Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Eddie on August 05, 2012, 10:57:15 PM
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Just though i would ask if anyone has info advice on this.
My youngest daughter has frequent urine infections, at least we think so, she was tested a few times within the last year and it was positive but not tested every time, we just got her cranberry and barley juice.
Six months ago she ended up in hospital with suspected appendicitis and when they opened they found blood has escaped into the abdomen from the Fallopian tubes, and a few small cysts which they removed and washed away the blood.
For the last fortnight she has been really poorly again, and again it started when she was on a period. She was given antibiotics last Tuesday which have done nothing for her pain, we spent Friday night in A&E with her, and they checked the urine and said no infection but changed the antibiotics.
The first sample was sent off on Wednesday and hopefully will be back tomorrow, if no infection shows on that what else could it be?
I have never heard of blood being in the wrong place, so how common is it?
Eddie. x
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She needs a CT scan of the abdomen including pelvis. There are reasons and she needs to be checked thoroughly. Hope you can get a good doctor to guide this. A urogynocologist would be first choice, but don't know UK equivalent.
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Its Urologist Trey UK and Ozz xxxx
Id be doing exactly the same CT scan see whats up
Love Suzi Q xxxxxxxxxxxxxxxx
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Absolutely and most definitely she must be referred to a uroligist. They will scan the kidneys, look at the bladder and probably carry out an xray where they track the progress of urine.
Any constant recurrence of UTI's needs investigation
I also had this as a child but as a young child. It was a reflux where the tubes that take the urine from the kidney to the bladder were faulty
I had an op to fix it and have been fine ever since save for the odd episode
I am unsure as to why your GP has not referred her already but if I were you I would insist on it
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Could it be endometriosis? This can cause bleeding in unexpected places during a period.
Taz x
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Also what I tend to do is rather than wait for an NHS appt which as we all know can take forever, I see a consultant privately for an initial appt then get transferred on to the NHS for treatment
Playing the system yes but worth it if you dont want to wait
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She has been referred last week, and Taz the GP did mention endometriosis in passing, i had it in my 20's but her symptoms seem very different. Also i was a bit dissapointed i thought it would be gynacology if it was being taken seriously. Numpty. Hopefully we will get some answers today. Will think on the private route too.
Eddie.x
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Son's girlfriend has had similar problems since her teens. She often ends up visiting local NHS24 in the wee small hours in agony. Turns out her problem is a very narrow urethra. They do not want to operate yet as they reckon it will improve by itself, but try telling her that at 2 in the morning. So every 2/3 months she gets antibiotics to clear up infection.
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This is from a private clinics webpage and mentions bleeding into the abdomen
Endometriosis is not a disease as such and nobody knows exactly how it starts. Some doctors believe the tissue that is shed from the lining of the womb during a period somehow finds its way through the fallopian tubes to the outside of the womb, from where it spreads to the tissues that are affected. The hormones that are produced by the ovaries during the menstrual cycle stimulate these tissues just as they do the lining of the womb, making them bleed. This bleeding into the inside of the abdomen and pelvis is responsible for the pain of the condition as well as formation of adhesions that can lead to infertility (difficulty with conceiving).
Taz x
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Thanks Taz. Things were never explained well 25+ years back i suppose. Eddie. X
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Endometriosis sprang to mind. Do let us know, 16 is too early to begin with 'womens problems' >:(
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For the recurring bladder infections, Google 'Waterfall d-mannose' - expensive, but really, genuinely DOES work (I had got the the stage with infections that my GP let me keep 3 days' of anti-bs 'in stock' so I could start them at the first twinge, even if it was the weekend - got this fab stuff about 8 years ago and haven't touched anti-bs since, and no - I'm not on commission).
I hope your daughter gets sorted Eddie - poor kid must be so fed up ans scared :(
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Scary for her and you Eddie.
Its no fun having pain at any age but at 16 she should not have to be worrying about this kind of thing. I hope you get it sorted out for her very quickly.
