I think it's safe to say that my reproductive organs hate me and it's hard not to take it personally, especially when they beat the crap out of you every month. At the end of last year I had a few too many to drink and joked that I would start a blog from the perspective of my angry uterus, Patricia and in that moment The Endo Monologues was born. I would never have imagined that a drunken wellbeing project would allow me to connect me to so many other individuals struggling with it too and I hope that by sharing my journey with you, you know you're not alone.
Now, not to brag but it's not just endometriosis that gives me grief; I also suffer with adenomyosis, vulvodynia, vaginismus, IBS and hypothyroidism. I'm not entirely sure what makes my body seem to be an attractive host to this plethora of conditions and all of them suck in different ways and the majority of the problems started when I got my first period at age 11.
I always knew that I was going to start my period at an early age as all the women on my mother's side of the family started theirs around the same time. However, what I was wasn't prepared for was how horrific my periods would be. I don't recall a single moment during my sex education where someone explained what was and what wasn't normal about your period, when I should be concerned and how to get help if you think something was wrong.
This problem stems back for generations; I'm the fourth generation of women in my family to suffer from debilitating periods and we all assumed it was normal because we hadn't been told otherwise. Obviously I now know that what I experienced wasn't normal but I think had I been educated better, I would have spoken up much sooner rather than just enduring it.
By the time I was 14, my periods would last for weeks at a time, I'd pass huge clots and would soak through both a tampon and sanitary towel within an hour of changing them. The pain was so crippling that I would miss school a few days a month when I had my period and I constantly panicked about bleeding through onto the chair whilst I sat in lessons. My mum decided enough was a enough and booked me an appointment with the doctor.
However, this raised issues of it's own as I was mortified that I would have to speak to a man about my period; any prior conversations about periods and sex had been with women and I remember giving him the absolute minimum information about what was wrong. Yet I didn't dare (or even think to) challenge his advice so I went on the contraceptive pill.
Fast forward two years and I found myself struggling with constant fatigue, no matter how long I slept I was always tired. Back to the doctors and I was diagnosed with hypothyroidism which seemed to explain the issues with my periods and the pill seemed to help with the severity and longevity of them.
As a result, I stayed on the pill for over a decade.
Yet in my early twenties the symptoms started to come back, bringing new ones with them. Whilst the pill kept the length of my period in check, I was back to passing huge clots and soaking through both tampons and pads within an hour of using them. My period bought crippling pain where I was bed bound for days; it felt like my ovaries were being stabbed and my uterus was being squeezed with an hot, iron fist. Eating certain foods would make me bloat and other times I would bloat for no reason.
It started to hurt when I had sex, when I orgasmed, if I exercised or stood up for too long, if I had a bowel movement I was greeted with shooting pains in my rectum. And even then, I still thought it was something that I had to endure. When I started to have a constant sensation of pins and needles in my pelvic area and sex became too painful to tolerate I finally went back to the doctor.
Now remember how mortified I was at speaking to a male doctor about my periods? Seems that my anxiety wasn't unfounded.
In September 2015 I made an appointment with my GP and explained all of my symptoms expecting you know, my doctor to take me seriously. Instead my doctor's first response was - and I quote - 'a lot of women who have issues with their periods because they are promiscuous'.
Yupp.
At no point had I spoken to my doctor about my sexual history so not only did he assume I was promiscuous he was giving me utterly false and completely unprofessional feedback. After the initial shock of that statement and explaining that my sexual history has no link to extended, heavy periods, he booked me in for STD testing despite the fact that I had told him I had those done a few weeks prior. I knew I was clean and yet he disregarded it and ignored me.
A week later when I rang up to get my results, I was told by a different doctor what I already knew and that I had no STDs but it seemed I had thrush. I somewhat shrugged this off as I've had thrush enough times to know that it's easily treatable and instead asked what did that mean about my pelvic pain and periods. I still remember the silence as the doctor quickly scrolled through my notes on his computer to see what I was talking about. But, to his credit he immediately referred me for a trans-vaginal ultrasound.
Whilst uncomfortable, this came and went and I waited for what - if anything - the results would show. On Christmas Eve I was left a voicemail by Dr. Promiscuous stating that the scan had come back fine; no polyps, cysts or anything untoward. Once again I resigned myself to the fact that I just had horrible periods and my hypothyroidism was the cause and tried to put it to the back of my mind, in hindsight this is when I should have asked for a second opinion or pushed for more testing but I had yet to have the confidence to do so.
In March 2016 I went to the doctors for an ear infection and brought up the fact that nobody had really gone through my results aside from that one voicemail. I hadn't seen this doctor before but she matter of factly explained that the scan had showed that I have 'a thickening of the uterus'. When I asked if that would effect my fertility I was told no. Whilst annoyed that nobody had explained this to me sooner, I trusted the doctor when she said that was what was causing the issues.
