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.
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AIBU?
To want doctors to ignore my bloody age and do proper tests??
30 replies
Ahousemadeofcheese · 22/02/2017 09:13
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