:hug:
Honeyb
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D mannose is a large sugar molecule that attracts e coli, but my understanding is that the molecule goes into the bladder, rather than the bloodstream and does its work by attracting the e coli off the bladder wall. Cranberry is thought to slicken the bladder wall to make it more difficult for the e coli to adhere to the wall, thus I use cranactin with d mannose by Soleray. I also buy AZO test strips for urine infection from Amazon. With these strips I know when to call my doctor. So often VA masks as a UTI and I'd hate to take unnecessary ABs. This comment not for your daughter, but for us older ladies.
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Hi Eddie
My daughter suffered recurrent infections with occasional blood. She was given regular ABs against my preference. She drank cranberry juice also.
However, eventually she had her urethra stretched a bit. We also visited a vibrational healer (ex rheumatology consultant) who said she had ecoli in her bowel which is extremely difficult for ABs to treat. an She treated her with flower remedies. My daughter has not had an infection since (4 years).
I read in recent years that UTIs have becomes resistent to most ABs - although there are 2 main ABs that do seem to get rid of it.
I do hope your daughter gets things clarified soon eddie and I do agree that if you can afford it, initial private treatment can be a faster, more direct option with more focussed treatment (sad to say). Some consultants will continue with the treatment within NHS so it is a good idea to check they do both.
Hope it is resolved soon.
Rx
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Also what I tend to do is rather than wait for an NHS appt which as we all know can take forever, I see a consultant privately for an initial appt then get transferred on to the NHS for treatment
Playing the system yes but worth it if you dont want to wait
Yes,we did this a couple of weeks ago with my husband's Rheumatology appt.He was in agony and we were worried,but his NHS appt.wasn't until mid September.I phoned his GP and said we wanted to go private and picked up a referral letter later that day and saw the Consultant 24 hours later at the Nuffield.
After his initial examination and some discussion,he said that he wanted to order lots of blood tests and xrays which would cost quite a bit paying privately (we don't have mediacl insurance so were 'paying as you go' so to speak),and so he said that we could continue seeing him on the NHS. . . .'In fact,you can come to my clinic at the city hospital in the morning,I'll see you at 8.30am,before I start my clinic' This we did and we had another 8.30am appt. a week later,at his NHS clinic,and we've got a 9am one next week too.All for a very modest initial financial outlay.
I'm so glad we went down that route and I hope your daughter gets seen very soon and that you get a diagnosis and treatment rapidly.You must be very worried,but I'm sure she'll be fine soon,once they find out what's causing it.
Take care,love Jilly xx
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Got results today. No infection, but blood present, hand in another sample. Make appt for G.P. If still in pain go to A&E. So i am impressed by the private fastlane. Even now she has been referred i can get private appt with ?? Bupa? Don't know who else?
Eddie. X
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Yes you can still get a private appt. Ask your GP if there is a uroligist that they can recommend or ring your local private hospitals and get a list of their urologists, pick one make an appt and your GP will give you a referral letter to take with you. Once this is done you simply cancel your NHS appt.
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I am with Westfield Health if thats any use Eddie its cheaper than BUPA and very good look it up on line thats how i got my Gastro appointment so quick paying privately for initial consultation jumping the queue i know but got fed up waiting.
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Hi Leony
I am also with Westfield Health. We provide this for all employees. It is a great Hybrid plan and less expensive than paying for full private. We added Surgery Choices in recent years and our staff have used it on 3 occasions that I am aware of.
Not the same as private with BUPA, Prudential, Norwich Union etc. but has different benefits.
Someone currently using it to see a specific consultant who has retired from NHS (treated her before). Consultation cost refunded, scans sorted if required and surgery paid for.
I had not thought of that when discussing on this subject.
Fx
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I am looking at this just now, i wonder if the company i work for gives a discount on healthcare? I've never thought of that, must check if there is a qualifying period? Thanks ladies. Eddie. x
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Hi Eddie
Because all our employees are automatically enrolled, there is no waiting list. New people have to wait 3 months I think with Westfield. The cashback side has no qualifying conditions. The Surgery Choices option (if you can get that) I think may have some qualifying conditions as most medical companies have.
I hope you can get something Eddie.
Fx
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Typical, Apparently our company doesn't offer it anymore, the least expensive one i can find is £40 per month. :(
Eddie. x
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Would it cost too much to get the initial appointment privately? My neighbour did this and then got up the waiting list much quicker.
