8. Get a second opinion...
Nice little introduction on the 26th October 2018. Very shortly after the pain management clinic. I got another UTI. Had to go to urgent care out of hours situation this time to see a GP as my doctors was all full. Positive. Cefalexin 500mg for 3days. ✌🏼 It so bizarre that this becomes a normal routine for me and I brush it off with nonsense. Just makes me laugh when a girl mentions they got one over the weekend and felt like they were dying. I’m like girl I feel you! Try 15/16/17 UTIs later, I’ve lost count🤷🏻♀️
Whether the September/October infection had come back with a vengeance or this was a new one, my body just didn’t get a break so this bout of UTIs.
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Still with no answers it was back to my GP, another infection after being discharged from urology just proved I was still not good! So he referred me to gynaecology at the women’s to investigate this route. He was baffled at my condition and wanted to help me, which I’m forever grateful for as most other doctors brushed this off with ‘standard UTIs.’
23.11.18- The first gynaecology appointment.
Women’s outpatients, new chapter, new hope? Well maybe not. I was met with quite an abrupt gynaecologist who personally, I felt like he just wanted to go home😒 First of all my medical records didn’t appear on the screen and after the typical spiel of my life, he said he thought my doctor and I quote was “cheeky” for referring me back to the hospital after urology had discharged me. He was basically laughing in my face.
I said well my doctor is concerned about what’s going on and felt like you could help me in some way rather than leaving me to get antibiotics after antibiotics. He said straight away that there was nothing he could do. Never even examined me my pelvis, back etc like the other doctors or asked me deeper questions about periods etc. He just wrote a letter to URO-GYNAECOLOGY explaining he wanted to transfer me over. This team are gynaecologists who specialise in how the urinary tracts and bladder interacts with the female organs too. Years ago many people thought they were separate but this whole line of medicine shows the cross link between the two systems.
I thought great. Just pass the parcel like I don’t matter. So again I had to wait for another appointment. I reflect on this and think what if I was discharged here again. Back to nothing. Definitely one doctors opinion is not valid in your health! Remember that!🙌🏼
20.12.18 - This day was a bit of a game changer!For the first time in all these appointments, I met a WOMAN gynaecologist. Not that I’m sexist in anyway but I felt like someone finally understood me and the difference was phenomenal.
The usual questions came, blah blah blah and then she began to ask me what tests I had done.
“An internal examination? You must of?”
To all of these questions it was a no.
I hadn’t heard of half of them before? I was “too young” to have a smear and nope, no one had give me an external before?
She was in utter shock. She said after around 3/4 years of all of this happening she was surprised my GP hadn’t give me an internal examination before never mind one of the consultants at the hospitals.
She booked me in for the urinary flow tests and explained she wanted me to keep a urine diary at home, measuring how much wee I had by pissing into a measuring jug every time I peed😩 I had to bring this little diary with me to the next urinary flow appointment
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After she booked all of this on the screen, she asked if she could do an internal examination now! She was so shocked that no one not even my GP had done it before or the fact, this could’ve been the cause of it all. She asked for consent and ushered a chaperone into the room as I was on my own.
I’ve got to the point where I would literally let them try anything, obviously I felt nervous but she explained everything she was going to do and over to the bed it was🥴
I took off my pants, laid down and first she cleaned all her instruments and lubed them all up😑 I took a deep breath and as she turned round from her table of utensils, the contraption appeared. I thought it was absolutely huge and never going to go anywhere near me🖐🏼
She used what’s known as a speculum, basically a plastic duck bill shaped instrument that goes in and widens the vagina, so they can examine it properly.
She told me to breath and relax during this. Well no way could I do that! It literally took my breath away, it was quite tight and uncomfortable but didn’t last well long. I’m actually not too sure if she took a smear swab or not? But generally this is the same procedure as a smear test. She took that out after a minute or so and said the manual exam was next🥴 She lubed her gloves and then used her fingers to examine inside. This wasn’t as uncomfortable but still a random woman feeling around should we say. She did this to check for any obvious masses or cysts, abnormalities in the vaginal wall or damage to my cervix.
