Endometriosis is a condition that affects 1 in 10 people who are assigned female at birth. Despite that, 54% of people don’t know what it is – rising to 74% of men. We want to help change that.
In the run up to Smutathon 2020 on September 26th, we’ll be sharing weekly ‘Endo Stories’, written by other bloggers, authors, and awesome people we found on Twitter. They’ll tell you about their experiences with endometriosis, and about some of the challenges they’ve faced, from diagnosis to treatment, from sexual pleasure (and pain) to fertility and menstruation.
Today’s story comes from Kitten, a wax play loving kinkster and endo warrior, who owns and runs Kandles by Kitten. She can be found on Twitter @KandlesbyKitten, and we also definitely encourage you to check out her awesome range of wax play candles! If you’re affected by her story, or by the issues discussed in it, please do consider donating to Endometriosis UK to help them help people all over the UK who are struggling with endo.
When I sat down to write this, I thought I knew how I felt about my experience with endometriosis, about my journey, about my story and the direction it took.
I thought I was just angry. Angry at so many things, at so many people. The anger was so overwhelming that I never stopped to examine why I felt so angry.
I just was.
But having the opportunity to write it all down in one place, as opposed to screaming staccato words of pain and despair into the ether in the form of 140 characters or less, made me realise that underneath it all is the desperate feeling of powerlessness.
I feel weak. Powerless.
I feel useless. Powerless.
I feel like I failed myself. Powerless.
I wasn’t strong enough. Powerless.
It’s my fault that I suffered for so long. Powerless.
It was a bereavement of sorts, losing control of my body, handing over that control to people who were supposed to try to heal it, who were supposed to care, yet feeling like they just made it worse, and that they definitely did not care.
I was 15 when I started having problems with my periods.
I was 29 when my GP agreed with me that it might be endometriosis.
I was 31 when I had a diagnostic laparoscopy, which confirmed I did indeed have endometriosis.
I was 41 when I had a second laparoscopy to ‘treat’ the endometriosis again.
I was 43 when I had a total hysterectomy and bilateral salpingo-oopherectomy.
In those 28 years, I had just one person who was on my side. Just one. My GP was wonderful, and always had my back.
Until I met her, I’d been back and forth to the doctors again and again and again. I was told all periods were ‘uncomfortable’ (despite the pain I endured being way past uncomfortable) so what I was experiencing was normal. I was given the contraceptive pill, which just made my PMS so much worse.
I was given a different pill, which regulated my periods but didn’t take away the pain, or stop the horrendous clots/super heavy bleeding.
I was given the copper coil, which caused agony when it was fitted (though the nurse doing the fitting told me I was overreacting and it wasn’t *that* bad and I must have a low pain threshold), agony for the 3 weeks that I tried my best to tolerate it for, and somehow made the bleeding even worse. I have vivid, humiliating memories of walking around Nottingham with my three year old daughter, and blood suddenly flooding out of me. She was scared, I was on my own, my jeans were literally soaked with blood, and I had to travel home on the train feeling sick and so horrendously self-conscious.
When I went back to the sexual health clinic to have the coil removed, the nurse was once again dismissive, uncaring, and didn’t give a single f*ck that the removal was also sickeningly painful.
I went home and sobbed.
I dreaded periods; the pain was always at least 7/10, even on 1000mg naproxen and 8x50mg tramadol every day. It always made me sick, I had to change pads/tampons at least every hour, but apparently, this was normal.
I had no voice.
Words, my words, spoken in desperation at appointment after appointment, were dismissed, ignored, put down to my being overly emotional (it’s just PMS).
I was powerless.
I thought I was going mad.
I was given anti-depressants.
The pain never stopped.
For five more years I… I don’t know…dealt with it, carried on, put up with it…I don’t know how to convey the reality of that situation. I felt I couldn’t go back to the doctors, because I was obviously wrong about there being something wrong, so I did what I was clearly supposed to do. I suffered, silently, cried my tears in private, watched my world grow smaller as the number of activities I could do dwindled. I curled up on the sofa in agony month after month, hoping my daughter wouldn’t ask to go anywhere, hoping she’d be content with staying at home, not going to the park or going swimming, or going out to see/meet friends. She lost a chunk of her childhood as I lost my will to fight.
My Mum read a newspaper article about endometriosis and showed it to me, asking me did I think this might be what was going on? All my symptoms pointed to it, but what did I know, right? I didn’t know how to make my voice heard.
Desperation is the driving force behind many an action, and eventually I tried again. I went back to the doctors and saw a GP who was new to the practice.
She listened, she read my notes, she looked at my article clipping, and said yes, it does sound like that may be the case.
She prescribed me mefenamic acid to see if that could help. It helped a little, but not enough for it to be my saviour. So, after a few months, she agreed to refer me to the gynae clinic at the local hospital.
At this point I want to be able to say that the gynae doctor was also lovely, and that she, too, helped me.
But she didn’t.
I walked into the appointment hunched over in agony, hoping not to vomit as she examined me, trying to hold back tears as she barely looked at me, trying, once again, to have my voice heard. She wanted to fit a mirena coil then and there, but I broke down, I couldn’t face that pain again. She then, reluctantly, suggested an exploratory laparoscopy, though she warned me that it probably wouldn’t show anything as she didn’t believe it was endo, and that she’d fit the coil whilst I was under the general anaesthetic.