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HI Eddie
I am not advocating Westfield Health specifically, however, it may be worth looking at the benefits on that. Not sure I am allowed to post a link here, so Go to Westfield Health. Check ot Good4You Health Cash Plan. Open the Benefits Table PDF on the right and check out what you would need for the monthly payment.
These types of plans allow you to have complementary therapies too, so it is a pro-active way of keeping on top of your health.
There are five levels of payment and benefits. It may not suit you, but could be worth checking that out. Or google Health Cash Plans. Another one that gets a good name is Healthshield.
Fx
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Paying for a private consultation won't always lead you back into the NHS but is worth while paying to get peace of mind. Ring round the private hospitals for a pay scale then you can make the decision.
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Forgot to mention Eddie. Please make it clear you are paying this yourself and not via a Health Insurance Company. That can often make a difference to the charge. I know it has in the past for some people.
Fx
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I must say i stayed with Westfield when i retired kept it up on a personal basis and they have been brilliant prmpt payment never quibble and helpline really good at answering any queries i pay 16.60 per month on level 3 very satisfied.
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I found that website £16.60 per month looks good, and no waiting time. So do i still get a referral from g.p.?
Eddie. x
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No Consultant should see a new patient without a GP referral. Ethics and safety ;) - I would steer clear of any Doctor who took me on board without a letter from the GP.
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Thanks, think i'm getting things in order. Eddie. x
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That's good. Feeling in control can make a huge amount of difference!
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Eddie have to have a referral letter from GP to see them as they will not refund the consultation fee without the name of the GP that referred you and you have to send in the consultation fee receipt along with the claim form. Hope that helps seen mine in less than 2 weeks, good luck.
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I am due at dentist tomorrow, so i could delay that a bit and get some help with that. Would i need to be due dental check-up first?
I know this is a bit off topic, but it could actually be quite handy.
So, i start with G.P., we see her on Monday or Wednesday.
Then pick a practice, see doc, see urologist, then transfer to NHS?
Eddie. x
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This may be a silly question but I will ask it anyway.
A few years ago when I was having trouble with a small hernia I considered taking out private health care and using it to get the operation.
After a bit of phoning around I was told that it was much the same as pet insurance ::) and they would take me on but my pre existing condition (the hernia) would not be covered.
Does this apply to all medical insurance companies or are some different.
Honeyb
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HoneyB. This is what i'm thinking too. It would be really good if we could do this.
Eddie. x
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I think you may have to pay for this one Eddie and then be transferred. Have you thought of calling Ross Hall. I know that a lot of their consultants do both private and NHS.
I am pretty sure no pre existing conditions are covered by a new health policy.
I hope I am wrong and would be happy to be shot down in flames here.
Honeyb
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We used to be with BUPA many years ago and they wouldn't cover my pre-existing incisional hernia.
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Hi Eddie
In my own experience, pre-existing conditions are not covered by traditional private health cover such as BUPA, Prudential etc.
Westfield Health and other cashback plans operate differently and don't have that restriction. However they are not the same type of cover.
As I understand your position:
Private Health if you take it out now would not cover any treatment privately
A cash health plan would allow consultation fees and some other tests to be refunded. There is generally a 3 month waiting list. You pay and then claim back a percentage or whole amount depending on the cover you have. I would research a few online and then decide.
So your choices are:
Take out cash plan and wait the required time (3 months).
Go via traditional NHS
Pay for private consultation and then revert to NHS.
If you go for option 3, do some research first about best urologist and hospital. Phone to check fees for paying yourself and check the consultant works in NHS and where he practices, so you could continue there.
Then go to your GP, discuss referral to urologist. If you are not happy with the NHS or GP options, say you would like to pay privately because you are so concerned about the situation.
Ask the GP to write a letter to the Consultant (you already have the name and hospital).
Then you make appointment with consultant and you will have the letter organised.
Be aware that the consultant may wish to carry out scans/tests which will cost privately. He/she may not be able to give full opinion without them, so be clear on the costs with him and what you can pay yourself. Very often, if they realise you are frustrated enough to pay privately, they will do what they can to help on NHS.
