To want doctors to ignore my bloody age and do proper tests??(31 Posts)
Some of this may be TMI for some so I apologise but I am quite frankly at the end of my tether.
I'm 36 and I've not had any children and never been pregnant.
4 years ago I started getting UTI's after being with my partner.
Was told to do all the things I was already doing such as going to the loo straight after, washing before and after etc etc nothing was helping.
I had a particularly bad one, one day and afterwards it felt like it never quite went away despite all my test results coming back negative.
Symptoms were getting worse and I tried everything I could think of to help it go away, changed my diet to a very bland one and still nothing helped.
I then eventually managed to get a cystoscopy and a urodynamics done and an ultrasound and nothing abnormal was found.
I then went to see a gynaecologist who didn't know what it was but I had an MRI and they found a small amount of endometriosis. They decided that might be what the issue was and booked me in for a laparoscopy.
I didn't end up having it in the end as at the time my ex partner decided he couldn't cope with me being ill all the time and told me to move out so I had to find somewhere else to live and a new job so that got put on the back burner.
During that time I ended up having to switch my combined pill to a different brand, one with a lower one of the hormones, I forget which, and after about a week or so all my symptoms just vanished, no more pain or uncomfortable feeling.
That lasted for just over 2 years and then back in December had a really bad UTI that again never seemed to go properly after finishing antibiotics and all results coming back negative.
The symptoms also were "down there", very painful, couldn't be with my partner and it felt like everything was swollen. Pelvic pressure and pain and felt like I was sitting on something down there all the time. I was also getting burning and some mild itching which would come and go.
I would wake up in the night in pools of sweat even though my actual bedroom was really cold and no heating was on, didn't wear PJ's to bed.
Whilst I was waiting to see a gynaecologist I switched my pill to the POP hoping that would help.. well it didn't and my symptoms were starting to get worse.
Went to see a gynaecologist who insisted I had another UTI, sent off sample and came back negative.
Then she took swabs which also came back negative. I told her my back story about this happening 4 years ago and switching pills helped which she dismissed and said I was too young for it to be anything hormone related..
Then she said oh well we will just perform a laparoscopy because I know you have some endometriosis and that will cure it...
Went to see another gynaecologist for a second opinion and she said it was nothing to do with endometriosis and having the laparoscopy wouldn't help and would possibly make me feel worse whilst recovering from the op and still having this other pain. She said you have inflammation down there which is vaginitis, no known cure so just wait it out and hope it goes away....
I asked if it could be anything to do with hormones and she laughed and said don't be ridiculous you are too young...
In desperation I then went to the young persons clinic and asked them to test me for everything, I explained everything and she said vaginitis is usually caused by an infection so swabbed me but didn't send it off she just went straight upstairs and looked at it under the microscope and told me my good bacteria was very thick and strong and there was no trace of any infection and no thrush and all I could do is wait and see if it all goes away.
I then decided to stop taking the POP and the next day and the day after that my symptoms improved dramatically... I am still not "well" but the pelvic pressure and pain has gone and now I'm just getting burning and feel uncomfortable down there. About three days after I stopped taking it my mood changed, I was crying all day long for absolutely no reason at all. I would wake up in the night and just suddenly start crying!
I also started getting weird dreams about being really lethargic and weak and when I woke up I would feel very very weak. I also had butterflies in my stomach which would not go away and I couldn't sleep because of it, this then lasted all the next day. I haven't had any crying episodes since and the butterflies have been very mild and not woken me up or kept me awake.
I've not had a period in probably over a year and I hoped it would return after coming off the POP but nope, nothing - I stopped taking it 4 weeks ago.
So.. my main symptoms are - sweating at night, hair is falling out (that started 4 years ago when everything first kicked off its not clumps of hair but definitely lots of it), itchy legs only at night, burning and uncomfortable feeling down there which gets worse towards the evening, no period, weak feeling in leg muscles (walking up the stairs feels like I've run a marathon) and middle and lower back pain, zero libido.