Whilst she was still there, she decided to tell me, I was making it slightly difficult because I’ve got such good pelvic floor muscles. Suppose there is a bonus out of all this🤷🏻♀️
Once she was all done, (she never noticed anything malicious) she told me to clean myself up and come back to chat. I wanted to just lie there for a second, to just gather my thoughts after that event hahaha. They also gave me a pack of wipes/tissues to clean myself after the KY jelly used practically gets everything😷
She then began to discuss the other tests she wanted me to try. She was convinced - and this was the first time a doctor has mentioned it to ME, is that she thought I have Interstitial Cystitis (IC)/ Chronic Painful Bladder Syndrome.
She explained a cystoscopy (a small camera into the bladder via my urethra) was the only way to diagnose this and believed this was the best next step, even though it’s very unpleasant, it must be done.
When I’d brought up IC to other doctors/consultants, they would always try and avoid the situation, acting as if I act like a hypochondriac. I literally visit the doctor with a new theory every time to try and guide their investigations because before this point nothing got done🤦🏻♀️ I was fed up. I do research like hell, that’s what I do at uni, how I revise, if need to do the whole outside subject before understanding one concept so of course I’m going to do that with my body as well.
I signed a few consent forms, read all the information packages she had gave me and she actually wished me good luck before I left the room✨ There was some hope after this appointment. I hadn’t cried like the others, I walked out with a smile on my face, weird when you’ve just had a stranger and several instruments too close for comfort🙈🤣 ...and it was a step in the right direction.🙌🏼
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Around 2 weeks after the amazing appointment with the urogynaecologist, it was time for urinary flow or uroflowmetry I believe it’s called.
So this appointment was a funny one. I turned up to the department with no information at all🤦🏻♀️ but I brought my urine diary woooo! I always bring water as well because usually I have to do a fresh sample for the doctor or it involves an ultrasound etc. So I basically had to fill my bladder and sit on a ‘special’ toilet which recorded flow, amount, time all those sorts of things and then get a ultrasound after to see if my bladder emptied.
So I drank a bottle of water, went to the toilet and it was not enough for a good reading😫 the nurse told me to go back and drink another bottle before coming back. So the waiting room it was for almost 30/45 minutes.
In this time I met a lovely lady, who basically told me her life story😂 typical day out in Liverpool. She politely asked me what I was here for, mid conversation and of course makes the waiting room atmosphere a bit less boring. I explained everything and she explained hers, telling me she has had ‘the botox’ several times. So I immediately thought in her face where else?🤷🏻♀️
Well she meant in her bladder! With overactive bladders, if the typical ‘bladder training’ techniques don’t work, (basically trying to hold off going the toilet so it’s not every 20 minutes, reduce caffeinated drinks, try to reduce getting up in the night etc), Botox in the bladder is the next option!
It basically tightens up the bladder wall muscles to prevent incontinence and reduce the amount of times you have to go! Well I was baffled never heard that this existed!
After the delightful conversation, it was time to try again, back on the special toilet, beep beep beep, the reading on the paper flies out the back, the nurse removes my wee out the bucket - lovely job🤢 and I go straight into the ultrasound room to get checked.
All my results looked normal, only 30ml of wee left in the bladder, which I thought was weird, I expected it to empty out completely but apparently this is within normal levels.
They did this to check if wee was being left in the bladder or in a ‘kink’/dip in the urethra. This would then be a site for bacteria to grow here, causing the infections. However, this was not the case.
My flow and bladder were all good. So I waited for the next test and this was the cystoscopy. The moral of this story is that one doctor can make all of the difference. If I hadn’t of seen her, maybe my diagnosis would be further from what it is now who knows?...
