View Full Version : My little girl needs a UK paed urologist...preferably IS friendly
:help: Having had a consultation with my children's endo this morning, it appears that my daughter (7) needs to see a paediatric urologist fairly urgently. Since birth she has had persistent nocturia (bedwetting). Psychological causes have been ruled out. She also had mild vaginal adhesions as a baby and toddler which seem to have sorted themselves out without any intervention. However, she does have continual vulvitis and urine infection problems. Recently, during a pelvic ultrasound scan her bladder would not completely void her urine - 3 times! There appears to be some reason for this, namely something obstructing the exit route in her urethral area. As she also has a fairly large(ish) clitoral hood which extends from the top of her labia to the vaginal entrance and includes a (penile?) hood/gland (her clitoris basically looks like a penis that is immobilised/fixed between the labia), I am concerned that any potential surgery is carried out by an IS friendly doctor and not someone who might believe that a largish clitoris ought to be reduced. When I have asked the question of whether she has an enlarged clitoris of her endo in the past, he has always said that she is 'within range' and has refused to discuss the idea that my daughter has slightly atypical genitalia. I am very concerned that during any kind of surgical procedure, her clitoris and erotic sensation might be irreversibly damaged. If anyone here at BLO has some friendly advice I would be most grateful to hear it. Thanks.
Fee
Well, I can tell you to avoid at all costs Great Ormond St. The reason for this is based upon comments by doctors there calling us things like "green-wellied loonies" "Us" is intersex advocates, btw. Another doctor there (98%sure he is from there) said the birth of a newborn with intersex is as bad if not worse than having a stillborn baby.
I would contact Sara Creighton and see if she can recommend someone. Just remember that every problem to a surgeon is one that requires a scalpal to fix.
Betsy
Hi Betsy,
So, what do I do when my little girl continues to bedwet, has some trouble holding onto her urine during the day, cannot void her bladder properly, has frequent (urinary?) infections with temperatures, and now the ultrasound scan seems to show (something?) is blocking her urethral exit??? If we leave things as they are until she is old enough to be involved in decisions we risk the problem worsening and her having more infections, while on the other hand if she has the cystoscopy and surgery is suggested we run the risk of exactly what I am so against happening...namely genital surgery without her consent... :cry_smile
Fee
Cosmetic surgery is one thing, surgery to fix the causes of infections is another Fee. It's like comparing apples and oranges.
Best to get the cause of the recurring infections under control.
Well, I know that...just concerned that she might get damaged during whatever procedures are performed in the genital region. And it's not quite like comparing apples and oranges in my book...if as a result of genital surgery to 'fix' a urology problem her clitoris is damaged/scarred in the process, is it..? Given what I have experienced at the hands of surgeons, in addition to just being worried that there might be something wrong with my little girl that requires surgery and investigations such as a VCUG which involves the insertion of a catheter into the urethra of a 7 year old girl is enough to make any mother anxious. Incidentally, the endo my children see at GOSH is fairly IS friendly...apparently he just wants a urologist's opinion at the moment. I wish there were lists of medical specialists somewhere that stated how many and what type of surgeries they had performed, which could give an evaluation of the outcomes from both the surgeons' and the patients' perspectives, so that patients/parents had more informed choice about who they see. I am expected to just accept whoever the endo recommends without speaking to the surgeon or knowing anything further about them.
what type of surgeries they had performed, which could give an evaluation of the outcomes from both the surgeons' and the patients' perspectives, so that patients/parents had more informed choice about who they see.
I don't know what the health care system is like in the UK, but you can ask the doctor about that. Too often, we see doctors like they are assigned to us instead of seeing their services from a consumer point of view and shopping around for the one that may be a best fit. One note on this however - sometimes the doctors that have horrible bedside manners are really good while those that have good manners are often horrible doctors--particularly surgeons.