Also remember, that scans etc are charged by those departments and not him/her so be sure to clarify what you may have to decide.
Long answer eddie, but I hope it helps.
Fx
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Ah, thanks for making it clear.
Just spent another evening in A&E, poor soul can't get any rest from it. Doc there said go back to gp and ask for ultrasound, why on earth she couldn't organise it i don't know. Absolutely useless, so, Westfield health have waived there waiting time.
Docs tomorrow and go from there.
Eddie.x
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Just googled 'private gp's' in my postcode, and our own health centre came up? I already have an appt for 5.30 there today, so i should ask who is doing private consultations. I thought a private g.p. wouldn't work within an nhs practice, i know they all use the same hospitals.
Eddie.x
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Ah, thanks for making it clear.
Just spent another evening in A&E, poor soul can't get any rest from it. Doc there said go back to gp and ask for ultrasound, why on earth she couldn't organise it i don't know. Absolutely useless, so, Westfield health have waived there waiting time.
Docs tomorrow and go from there.
Eddie.x
Hi eddie. Just read your post. Are you saying you have spoken with Westfield Health and they have waived the three months waiting time before you can make the claim? If so, and if the plan suits you, then that's fab.
I can understand a waiting time in a cashplan situation but fab if they have waived it.
I use mine for specs, dental, complementary therapies which help with menopause. I have had no need for consultants yet. There is also a GP / specialist line through which you can get a second opinion.
There are other cashback plans which work well too.
Fx
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Hi Firewalker, It's this months offer, but i also read the small print and if anyone has seen a gp, visited hospital or taking any prescribed medicines it must be disclosed, prob class as pre-existing.
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They are very helpful. I would suggest you phone and claridfy this position. At least you will be aware one way or another.
Fx
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That's what i've just done, they class it as pre-existing, so back to two options, i'll ask the gp i see today who does private consultation in surgery and go from there.
Eddie. x (feeling like i've let her down.)
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How can you have let her down Eddie? You have tried alternatives but they do not seem to fit at this point.
I hope your GP is helpful to you. Perhaps the fact you are trying to get private organised may be enough for her/him to realise you are serious.
Fx
I feel a bit confused, but I have to say this Eddie. My consultation allowance with Westfield does not have any relationship with any condition. In other words, I can use it for anything and pre-existing conditions do not matter. Unless they have changed their policy or unless ours is different because it is a Corporate policy. That's a pity if they have applied that restriction.
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When i called up, i was asked if i was enquiring via a employment policy or personal?
We have been back to see our own g.p. she has referred her for a full abdominal ultrasound. She reckons 2-3 weeks. The urine test wes clear again.
She thinks if it was endometriosis the pain would have gone by now, that's over two weeks.
She got buscopan and losec to see if it is her bowel. Trial and error i suppose until we get answers.
Eddie. x
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I think from what I have read that Westfield will cover pre existing dental problems but that is it.
I suppose I can understand this because in theory you could take out a policy short term.....get the treatment and then cancel. They dont make any money that way.
Dont know whether you picked up my suggestion Eddie, but have you phoned Ross Hall. They are bery helpful as we have paid for quite a few things there ourselves. My son had week blood vessels in his nose and really suffers from terrible nose bleeds. Every so often we have to have it cauterized and as the NHS makes such a mess of it we always go private and pay just to get it done properly. Ross Hall is the one we use.
When you spend the night in A & E can you not insist she is admitted. Seems a bit much that they keep sending her home. Poor little soul she must be really scared.
Honeyb
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HoneyB, Do i just call them up and enquire?
Eddie. x
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Yep thats exactly what you do.
The reception desk will direct you to the correct department and then you talk to the secretary of the consultant and she will be able to give you prices and whether they are private only, or do NHS as well.
I have found them really helpful and although you may be passed around a bit to start with, you will get to the correct person in the end.
Its a lovely hospital and the staff are great. I have had a few things done there as has OH and we were impressed by the care.
Honeyb
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You could get an ultrasound within 2 -3 days if you go privately, not 2 -3 weeks, cost around £300
To my mind 2 -3 weeks when you are suffering is a lifetime
I had a 'scare' with my heart last yr. I needed an ultrasound and was not prepared to wait and worry. I simply called my nearest private hospital, booked an appt, took a referral letter with me and the whole process took 2 days.
