small intestines having become severely inflamed due to the AID enteropathy, which, at a certain phase of penetration, simply made my small intestines freak out in reaction to the pressure....apologies if TMI, but illustrates how complex & overlapping these pelvic/abdo issues really can be...

[EOLHPC in reply to Petrof]

PS your type of reactions to nuts and seeds turned out to be part of my AID-related enteropathy:

I had been managing my chronic GI stuff via a high fibre Low FODMAP diet for many many years...as the enteropathy progessed i had become gradually hyper-reactive to fibre...especially nuts, seeds, fruit, veg...gastro investigations determined I had to totally exclude all residue forming foods...the EEN + excluding fermentable reside forming food stuffs is now keeping my nutrition ok while saving me from enteropathy-related bowel obstructions...

the set of pain manifestations involved in all this stuff i’ve been going through for 5 years has always felt in part like your description: not like inflammation pain, more like BMs triggering adhesions/lesions pain...but i had developed an increasingly distended abdomen which during these 5 years of investigations became more & more sensitive to pressure of any kind (so i couldn’t even hug)...

this ALL deflated & stopped hurting so much as soon as i fulfilled the gastro criteria and was put on EEN....but every gastro food challenge & investigative procedure triggered all that again & again until these ceased last autumn..turns out this aspect was due to AID-related enteropathy maladsorption + inflammatory process...

[Melba1]

Did you have all the scans too Lou? Anything showed up? I’m wondering whether to have the CT or not as it’s maybe extra radiation unnecessarily when I don’t think anything will show.

X

[Cas70]

Dear Petrof

I can only suggest you try D-Manose - it is the kernel of the Cranberry and is fantastic at getting rid of infections in the bladder. You can buy or order it at most health shops. My Doctor was delighted at the results it gave me and my husband. It has not impeded any other meds with the 4 other people I know who use it. Look it up on the net. Best wishes

[Petrof]

Thank you all for your responses.