mail dott Parsons (USA) per consiglio cura c.i.

Ragazze vi inoltro la mail che ho mandato al dott. Parsons e la sua risposta riguardo il piano terapeutico che adotterebbe per me.Vi anticipo che il mio inglese non è un granché!

Kind dr. Parsons,
I send you this e-mail because I would like to introduce to you my difficult case, and if possible to have an answer from you, unfortunately I live in Italy and I cannot be followed from you, who I know to be one of the best interstitial cystitis doctor


My name is Milena ..., I am an italian girl, and I am writing from Rome.
My situation is the following: I am 28 years old and for 6 years I am having urinary problems tied up to frequently need to urinate and nocturia, sometimes urgency (more or less 15 daily urinations).In all these years I have been visited both from urologists that gynaecologists, and I have assumed many anticholinergics (without any improvement): detrusitol, ditropan, pradif, mittoval, urotractin, vesiker, omnic, sirdalud, uraplex. I made TENS, all without results. From the gynaecological point of view I do not have problems, I have neither vestibule or vulvar problems, except hpv type 52, for which I am always periodic controls with negative pap test; negative urine culture, ever had a bacterial cystitis,no pains or burning at the urination. The first urodynamics testing in 2003 underlines a picture of hyperactive detrusor muscle in phase of filling bladder, bladder sensibility increased, and hypo contractile detrusor muscle in urination phase, with first stimulus at 100 mls, maximum ability at 340 mls. Three years ago, I approached to prof. Cervigni, I effected urodynamics testing and cystoscopy in 2005, this time the first stimulus was at 90 mls, the maximum ability was at 279 mls, cystoscopy underlined pale aspect of mucous. In these last 3 years the prof has always taken care of me with anticholinergics, on July 2007 I repeated urodynamics testing and cystoscopy, the maximum ability has gone down to 170 mls, first stimulus at 40 mls, usual picture of sensibility bladder with absence of hyperactive detrusor muscle and presence of hypo contractile detrusor muscle in urination phase. From the cystoscopy it resulted trigon with ping point hemorrhages, pale aspect and glomerulation of the base in emptying phase. The prof told me to effect a bladder biopsy in hydrodistention. On December 12 th 2007 I underwent me to the biopsy, interstitial cystitis diagnosis (number 17 mast cells), but from that day I am aliving in a nightmare. Since I woke up after anaesthesia, I heard a strong need to urinate, I had to urinate every 5 minutes with continuous need, and strong urgency and the situation up to now (after 5 months)is almost unchanged. Initially they have told me that it wanted a few weeks to return as before, after having gone out of the hospital I took antibiotics and anti-inflammatory (gentalyn and voltaren), I repeated urine culture,urodynamics testing and cystoscopy, without any change. I have begun the care for the interstitial cystitis by taking cimetidina (treatment of 3 months) to which is added Elmiron (for over 1 month) and laroxyl, I have effected a cycle of cystistat (12 instillations). I made 10 sessions of magnetotherapy without changes, I took atarax (1 month. Currently I have suspended cimetidina, atarax and Elmiron, and I have just finished a cycle of 30 sessions of hyperbaric chamber always without results. For one month I am taking Normast for mast cells (4 daily tablets) and, although there is a small improvement, my urinations are still tall (25-30 daily) in comparison to my situation before hydrodistention, For 2 months I am making pelvic floor therapies, but I have a continuous need to urinate, also having just urinated. Actually I feel, both in day and night, a sense of fullness and bladder pressure, desperately sensation to urinate but when I try, there is little any volume, I know that when the bladder becomes irritated, the first nerves that usually react and become irritated are the nerves that control frequency. Thus, when I have a flare, the very first sign is increased frequency and a need to urinate. The "false sense of fullness" is really a sign that I am in a major flare and that my bladder is severely irritated, for instance often I only urinate 20 mls, before biopsy never before 40 mls, so the hydrodistention has made my situation worse.
I would like to know why my bladder does not succeed in returning to the normalcy, and what could be happened, if hydrodistention with bladder biopsy could have created an irreparable damage. I know that in many cases it is used as a therapeutical solution,is it possible for me to be the opposite?
Will I come back as before,at this point, what therapies are eventually to adopt?

I would like to taste your "Therapeutic Solution"
(40,000 U heparin, 10 ml 2% lidocaine, 3 mL 8.4% sodium bicarbonate)because i saw results exceptionally promising, a 94% positive result for patients after just one treatment. Here in Italy we do not have sulphate heparin, but only sodic or calcic heparin (for this last there are many derivates with low molecular weight). In your opinion, which is the best?

Please answer to me

I thank you for the availability.

Kindest regards



Dear Ms...,

You have rather classic moderate to severe IC and if you do not correct the problem with the mucus lining of your bladder they you are likely to not only get better but slowly get worse as you are doing. If you were my patient you would have a 90% chance of becoming substantlally better.

The bladder is lined by mucus that protects the wall of the bladder from the poisons in urine. The mucus is bad in patients such as yourself and the poisons leak into the wall of your bladder and cause the symptoms and gradually destroy the bladder muscle as is happening with you.