It really is that easy and its the same process if you need to see a consultant.
There are lots of ifs and buts about what may be wrong with your daughter but there is clearly a problem that needs addressing. What you need is a difinitive answer and you need it quickly so that she can be put on the road to recovery
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I know what you mean, however just now she is sitting outside in the garden with friends and she's coping, i'm having to go by what she tells me. Also, what if this buscopan helps and ibs maybe doesn't show up on scan?
We really don't have £300 spare just now, but if she goes downhill i wouldn't hesitate.
Eddie. x
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IBS doesn't show up on a scan anyway Eddie - it's a diagnosis you are given once all other possibilities have been ruled out.
Taz
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Just to update, she's felling much better, maybe ibs right enough, but better to have the scan to rule out things. Back to school tomorrow and her cycle not too far away, lets see if things repeat themselves.
Eddie. x
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Thanks for the update. I had been thinking about her.
Fx
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If it is IBS, Eddie, I can recommend a great book - Irritable Bowel Solutions by Prof. John Hunter. You can get it on Amazon.
Bette x
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That's good news Eddie although IBS wouldn't release blood into the abdomen which I found to be the most worrying symptom unless it is endo?
Taz x
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I agree with Taz, Eddie.
Perhaps I am not following it properly, and if I have missed something, please forgive me. I don't always have time to read back all the posts.
My understanding is that (i) she has urine infections most weeks (ii) she had op - for appendix I think - during which they found blood from her fallopian tubes into her abdomen and (iii) she is exhibiting signs of IBS and (iv) she is regularly on ABs to clear up the urine infections.
ABs could potentially be creating her IBS since it destroys all the good bacteria we need to be healthy.
I am not aware that IBS could cause blood into her abdomen.
Did they comment or do any further tests when they found the blood in on her fallopian tubes and in her abdomen? Do they plan to follow that up?
Is there blood in her urine when she has the infection?
Has anyone linked the Urine infections and the blood in her abdomen? Are both symptoms a sign of anything else when considered together?
Sorry Eddie, I am just a bit confused and concerned that the situation appears to be floating from one set of symptoms to another without anyone pulling it all together as a whole picture.
She must be weary from it and you must be demented with everything else going on.
Fx
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Taz and Firewalker, you are both right.
She has had a good few courses of antibiotics, sometimes with positive urine tests, a few times untested. Initially not with blood in the urine. She had a few weeks of drink lots of barley juice and cranberry juice which in her opinion did help the symptoms. When she hap the laparoscopy there was no follow-up other than advice that if it happened again she would need to be seen by gynae. I was made to feel that it was fairly common for blood to be present outside the tubes, although i have never heard anyone else say that, until Taz linked the endo website. IBS? She was told years back when she had sore tummies that she had ibs, and i think maybe the gp has just linked it to this, but i do have doubts about it just being ibs. 1) When it started her back around her kidneys was very painful. 2) Blood in the abdomen, surely if this was true from ibs it would require further investigation.
Hopefully the scan will reveal the problem, when she went to a&e the second time i asked specifically about the blood in the abdomen and was told that she (doctor) would be able to feel if that was the case. As i said her period is due next week hopefully we won't have a repeat of this month. She has been taking the tablets Buscopan and losec so if it does come back i am sure it is not just ibs.
I do appreciate your thoughts and everyones input.
Eddie. x
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Eddie - I am going to throw you a curved ball here. It only occurred to me when I re-read the last couple of posts.
Do you know if she is wheat sensitive?
My own daughter also had sore tummies that we thought was IBS. At first we thought milk / dairy was triggering it. Then she was told she was wheat sensitive, and sure enough that was the case - more evident with some forms than others. Here is just one link.
http://solvingtheibspuzzle.com/wheat-sensitivity.html (http://solvingtheibspuzzle.com/wheat-sensitivity.html)
We read about the wheat/urine infection link at the time too. Here is another link to introduce you to the subject/idea.
http://www.99eyao.com/english/a/a4731.htm (http://www.99eyao.com/english/a/a4731.htm)
If you see a connection here, perhaps you could try a wheat free or completely gluten free diet for a few months and chart the changes. It cannot do any harm. Your scans would go ahead as normal.
