Hi everyone, I hope everyone's having a decent day!
I'm sorry this might be a bit long..... I have been passed from pillar to post again and again by various gyneas, doctors, nurses and I'm getting so much different information and fobbings off I don't know what to do.
I'll try and summarise:
Started periods at 10, started with bad pain and flooding at 12-ish
Drs fobbed me off until 14, when they tried the pill (I can't remember which one, I have had microgynon and cerazette) - as I can remember, this did help but then sent my BP sky-high so I had to come off it.
Had severe pain and flooding issues throughout high school, then implant fitted at 23.
I flooded constantly through 6y of implant cycles, with large clot losses with the pain reduced somewhat.
Implant was removed at 29 years old as I was due to get married and couldn't stand it any longer.
I was seen by gastroenterologists between 2017-2019 for severe nausea, weight loss and diarrhoea/constipation and had all the tests going (scans, 'oscopies, bloods, biopsies, xrays, faecal tests, all normal) and it was put down to stress / exacerbation of Coeliac disease (despite me being strictly gluten free for 10 years now)
I have also been thoroughly assessed for right shoulder pain - now put down to "damage from old riding accident" with no treatment given, except physio which I had to stop as it made it so much worse.
From June 2019 to March 2020, I was on no birth control or treatment and I was, to be frank, a mess. I bled constantly, the pain was unreal every month when my period *should* have been due, the nausea/weight loss/diarrhoea/shoulder pain was flaring on and off.
In March 2020, I went in and out of hospital 3 times with horrendous abdo pain, dizziness, losing large clots - I was diagnosed with a cyst and signed off work for 4 weeks (I have a physical job) and was in bed for 3 of those, on Morphine.
I then had an urgent referral to gynae in July after a hospital admission, who did a TV scan, external scan and MRI - I was told that there was a very significant indication of adenomyosis and late-stage endo with cysts and started on Prostap to help while I waited for a lap. It really did help, stopped my periods, helped the diarrhoea and sickness reduce and gave me more energy.
I made the decision to go private as I was struggling so much - I chose a general gynae surgeon who had an interest in endo cysts and menstrual disorders as he could see me in the October (I'll call him A).
I had the lap in November and the coil fitted and was told I was perfectly healthy, no issues at all seen.
From then on I constantly bled, the pain was very much the same but with additional areas/types, the nausea was debilitating so I booked in to see a BSGE specialist (I'll call him B) in Jan 2021 and he told me that I DID have adenomyosis and put me back on prostap as - in his words - he had no worries putting me on it long-term if it helps, alongside an oestrogen replacement and regular bone checks. I trusted this doctor, he came highly recommended by more than 1 of my friends.
I went back for my post-op check with (A) and he stated that he didn't agree with the diagnosis and that the treatment was highly dangerous, should never have been started and it was for a maximum of 6m. (A) then proceeded to check my coil (which had curled up and required a lot of 'poking' to retrieve, tell me that a lot of my pain is probably in my head and that I maybe need to find a better way to cope and signed me off. I also found out at this appt that the surgeon hadn't seen my scans or blood results before he operated on me, despite them being there for him.
I then spoke to my GP a few weeks later to try and figure out what to do next as I was no better at all and the GP told me - quote - "you just need to figure out a way of accepting it and moving forwards much like when people lose a child or get a cancer diagnosis" and told me again, I probably needed antidepressants (if she'd read my history she'd see I only got my AD prescription a week previous, have been on them since 16!) and counselling...she also said that Prostap should never have been prescribed at all (it's the GPs doing it for me...)
At that point, I gave up, I felt so defeated, I cried for hours and vowed that I was done with it, so I struggled on.
Fast forwards to last week, I started with 'contraction-like' pains, which put me on my knees, made me dizzy and sick and I ended up ringing 111 as I couldn't find my coil strings and they were concerned it had dislodged and as I refused an ambulance, asked me to book an emergency GP appt. Long story short after another argument with my GP who didn't see it as an emergency, I ended up being sent to hospital, where they couldn't find the coil either but an AWFUL lot of discharge. The gynae at hospital said I should never have been discharged in the amount of discomfort I'm still in and that the only difference she could see was that the coil had been fitted - so let's take it out. Great, I thought, then she couldn't get it no matter what she tried.
Went back on Weds for ultrasound to find it - it's there, in the right place, they don't know why they can't see it on exam, but this was ANOTHER gynae who does not want to remove it and wants me to wait until September when I have another gynae referral (with ANOTHER dr). She has said that I can have Prostap for 12 months.
Currently, I'm still nauseous (on Ondansetron), still having the odd contraction-type pain and have a constant, chronic low-to-moderate level of pain across my abdomen, more so to the left, radiating down my leg and causing numbness, right shoulder pain, fatigue, confusion, vaginal discharge, diarrhoea/constipation, deep pain during sex (and I'm pretty much abstaining due to pain), bleeding 4 days out of 7, pressure in my lower abdomen and struggle to bend over/crouch down and yet they're telling me I'm ok and it's in my head.
To summarise : I've been told 3 different things about the treatment I've been put on, I'm making very little improvement (the only improvement being the bleeding). I don't believe that the surgeon checked my stomach, bowel or bladder as they were never mentioned and aren't on the pictures.
Do I go back to (B) now with the potential that he'll ask me to wait until I can have another lap?
Do I email his secretary first to see if I can get some advice on when to go back?
I'm being told by my GP that it's not a physical issue and I need to learn to deal with it. (B) is the only doctor I've seen with it all that I have some trust in what he's said to me.
Is my story familiar? If I'm perfectly healthy, why are they doing all this? How can it be in my head? I feel like I'm on a knife edge all the time, I'm so defeated, so down about it all. I can't remember the last time I had a day with NO pain, NO nausea. I'm 31, I haven't ridden my horse properly in 12 months as the pain that comes is too much, I can't walk for more than 25 minutes without numbness and aching (and I was a BIG walker) I haven't been on my pole for years as it's too much and I can't get off the floor without using a table or something to haul myself up!
I don't know what I'm expecting, I think I just want some reassurance that I'm not going mad 
Pooky x
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