I'm 36 I've had no children but because of my age I keep getting told I'm too young for it to be anything to do with hormones. What do you think should I be going back and refusing to leave until I have some further tests done?? Has anyone else out there had something similar and actually had a diagnosis??
I have booked another doctors appointment but the earliest I can get is the end of March so I'm desperately seeking other answers in the meantime.
Forgot to add - I've also been getting a really heavy type feeling down there which feels like unless I squeeze my pelvic floor muscle then its going to fall out! I assume I have no prolapse issue or they would have picked that up on the umpteen pelvic exams and ultrasounds?
Have you asked for a thyroid and vit d blood test?
You poor thing. Of course it could be hormonal, your doctors are stupid not to consider early menopause. I know someone whose hormone levels even in her 20s were similar to what would be expected in perimenopausal women. She eventually sorted it by seeing a specialist privately, it changed her life. Can you see a different doctor?
No Haggisfish but that is one of the things i am going to ask for in my appointment at the end of March -my mum actually suggested I ask for that though as there is a history of thyroid problems in our family - most of the women in my family have underactive thyroids and are overweight but I'm the opposite I'm very slim
Firstly utis are horrible, I think all the pill changes will not have helped. Try D-mannose power it works for uti. I was having regular infections but once I started taking this no more for me. I also think that you need a different doctor.
Borntobequiet - I could see another specialist but would have to pay for it as my insurance will only allow me to see certain ones and I have used up their second opinion offer so I am no longer allowed to see another gynaecologist.
Would it be a different specialist other than I gynaecologist I would need to see? I am assuming I would still need to get a referral from my GP though which again I cant do until the end of march...
Ask your GP for bloods. Entirely possible to have more than one issue. It doesn't sound as if hormonal contraception agrees with you, though. I also thought thyroid at the end of your post though not in relation to urinary or gynae symptoms.
As you suspect it's hormonal/possibly thyroid related I think you should see an endocrinologist and I think your GP should refer you on the NHS given your family history.
YANBU, you're 36 not 46! Not sure how true it is but I was told that Drs need to examine you standing up if they suspect a prolapse , I assume because when you're having scans and other examinations you're lying down and everything falls back into place...like I said, not sure how true it is, but it makes sense.
Thyroid blood test certainly. Could ask for Vit D levels and a menopause screen including a day 21 blood test. ( assuming that you are not now taking any hormonal contraception)
Sounds like overactive thyroid, they can test your hormones anytime, your prolactin could be high, do you get any leakage from your breasts?
Also I think you would benefit from a laparoscopy so they can see how widespread the endo is and remove it. You could have pelvic congestion which goes along with endo sometimes. It sounds like you have a lot of the symptoms but wouldn't know unless they did the op.
Is there anything that makes you apprehensive about the op?
Elvish- nope no leakage. The thing that makes me apprehensive about the op is the second gynaecologist said that she doesn't think its anything to do with endo and that having the op could potentially make my symptoms worse as I will still have the symptoms and be recovering from the op at the same time.
Oh gosh it could very well be hormonal. Why would a gp not even consider it a possibility?
Another thing though, I had similar recurrent utis that weren't utis. I had all the symptoms but all tests negative. It got so bad that they put me on trimethoprim anyway, which made me ill so they put me on Keflex, but after 5 days all symptoms came back so they put me on Ciprofloxacin (all this time tests for utis were negative) and I had a severe reaction which caused all sorts of issues including tingling and buzzing in my legs and feet, severe nerve pain in my elbows and heels, hair on my legs literally fell out (weird, I know), horrendous night sweats, brain fog....the list was endless. My gp thought I was making it up so I changed gp. I had every test under the sun and new gp suspected lupus. Everything was negative. I was referred to a neurologist who eventually agreed that the ciprofloxacin was the cause and that although he'd seen this sort of reaction before it was more common in elderly patients. I was mid 30s. I found a support group on facebook where thousands of people have had similar reactions to fluoroquinolone antibiotics (cipro, levaquin etc) ranging from mild to severe. Any time I read about someone with vaguely similar issues I ask if they've ever been prescribed cipro, and 9 out of 10 times they have.
