Hello,
Sorry, this is very long-winded please bare with me, I am due my next gynae appointment on Wednesday, and I would like to know other peoples thoughts on my experience and if it's similar to yous. (My first appointment was horrific, so this is also a mini-rant!)
Grab yourself a tea or coffee...
To start, I'll give a little background on my symptoms etc. (not officially diagnosed with endo):
- To begin with, my periods were what I classed as normal - although heavy and the odd cramping, nothing too serious that stopped me from doing things that I wanted to do. I only have two memories as a teenager where they were considered bad that they've stuck in my memory. The first, I was in the first year of high school sitting at the very front and the pain got so bad I vomited in my mouth and couldn't move due to embarrassment. Second, a year or two later I was sitting in a class and the pain got so bad my vision blurred to only seeing block colours and what I can only describe as my hearing dimming(?) as my teacher's voice got fainter. I had sweat physically dripping from me (face, hands and body) and my cardigan and shirt were soaked through. as if that was embarrassing enough I bled through the pad I put on only an hour or so prior. Other than these my periods were fine until I was around 19-20.
Fast forward into my twenties (23 turning 24 next month), I have seen several GP's - been accused that it was STI's (I was checked and clean), that it was all in my head and/or everyone has cramps and there was nothing wrong with me; also that there was no way a gynae would accept to see me without going through a very long list of medications. I have tried several birth controls, painkillers (paracetamol, ibuprofen, co-codomal, naproxen), buscopan (x2 different types), and tranexamic acid and lots of hot water bottles. Nothing really works to help with the pain although as expected the tranexamic acid helped lots with the bleeding - this left me with shorter periods and pain that now sometimes extends past the bleeding.
The thing is, my periods are now affecting my life - every single month. The pain gets so bad around 3-4 days before my period even starts and continues until pretty much the end of my period.
The cramping isn't just in the front of my stomach, its in my back and down my thighs. Standing up straight can be impossible, never mind standing for the kettle to boil or walking a few steps at a time. The cramping is pretty much consistent and can get very intense to what I can only describe as a contraction (never been pregnant so it's my guess). I have vomiting and nausea, painful bowel movements (primarily on period), bloating, pain with sex, fainting or feeling like i'll pass out due to the pain. There have also been a few occasions where my vision has blurred again to where I only really see a merge of block colours (I find it hard to explain). The pain also wakes me up, so it's pretty full-on when my period is here.
As my GPs weren't really listening, I spoke to my Haemo-oncology doctor whom I have yearly check-ups with to ensure the maintenance of remission from ALL as a child and general health(?). three years ago he has said he would refer me to gynae and theyll look over my case and send me an appointment if they feel like it was an issue for them. Nothing ever came of that until my haematology appointment the following year when my Dr asked how the appointment went and if they got to the bottom of the pain. I had said that I didn't receive one - to which he showed me what was on his referral letter and that thing back from the gynae pretty much theyll see me. He then referred me again.
Since the initial referral, I had moved back home from finishing uni and moved back to the GP in my hometown. I met with her to make sure the referral did go through and spoke to her about the problems I was having. She was certain it was endo and that I'll most likely need a little surgery, and if I didn't get my appointment by a set date she would follow it up. Thankfully the appointment came through and I started to feel like I was actually getting listened to.... until actually attending the appointment.
The 'one-stop' clinic was running late (coming from having a range of prior medical issues I was very much used to this), I wasn't phased initially. The gynae had explained that the other consultant was on holiday (or something) and so she was seeing two lots of patients that day. Then I sat down...
To begin with, she didn't really ask what the issues were- she was more interested in my haemo-oncology doctor (who had referred me to her) and how they went to uni together, and she's known him since they were 'really young'. Fast forward to me trying to say what was going on and what I've done so far to try to help my periods and that nothing was working. She proceeded to look at my most recent blood work and although borderline anaemic and B12 deficient, she had commented on how my bloods were better than hers and that I was so young and health etc. She wasn't interested in what I had to say at all and was very dismissive, told me to go back outside, empty my bladder and wait till I'm called into the examination room.
She tried to do an internal ultrasound - however, she had to stop as I was in agony to the point I was in tears and in her words 'jumping off the bed'. Her comment from that was - from what she saw my ovaries were fine and I was fine (further running in line with my older GP that it was in my head). She then moved onto looking at my (cervix?) she then made a comment to the nurse saying she wouldn't be able to open (something, I missed the word), so she gave up on that too. After that, she pretty much said I was fine etc, told me she'll proscribe buscopan to try (I had already mentioned I had already tried it in the consultation room and said it again then and acted surprised as if I hadn't already mentioned trying that and how it didn't help at all) and I should refer myself to (the doctors that deal with the bowel- gastro-something??) the next time I am at the GP. By this point after the painful examination and her brushing me off (she couldn't have got out the room quick enough), I broke down as she wasn't interested. All I could think was I spent 4 years trying to get seen by the gynae (with real symptoms/issues) and she's now wanting me to see another specialist where my bathroom issues are only really there when I have my period. As she was leaving I mentioned Endometriosis (as per the GPs suggestion on what's going on) and she seemed shocked I even knew about it. Her response was that the only way to know for sure was surgery (which I knew) and that she wouldn't put her daughters through it so wouldn't consider it for me.
Again, I am not confirmed that I have endo and I may well not have it- although from what I've heard from others and the GP im now under, it lines up more than any other option just now. I have a follow-up appointment with the same doctor on Wednesday and I am getting very worked up about it.
Does anyone have any tips on ways to try and make my gynae listen or to ask her to provide some form of information on what could be the possible issues? Do others have any experience ticking all the same symptoms that I have and been positively diagnosed? Have others also found the examinations excruciating?
I am worried if I push for her to check for endo and the lap comes back negative I'll be branded that the pain is psychosomatic and that I won't be taken seriously. Genuinely, my experience so far hasn't been pleasant. I personally don't want to keep taking medication for the rest of my life! With my medical history, I feel like I'm treated as if they think I want something to be wrong with me at times. However, what they don't understand is I don't willingly go to doctors, I'm terrified of them - this was something the gynae actually successfully picked up on. Aside from having ALL as a child, I had meningitis at 18 when I was home alone and didn't go to the GP for 3 days because I thought I was fine (thankfully it was only viral, despite this, I spent 4-5 days begging the doctors to let me go home); I had a lot of nerve issues in my left hip for years during high school (which isn't completely gone) and ive had malaria as it turns out I'm allergic to most of those tablets and the one kind I could use the mosquitos were resistant to them although Tanzania hadn't updated the rest of the world - I landed in Britain and the next day the GP sent me to the infectious diseases unit where they kept me in due to my liver results coming back concerning (I was absolutely fine and was discharged when they started to return to normal). What im trying to say is that I don't tend to make a fuss unless its something really affecting me and my everyday life, due to my history I am honestly not keen on taking lots of tablets and would prefer just to get to the bottom of things and know whether or not things can be fixed.
If you have made it that far I would like to thank you - this has been more of a personal vent more than anything, although I really am worked up for the appointment on Wednesday!! Scared doenst cut it right now!
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