Now, you might think up until this point that I've been rather calm about everything but remember I was still acting on the belief that I should trust what my doctors told me. However, in June 2016, shit hit the fan.
At this point I was still on the pill and went to have my blood pressure checked so it could be re-prescribed. When checking my notes, my nurse asked if I was on the pill because of my endometriosis. I asked her to repeat herself and then after a few moments replied that I had absolutely no fucking clue what she was talking about.
Very kindly, she went through my notes with me and explained that following my ultrasound that they suspected I had it. The same ultrasound that I had received the voicemail saying everything was fine. The ultrasound I had 6 months ago and was later told it was just a thickening of my uterus.
For years I had be made to feel that it was just in my head. For years I thought what I was experiencing was normal. For years I was made to believe that I would just have to deal with it because that's how it was in my family, only to find out that the doctors had suspected what was causing the problem and yet didn't feel it necessary to tell me about it because y'know my reproductive health and wellbeing obviously isn't important.
As you can probably tell, this still makes me absolutely furious and I think I'm quite justified in the fact that I hit the roof.
I put in a formal complaint and took action against my doctor and even then I was met with resistance, that I had misinterpreted what he said; he was only speaking to me the way he would speak to his daughters (which made me really kick off) and that they had told me their suspicions all along. When I challenged this and asked why hadn't I been referred to a gynaecologist I was met with a wall of silence. As far as I know, Dr. Promiscuous doesn't work as a doctor anymore.
Things moved quickly after that and I was referred for another trans-vaginal ultrasound at the request of my new gynaecologist. I hadn't had sex for months and wasn't prepared for the fact that things had gotten significantly worse. The moment the probe entered me, I passed out from the pain and woke to a very kind nurse holding my hand. I was told that both of my ovaries were immobile and that my pain response was very likely the result of endometriosis growing on my bowel and bladder.
My consult with my gynaecologist went smoothly and I finally felt that I had a doctor who understood. She booked me for my first laparoscopy in August 2016 and advised me to have a Mirena IUD inserted at the same time. After my procedure I was told that she had found endometriosis on both my ovaries, bowel, bladder, uterus and on my pouch of Douglas. It was a surreal moment, I felt angry that I had allowed myself to be gaslighted and lied to by my doctors, guilt that I hadn't fought harder and then immense relief and validation; I was right that something was wrong with my body.
For awhile it seemed that my endo was under control; the Mirena had stopped my periods and any pain I had was minimal and linked to what I called my phantom cycle. Things were good. But then I had a reminder that I needed to have my smear test at the beginning of 2017.
This was the first examination I had following my surgery and I became hysterical as soon as the nurse came near me. My result came back as abnormal and I was referred for a colposcopy. Once again I broke down as soon as the doctor came near me (a lovely nurses held my hand) and whilst I was given the all clear, I was told that it was incredibly likely I had developed post traumatic stress disorder as a result of the medical negligence and the fact that my brain now associated pelvic examinations with pain.
Fast forward to 2019 and I started to experience painful sex again, to the point where every time I had it, I would bleed and my vulva would burn. Once again I went back to the doctors and pretty much demanded to be referred to a gynaecologist.
My consult was In February 2019 and I was diagnosed with secondary vaginismus and vulvodynia and started dilator therapy. Whilst I made progress, I still found that I tore with penetrative sex and was advised to start taking a low dose of amitriptyline to help my anxiety in June 2019. My body had entered a vicious circle of expecting pain to happen with sex, tensing which then made sex difficult and causing my fourchette to tear.
By the end of 2019 and my endometriosis symptoms started to come back. I had chronic back ache, endo bloating, stabbing pains in my ovaries, pain going to the toilet and the pins and needles sensation had returned to my pelvis.
In November I requested to be referred back to the gynaecologist who did my first laparoscopy and in February I had a trans-vaginal ultrasound (which the same radiologist who did my first and remembered me!) who confirmed my ovaries were once again immobile and that a 3cm cyst was growing on my left ovary. My gynae stated she would like me to have an MRI to see how extensive the endometriosis was and in March she explained that the scan seemed to show I once again had endo growing on my bowels, ureter tubes, bladder and ovaries.
The initial plan was for me to start Zoladex injections to reduce the inflammation my endometriosis was causing and I would have my second laparoscopy in May. However, with the way the world is at the moment I'm still waiting for a reschedule date and am on Zoladex until it happens in combination with Tibolone. What happens next is anyone's guess.
If you've made it to the bottom of this post, thank you for taking the time to read it. I know it's quite the story but I will always be as honest and transparent. Endometriosis, adenomyois, vaginismus and vulvodynia suck but I hope by reading this you know you're not alone.
As always, my inbox is always open.
Love,
L (& Patricia)