I left feeling defeated, even though it was a victory of sorts. I was worried that she would find nothing, and that it was all in my head, and I was just being ridiculous, the pain wasn’t that bad, I was just a wuss.
Six months later I had the op, and endometriosis was found.
When she spoke to me afterwards, she wouldn’t even look at me. She spat the words out as if it was my fault that endo was the problem. She did qualify that by telling me she hadn’t found much, and that the amount she did find had nothing to do with the pain I said I was in. I was given a leaflet and told to get the coil changed when it ran out.
And that was that.
I will never forgive her for her lack of empathy, for her lack of caring, and for her attitude towards me.
I had relief for about two years. Periods, and the run up to them were still painful, but not agonising. The bleeding was still heavy, but I was not flooding every month.
Then the familiar cycle started again. Nausea, shaking with pain, crippling cramps, pain that had me doubled over, and began the week before my period was due, and lasted for about a week after. Out of every month, I got a week where I could function as a normal human being.
Seven days out of 28.
I went back to my GP who prescribed me heavy duty pain meds to help me through. She put them on repeat for me, and so I got by. Meds were reviewed periodically, and she upped my dose when needed. She was a great GP.
Unfortunately, she was difficult to get an appointment with, so at one stage I had to have a review with a different doctor, who told me he didn’t want me on the meds anymore, that endo wasn’t that painful, and to take paracetamol and ibuprofen. He stopped my repeats, and told me if it was that bad, he’d refer me back to the hospital.
I went home and collapsed.
I lasted 36 hours before I rang the surgery in tears and asked to see my usual GP. I could not stand the pain anymore. I hadn’t slept, because I couldn’t, my body hurt too much. Luckily she had an appointment free, so I went in, again, and she put me back on my meds, and told me that I’d been referred back to the hospital on the orders of the GP I’d last seen.
It’s so belittling, being told you’re exaggerating your pain, you’re making it up, you’re drug seeking, yet these are all accusations that were levelled at me at one time or another.
Why are those of us who suffer from endometriosis, and other painful gynaecological conditions, dismissed so readily?
Why are our voices worth nothing?
Why should we just put up with our pain?
Why should we stay silent about it?
Back to the hospital, another registrar to see, another lap scheduled. She wanted to put me on GnRH agonist after the op. That made no sense to me at all. Her reasoning was that it was to be used to confirm an endometriosis diagnosis. If my pain levels did not diminish, then it would prove it wasn’t endo causing my pain. Apparently.
I’d already had a diagnosis; I’d already had diathermy treatment (a piss poor way to treat endo IMO) but she wouldn’t do the lap without it.
I had no choice.
I had no choice.
Lap number 2, more endo found, GnRH jab given, go away, come back in 3 months for your next dose.
I will never forgive her for taking away my choice. I will never forgive her for dismissing my fears (GnRH is essentially a medical castration, again, IMO) about it putting me into a false menopause.
I was warned I may get hot flushes.
I wasn’t warned that my sex drive would disappear, or that my mental health could suffer, or that being on it long term could affect my bone density, or that medical menopause could be brutal on the psyche.
I don’t forgive her.
I suffered, immeasurably.
The pain did not go away.
I was suicidal, but hey, coil number 2, no periods, that’s victory right there, right?
I refused the second dose of poison (my choice of word to describe it), and asked about another condition, called adenomyosis. She told me there was no way it was adeno. She told me it was probably IBS as my pain hadn’t decreased by much. She also told me she was referring me back to my GP and taking me off her books for refusing the second dose.
I advocated for myself, and was punished for it.
I do not forgive her.
In the years that followed, my GP referred me to an endo specialist, who ordered an MRI, and I was back and forth to the hospital on the back of that.
I had three….three different registrars look at that MRI and tell me they saw nothing, nothing to confirm the source of my pain.
Back and forth to hospital every six months to see if anything had changed, if the fucking buscopan they prescribed for the IBS helped with the pain.
Fuck right off.
I was still in agony.
I lost my life to endometriosis.
I felt it was all in my head, that there was something inherently wrong with me, that I was defective in some way, that I was a coward for not being able to push through.
My life had crumbled. I couldn’t work, I had to sell my pony as I was too ill to look after him. I didn’t leave the house unless absolutely necessary.
Another hospital appointment, and this time a gynae surgeon looked at my MRI. ‘Ah, I can clearly see evidence of adenomyosis here’ she said. Clearly. Adenomyosis.
Three fucking registrars missed it.
Two years of goddamn buscopan and having to fight for adequate pain relief (my GP had left general practice, so I was at the mercy of whoever was available from then on).
I don’t forgive them, any of them. I never will.
I was offered a hysterectomy, which I eventually decided to have.
It is NOT a cure for endometriosis.
It is a cure for adenomyosis, however.
I still get endo pain now. My ovaries were taken in an effort to stop the endo being a continual problem. HRT aggravates my endo, but without it, I am suicidal, the mental strain of surgical menopause too much for me to bear.
I look back and I am angry.
I have yet to make peace with all the bullshit I got told, with all the bullshit we get fed to get us to go away, to shut up, to put up with the pain, to stay silent so as not to inconvenience anyone.
I lost my life to endometriosis because only 1 person in those 28 years wanted to help.
I will never forgive those who contributed to that.
But I am no longer powerless.