It sounds like an ordinary urinary tract infection. A prescription for an antibiotic is what you need, NOT surgery, by the sound of it. If necessary, you should get your GP (whom I presume is IS-friendly) to diagnose the bacterial species causing the infection by taking a swab, and then having this "cultivated" in a petri dish in a medical laboratory; this would take a few days. Once the bacterial species present is known, an appropriate specific antibiotic can then be prescribed.
John.
Quite often she's been prescribed antibiotics which clear up any underlying infection, but it is not this which is so much of a concern - all little girls get these infections from time to time due mainly to hygiene reasons. It is her bladder function which is giving cause for concern, as well as the urine concentration. Her skin in the vulval region is constantly red and sore, made worse by the fact she still needs to wear 'dry-nites' at night. Ultrasound scans have shown that her bladder is not voiding her urine properly...leaving her very leaky not only at night but during the day, too. She has been examined by an expert IS friendly gynae (who has clarified that my daughter's external genitalia is within range and entirely normal in appearance) and has a referral to a paed urologist at Great Ormond Street Hospital. Apparently there are a number of non-invasive investigations that can be done in urology which won't result in any psychological trauma. The VCUG procedure I referred to earlier, if it is deemed necessary, will be done under a GA. I have yet to meet the urologist, but believe me, I WILL NOT be putting my little girl through any unnecessary investigations unless all the evidence supports such a course of action. At the moment however, all her doctors, the endo, gynae and GP, feel that investigations are necessary. As her parent I am doing my best to remain open-minded as I do not feel it is good for her long-term health to be constantly uncomfortable and sore due to this strong, leaky urine; on the other hand I am very much aware of the need to be cautious with any investagative treatment. Her endo (the doctor co-ordinating everything) is an IS-friendly consultant and agrees with me that caution should govern any decisions we make.
androjeanne
06-06-05, 12:23 AM
Hi Fee,
I was born with AIS and my adopted son is xy/xo nosaic. He had his surgery at knoxville Childrens Hospital. His Dr. is Preston Smith. He was fantastic and did a wonderful job. He fixed a hernia, brought down two testies and circumcised him. He place the extra circ skin on the back of his penis to be used later for a possible hypospadias repair. I am not making that decision for him he can make that decision on his own. Anyway, he is a great doc that is very sensitive to our issues.
Good Luck.
Jeanne
androjeanne
06-06-05, 12:25 AM
Sorry fee,
I see you are in the UK. This does very little good fopr you.
Jeanne
Hi Jeanne,
Thanks for this and trying to help. I could, if I needed to, travel to the States for help. So far, the UK has shown itself to be less than forthcoming with any help - it's now 2.5 years since my daughter first saw the endo.
Take care,
Fee
I am also a patient of Miss Crieghton
Where do you live in the UK as I think Great Ormond street is a good place to start if you can get a refferal from your GP.
Dear Fee,
I tried to write you earlier but it some problems ith my activisation.
Yes it is very difficult to have a child with genital
anomaly I know it better than any one in the world
because my mother couldn't do anything when I was born.
And I am very glad
that you are again surgical intervention.
I think your child was born like me.I am 30 and wasn't in surgical
intervention because it was and is taboo in Central Asia.
Please don't call your child a girl.
If you want to ask me anything I would be very glad.
You see my Eglish isn't so good but I 'll try to answer.
Sun(my name in translation into persian)
Hi Sun,
Thanks for the post. But my little girl IS definitely a girl...she is a nurturer and carer, wants to have babies (still plays with her dollies), loves jewellery, makeup, clothes, and refuses to have anything but LONG hair; but she is also a tomboy enjoying most sports, as well as climbing trees, walls or anything else for that matter. She often falls, hurts herself and then gets on with doing whatever she was doing all over again, oblivious to any pain. Her genitalia is not that abnormal...and her clitoris is within the normal range according to an expert IS doctor. Her main trouble is the urination problem, but we are seeing specialists for this at Great Ormond Street Hospital.
Thank you very much for your concern.
Take care and do keep writing to me if this helps you.
Fee
vBulletin, Copyright ©2000-2008, Jelsoft Enterprises Ltd.