Anyhow, I resolved the bladder symptoms using Waterfall D Mannose, which is a natural sugar that cures bladder infections by stopping the bacteria from sticking to the bladder wall so you pee it out. Although i didn't actually have an infection I did have bladder inflammation and the d-mannose seemed to calm it down, every time. So, worth a try if all else fails!
With regard to your insurance, if your last consultant is willing to refer you on to a different type, such as a urologist or endicrinologist, and you've seen them within the last 6 months, then it should be covered and you won't need a new GP referral
Madlizzy - unfortunately the two gynaecologists have insisted its not hormone related so I cant imagine they are going to want to refer me to someone else
Can you self fund seeing someone else after seeing the GP? There's a possibility that you can use your insurance after that point if further treatment is required, if the consultant is accredited by your insurance company. You could get the GP to do the thyroid blood tests. I'm not medical, but do know health insurance.
Funilly enough madlizzy I rang my insurance at the beginning when I needed to see a gynaecologist as the waiting list for my doctor is over 3 weeks - I asked if I paid to see the consultant myself would they then pay for treatment/tests after that and they said no :-( I had to have a referral from a GP or they won't pay out.
Bloody annoying when you have to wait so long to see a GP
I have looked into going to another surgery but the waiting times around my area are all the same 3 weeks plus.
I honk get your thyroid checked too. You don't have to be overweight to have an underactive thyroid. Mine is very unteractive but I'm slim. (Or it could be overactive which would explain the butterflies and the restlessness) Go to the docs and tell hem about your family history.
Too young?! What a silly excuse. It is really hard to get testing for hormonal imbalances unfortunantly. I was diagnosed with an under active thyroid, 5 years ago at the age of 20. I only found out as I'd had a miscarriage, and the midwife was looking into the cause of it. After several more miscarriages they referred me to the gynaecologist, who also found I had low progesterone. I'd never know about either of those conditions if I hadn't have been trying for a baby (I now have a two year old, and pregnant again ). It is very hard, but when you do find a good doctor stick with them! Push them for additional testing, don't allow them to leave you this way. Good luck x
SourBubblegum - how did they test that you had low progesterone? Just wondering as I've been looking around online and it says blood tests aren't effective to determine your hormone levels?
What a lot of rubbish that it couldn't be hormonal, teenagers have hormones for god's sake. Poor you though, it all sounds awful.
Weirdly you sympoms, the pelvic pain and pressure, sweats, itchy, burny vulva etc are almost exactly like my pregnancy symptoms. I'm assuming you know youre not pregnant, so my guess would be that your hormones are out of whack somewhere. Particularly given that you haven't had a period.
I had very irregular periods a few years ago and had lots of tests, the diagnosis was that something was off with my hormones (I can't remember exactly what but I think low progesterone might have been it) and I was younger than you, so I'm not sure why you are getting fobbed off. For me, two-three years off hormonal contraception and my periods magically became 'normal', so I blame the pill to an extent.
I would push for a second opinion (is private an option?) because this sounds miserable for you.
The progesterone was done through blood test, but they had to pinpoint the right date to do it. My periods were all over the place, so they weren't sure I was ovulating. According to my cycle, on the day I should have been ovulating, that is when they did the blood test. They said it was very accurate, and haven't tested it since. I didn't even have to enquire about the progesterone medication for this pregnancy, they just prescribed it based on the last results, taken 5 years ago. Always a good idea to do your own research, they always seemed to be taken aback when I hit them with information i had read online. It also means they can't palm you off, if you know what tests they should be doing.
What's your diet like in general - are you eating a good range of foods?
Join the discussion
Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.Register now »
Already registered? Log in with:
Please login first.