As I said, a curved ball.
Fx
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Firewalker, It's not so curved. She has been tested within the last two years for celiacs, negative, but i didn't think about it still being gluten/wheat. She does eat quite a lot of bread and pasta? She was lactose intolerant until about age 8 ish.
Eddie. x
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These links do look like her symptoms, i wonder if she could be tested for food intolerance? Just received an appt for her, a cystoscope? Don't think she knew that was happening, i think this is from the original referral to urology.
Eddie. x
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Eddie one of the best ways to discover if she has intolerance, is by dropping stuff from her diet for a couple of weeks. If you think it's wheat, drop everything with wheat, it gives the body time to recover. Then reintroduce the wheat in small quantities. If symptoms re-occur you will have found your problem. Unfortunately, if it's not wheat and is something else in her diet, it could be a very long & laborious process trying to determine the source.
I'm lactose intolerant, but to date it hasn't caused me any problems with urinary infections, but we are all different.
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Hi Eddie. Wheat intolerance, wheat allergy and what sensitivity are perhaps different levels of tolerance - some may show up like coeliac and others may just be like IBS, although inside your system is struggling to cope with the wheat / gluten.
By removing it for a while - it can do no harm. Indeed, studies show (no time to find link here) that removing gluten completely (zero tolerance) can improve brain power and overall health.
Glad you found the curved ball something to think about.
Fx
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Yep, I'll do some research about changing her diet. Can't do any harm. Thanks.
Eddie. x
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What's with the box Eddie :-\
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Eddie has not updated her weight loss for a few weeks CLKD. She needs to bit the bullet and do it ;D ;D
She has been getting some gentle ribbing on one of the other topics ;)
Come on Eddie....fess up.
Honeyb
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Um....... what have i missed?
Oh, not lost any weight, frightened to go near the scale. :(
Eddie. x
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I'm frightened too. Only time they come out is to weigh suitcases these days! Lol Which I hasten to add are considerable lighter than me. ;D
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Update, She had scope yesterday, all fine and healthy as expected. Next step is an ultrasound on Wednesday. Now she has an infected throat, 4rth time this year, so possibly docs tomorrow unless it eases overnight.
Eddie. x
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Sounds like she needs a tonic! Could it be yeast/Candida problems?
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Hi Eddie
That's interesting that she has recurrent throat and recurrent Urine infections.
It may not be connected, but the Group B Streptococcus (GBS) Infections affect throat, vagina and bladder.
Anyway, here's looking forward to a helpful scan result.
Fx
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Get your GP to do a Strep test!
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We have a diagnosis, finally after a cystoscope showed nothing, an ultrasound was done, we had to wait over four weeks for the result because it was sent to Urology where we were originally referred but haven't had a appointment there. Anyway it turns out that she has poly-cystic ovary syndrome. The scan showed her ovaries to be almost double the size they should be. So she has hormone tablets to take, she couldn't have the best one though because she has had migraine headaches with visual disturbances? Also G.P. said that it doesn't explain the pain really, but i think that as we know the pain is definetly linked to her cycle that it will decrease substantially, if not then it's a referral to gynae. As for the urine infections? apparently they are not a symptom of PCOS so we still have to wait for the urology appt.
Eddie. x
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Urine infections can be linked to hormones though, I had several for 'no apparent reason' and in hindsight ...........
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Glad you have found out what is going on Eddie.
Did they say what the best outcome would be. Can they reverse any of the symptoms.
How is your other daughter and your mum?
Honeyb
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Hi Eddie
That's a shame that your daughter is diagnosed with PCOS so young (or at any time). My friend's sister has it and I know the journey she went through to get it under control. She rarely has any issues now and has two children. From speaking with her....
I am aware that a low GI diet is very important.
Chinese medicine and homeopathy / herbalism is known to be very effective.
Interestingly, there are emotional states to consider with this - and a change in lifestyles/realising what can help it emotionally could be a help. It can be read online. Food, sweet foodstuffs, anger, creativity are all linked to it.
