Getting Diagnosed with Endo

[Dizzle13]

So, I'll try cut a long story short.

Always had heavy periods from starting age 13. As I approached 18 I was having two periods a month, painful, heavy, sometimes clots, pain during sex, immense back pains and high body temp. Dr's told me I'm young, messy hormones, will settle, here is the mini Pill.

Mini Pill made me bleed every day of being on it and made me depressed. I cannot have the combined pill due to migraines and DVT. Due to how heavy my period is I can't have the copper coil as I already borderline anemic when my periods are bad (when having 2 a month I was anemic) I had various blood tests taken, when I had a blood test during having two periods, they said I was showing as potentially infertile? But not to worry as this could be the "false" period. (I worried) I then tried the injection which I also bled for three weeks and spotted.

Between all these Hormone treatments it took about two years of constant back and forth with doctors. Usually I'm assumed to have an STI as their answer (I have never had one but they always test) when they're negative "my hormones will settle".

Eventually they said the Hormone Coil is my answer, I obviously am willing to try anything. So it was inserted, that night I had pains, like bad period, I assumed normal as it had just been put in. The following afternoon (a day before I was due to fly to India for work) the pain was unbearable, and my legs had flared in rashes rejecting the coil. Dr's told me to go straight to AnE. One nurse told me it was infected (I assumed this). However, I was kept over night as they couldn't see the coil and assumed it was implanted in my womb.

I then had the ultrasound camera the next day. Some cysts were also spotted. Confirmed I also had a tilted womb. They told me the coil was fine in place and thy could see it and it had slight infection but normal due to being put in?

Due to still being in pain I asked them to take it out, but no nurses were available (thankfully) and they sent me on my way saying I'm fine. Day after rushed into an emergency appt with my Dr's, who said it can't be removed as it was infected and could cause PID if they removed it. Lucky for me the hospital had no nurses at the time as they didn't diagnose the infection or provide antibiotics. Their actual diagnosis was "constipation". Even though, excuse the French, I'd had a shit an hour before their scan.

So three weeks of anti biotics later, feeling drained as I bled every single day since it was put in. My Dr's finally agreed to take it out. Buuuuuuuuut they couldn't find it, shit themselves and sent me to AnE where after all the same scans again, it was basically fish hooked and ripped out of me! Painful and gross! And also another 2 weeks of anti biotics. I lost alot of weight and became very fatigue.

After that ordeal and being told it was my last option in Jan 2018 I came to the, I give up stance. I just wanted to recover and would take extra painkillers. Since I have been suffering immense pain in my periods, pelvic pain before and during cycle, sometimes in the middle, which I'm assuming is ovulation pains?

I have been back to the Dr's since, prescribed mefanamic acids (highly recommended however I take every 4 hours not 6).I actually bought these myself from indai before Dr's decided to prescribe, naughty I know, but, I was in pain and a friend recommended as they worked well for her. I'm also not sure if they cause more pain sometimes due to clotting the blood which for me, is already the case?

I then passed out from the pains of a period a few months later and decided, the give up attitude is not an option as this was controlling my life. I bleed through clothes, and can bleed through a tampon and pad easy. As you can imagine with the pain and anxiety of bleeding through my clothes, work and social events aren't appealing, nor is sex. I basically want to curl in a ball and be alone with a hot water bottle and some strong ass painkillers

So, I have been on a waiting list for a potential laproscamy (I can't spell it) for 4 months, but finally, an appointment in August. Now, I'm worried I'm going to be passed about, as every time I have gone back since we start from the beginning and go round and round, make little progress, back to beginning. I've now had back pain for 3 months (rest and painkillers were the answer) and I get pains in my lower abdomen frequently.

I don't know if I maybe have PID onset, or my endo is growing and applying pressure around my womb and organs, is that a thing?

I've shared my story to see if anyone has advice or has had similar issues? Or if there is anything to say that makes a Dr listen! I feel like surely heavy periods, which are now almost every three weeks, but sometimes I get the cheeky week early one that likes to pop up, literal pain in my arse! Surely this irregularness and endo in general affects your mentality?

I was never really a low person, but I feel (minus the PMS) I find myself down and drained and just feeling... Meh. My anxiety seems to have got worse, probably due to other life stresses ontop of me wondering if I'm infertile or have a womb covered in endo.

I'm considering private if I get no further after my next appointment, is this advisable?

Thanks for reading, I know it's a long one

[Sophiii]

Hey hun , this sounds so stressful sorry you had to go through all that shit I had similar problems to you I’ve had them for a few years in jan I saw the gynaecologist and they told me I needed to have a laparoscopy within 6 weeks of course this never happend . I got an appointment for June . A few days before they cancelled it which gave me huge anxiety . As I had to arrange time off work and everything was a big mess and in between this time I was constantly in and out of hospital . After the first lap had been cancelled after waiting 6 months they rebooked it for July and I’ve just had it done a few days ago . You need to just be persistent with them it’s quite likely they may cancel it but I think they surely can’t cancel it twice . But the best thing for you would be for them to look inside maybe see if August appointment happens and then if not maybe try private .