Here is what you should do. Start on therapy to fix the mucus. Only heparin and Elmiron will do this. You need to add therapy to help the symptoms but you must always stay on the heparin or Elmiron. Go back on Elmiron (Fibrase in Italy). Take at least 300 mgm twice per day. That is 12 pills of Fibrase or 3 capsules of Elmiron. To help your symptoms start on these bladder instillations, heparin, either sodium, calcium or whatever it makes no difference, 40,000 units plus 10 ml of 2% lidocaine (also called lignocaine) and 5 ml of 8.4% sodium bicarbonate. Hold the medicine for only 20 or 25 minutes. If you drink a lot of fluids then you have to stop or the medicines will not work. If you make a lot of urine then the medicines will be diluted to quickly to work. one way to do this is to drink no fluids after 9:00 pm and do the instillation at 8:00am the next morning. Start with at least 3 times per week, learn to give the medication to your self at home so that you can use it everyday to get relief of your symptoms. It works much better if you use it everyday. The lidocaine should make you feel better immediately and should last several hours provided you are not drinking a lot of fluids. You can use it three times a day if you need it so that you feel better most of the time. Lastly start hydroxyzine 25 mgm at 8:00 pm.

Do not stop these treatments and do not let anyone cystoscope you anymore. It can make symptoms worse.

Stay on therapy, it could take 1 or 2 years before you feel better but you WILL improve and the lidocaine should give you good immediate relief. Do not stop the treaments or you will not get better. When you do improve, hopefully in 3 or 4 months contact me for advice on how to continue your therapy.

I wish you well and if you follow this advice you will get better.

CL Parsons

C. Lowell Parsons
Professor of Surgery/Urology
School of Medicine
University of California San Diego
ph: 619-543-5904
fax: 619-543-6573

Mily, la tua storia mi fa pensare che ci siano persone con Ci primarie, cioè che come te non hanno altri sintomi fuorchè vescicali, e Ci secondarie, cioè come me il cui primo sintomo è stata la vestibolite. Credo che in questo forum ci siano moltissime persone che hanno fibromialgia e vulvodinia, e meno con soli sintomi vescicali.
Il dott. Parson è stato davvero molto gentile e disponibile.

SI, ma una traduzione ?

Grazie

Poplife anche io concordo con te riguardo i diversi tipi di cistite, infatti avevo anche io il dubbio che la mia non lo fosse, ma non è così a quanto pare!

Shiakka in parole povere Parsons ritiene che la ci si debba curare sempre con eparina e fibrase,6 compresse al giorno, che non si devovo lasciare mai,alle quali poi si possono aggiungere rimedi per alleviare i sintomi. Mi ha consigliato il suo cocktail terapeutico, 3 volte a settimana, se ne ho necessità anche tutti i giorni, o 3 volte al giorno.Ha aggiunto di prendere atarax e di non bere molto nè prima nè dopo le instillazioni, altrimenti il farmaco non fa effetto.
Ritiene che non mi debba fare più cistoscopie altrimenti peggioro solo la situazione, ed è sicuro che migliorerò grazie alla lidocaina, che è un anestetico e dovrebbe subito portare sollievo alla vescica.Secondo lui non devo interrompere la cura, e devo ricontattarlo tra 3-4 mesi per avere un suo consiglio su come continuare la terapia.

Mily, io invece intendevo che la tua sembra una CI pura in quanto no hai altri disturbi, mentre molte di noi hanno anche problemi di vestibolite riconducibili ad una nevralgia del pudendo.
io ho capito che le compresse di fibrase sono 12 al giorno, non so da quanto sia ognuna, cmq lui dice 300 mg 2 volte al dì.

si Poplife,
le pastiglie di Fibrase da prendere al giorno sono 12.
Me le ha prescritte ieri il dott.Porru.

Poplife invece io ho sempre creduto che la c.i. pura non sia la mia, ma quella di chi ha anche bruciori o dolori,perchè sono la maggior parte.Cmq in tutti i topic voglio fare un sondaggio per sapere quante non hanno dolori o bruciori, e vestibolite o vulvodinia, credo siano veramente poche!
Riguardo il fibrase ho visto che lui me ne prescrive 12, ma sono eccessivi, io ne prenderò 6, perchè anche gli effetti collaterali non sono da sottovalutare, quando ne prendevo 6 non avevo problemi, inizierò con questa dose e poi vediamo,un pò come la cura torresani no?

Aly come va? Ti sei tolta un peso da niente...anche oggi al S Carlo ho visto altre 2 persone alle quali il neuromodulatore non funzionava, quindi la tua scelta è stata ottima. A te Porru cosa ti ha prescritto?

Grazie Milena.

serve ancora la traduzione della risposta del Doc?
Se sì, la faccio subito, fatemi sapere.
Baci,

Paloma

Ciao Paloma, io la risposta del dott l'ho capita,un pò di inglese lo so, però se per te non è un problema, e non ti costa fatica farla, magari anche le altre, che non conoscono affatto la lingua, riescono a comprendere di più.

Ciao, leggevo la questione sulla ci primaria o secondaria, volevo dire che anch' io ho solo sintomi prevalentemente vescicali e senza dolore.
Se dovesse esserci un sondaggio avvertitemi porterò la mia testimonianza.