There is also a book I know she read which she thought was really helpful.
The Low Gi Guide to Managing PCOS
By Dr Jennie Brand-Miller, Prof. Nadir R. Farid and Kate Marsh
Published by: Hodder Mobius books
Apparently their research is fantastic! You can get the book on Amazon for around £8.99
I hope these points help initially and you manage to find something that gets it under control.
Fx
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I hope that when the tablets start to work the ovaries should return to a normal size, her skin is really bad but has already started to improve after a week, she has always had a hairy back and arms, we did enquire years back about it but the g.p. just dismissed it, luckily she is very fair, strawberry blonde so the hairs don't show too much.
I don't understand how this wasn't notice when they did the laparoscopy back in February. The treatment is only progesterone and should completely stop her periods, but the long term prognosis is possibly being unable to conceive, but we are not thinking that far ahead now.
Eddie. x
Oh, Other daughter is still living with her boyfriend, quite happily. She hasn't had any more seizures and is now on the full dose of Keppra. The local council have now offered her her own tenancy, hopefully she will take it and the boyfriend can then stay with her?
Mum is doing great, still not really putting on much weight, but very much better, physically and mentally. They did find cancer cells in the glands when they did the operation, but between the consultant and mum the decision was made not to have chemo. So we just have to hope that they did remove it all.
Hows your Mum? what happened with her wee pooch?
Eddie. x
Firewalker50, thanks for link, i will google that, the only thing diet wise is that she is probably under weight if anything, she is extremely slim although maybe she will develop some curves now that she is taking hormones treatment. She would very much like that, she could bin her chicken fillets as she calls them.
Eddie. x
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Just an update. My daughter has now been on hormone treatment for pcos for over a year, and had started getting all the pain again recently. We went for an ultrasound last Friday and came home today to an urgent message from Gp to make an appt for tomorrow!
Eddie. X
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Any idea why Eddie. Scan results no doubt.
I hope they can get it all sorted out for her.
Let us know how it goes.
Honeyb
X
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No doubt HoneyB. She looks almost 9 months pregnant! Poor soul. Eddie. X
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Oh bless her. She is far too young to be having all these problems. All they want at that age is to be having fun.
Hope it goes well.
Honeyb
X
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Awe Eddie what a shame. Here's us with all our problems and your poor daughter having to suffer at her age.
Do keep us up to date. Sending you & her :hug:
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Scan just showed what we already knew, doc is trying to say its ibs? Well if it is ibs then she is in trouble. She did eventually refer her to gynae when daughter got upset. This pain is cyclic and debilitating, surely not ibs? So now she has anti sickness pills, anti spasmodic pills, anti acid pills, and fybogel too!
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What a shame Eddie. You're good mum, you're supporting her through this and I'm sure she will be appreciating it. Such a nightmare though that you're not really any further forward. How long will she have to wait to see gynae? Pain of any sort can be so debilitating. Sending :bighug:
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Thanks CG. I reckon we will have a wait for gynae now. However a few weeks back I had to take her to a&e because the pain was so severe, they just check the usual and give more codeine! They told her to go home and wait for her scan. I received an appt for another scan this morning as though she is now being seen at gynae. Should I cancel and wait for docs referral or maybe jump the queue? Eddie. X
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Jump, jump, jump, especially if it gets her seen quicker. :)
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I think we will, I will worry that they will give us into trouble for having a second scan, it won't cause her any probs other than an hours discomfort. Should still be quicker.
Eddie. X
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If they question it, say you would appreciate second opinion. No harm in that.
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Thought i would update on this, we had second scan which only confirmed poly cystic ovaries, since then we've had a stomach bleed which turned out to be caused by anti inflammatory medication. Great fun for the poor wee soul, we are not any further ahead, she misses school every week, subjects are failing again, but we are waiting for a referral back to urology to repeat scopes already done last year!
We did find out that her sister has inflammatory bladder disease? Does anyone know if that is hereditary? We really just need answers.
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Sorry you're no further forward Eddie. What a shame, must be quite depressing. How's her spirit?
Can't help with your question about inflammatory bladder disease though.
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Sorry to read this Eddie. Inflammatory Bladder Disease is another name for Interstitial Cystitis. I don't think it is hereditary though. http://www.bladderandbowelfoundation.org/bladder/bladder-problems/painful-bladder-and-interstitial-cystitis-treatments.asp
Reading the info from this site seems to confirm that bladder problems are all part and parcel of PCOS http://www.thesurreyparkclinic.co.uk/polycystic-ovaries.php
The more information you can gather on PCOS the better I think. Have you had a lot of help re this diagnosis?
Taz x
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We have had no support at all, when she was diagnosed with pcos they put her on cerezette which stopped her periods, but said there shouldn't be any pain with it? End of. She also has Joint hyper mobiltiy syndrome which i don't thin has any connection but is really bringing down her spirits.
She is 'going' to Kenya with her school next year and that is her focus, if she didn't have that she would leave school as she's missed so much. However i have to be honest about her health and their jury is still out on whether she will be allowed.
Taz i will look at these links, think i've seen the top one before. Thanks. Eddie. x
Just read the pcos link, Joint pain! Why can't we get this recognised as collective. Breaks my heart watching her go through this. Def not going to be Gran for a long time! Still to busy being a Mum anyway.
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Do you belong to a PCOS forum Eddie? This one is active http://www.patient.co.uk/forums/discuss/browse/polycystic-ovary-syndrome-1732 or there is an organisation called Verity which you have to join but which gives you access to all kinds of info to help deal with PCOS.
Taz x
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Thanks Taz. She's had a look and got some info. We are back to urology in a few weeks. We're following the ic diet and that seems to help. Eddie. X
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So here we are again, since before xmas she has had terrible bladder pain, which has moved to her back and kidneys, she got trimethoprin which did nothing, then three days later she got nitrofurantoin which did nothing, on Thursday doc saw her again and gave her co-amoxiclav and said it should make a difference within a few hours! Guess what? It's done nothing. We have appointment for tomorrow with same doc, and urology on 31st. She needs to find out whats going on.
Eddie. x
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Hi Eddie
So sorry to hear of the issues you daughter is having. I know of a website WWW. ERIC.Org.uk through work I once did as a School Nurse ...just wondering if they can help you? it is all about childhood continence and have professionals manning a help line. They have forums' for young people too...It covers all aspects of toileting so might be useful.
All the best
Mrs January
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What a shame, must have been a pretty Π¶∆Â¥ Christmas for all of you. Hope urology get to the bottom of it. Please let us know how it goes.
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Had a look at the ERIC website, daughter thinks it's mainly about younger people and more on bedwetting.
Back at docs today, new antibiotics, ciprofloxacin, and treatment for kidney stones and back on Thursday to see doc, he doesn't really want to xray because of the risk to her ovaries.
Eddie. x
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What risk to the ovaries .......... :-\
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Radiation is damaging to the ovaries. CLKD.
Eddie. X
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Wouldn't it be an ultrasound?
Taz :-\
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Gp said xray, maybe more likely to pick up stones?
She doesn't appear to be any better, so back tomorrow anyway.
Eddie.x
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Update, Saw doc and he decided against xray as 1 it should be with contrast dye, and 2 the appt for urologist was looming, yesterday we saw urologist who said 'interstitial cystitis'! No surprises there then. She has to have another cystoscope done, but this time under general and with distention. She had one 18 mths ago which was meant to be done under general but on the day they changed there minds and we were none the wiser, also the ongoing kidney pain he thinks is referred from bladder. So not genetic but two half sisters with it.
Eddie. x
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Oh heck Eddie, you really aren't much wiser after all that. Something is causing her to be ill. Cystoscopy isn't a pleasant procedure, but at least if it's done under a general they may be able to take time to find the cause of her problem. Poor girl! I had that done many years ago after an ectopic pregnancy, long story, but apart from discomfort afterwards and some bleeding everything was fine. Hope it helps her!
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My close friend has IC and found that the bladder stretch worked amazingly well for her.
Taz x
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Once the consultant explained it to us it did makes sense, although he said it only lasts for 6-8 months, and it is more painful for a few weeks as it heals. He also explained why the diet is essential and to get a book called 'you don't need to live with cystitis'. So on the look out for that.
Eddie. X