Guest post by Dee Montague

Fun fact: I was born with asthma, and no healthcare professional has ever, ever suggested my asthma symptoms were normal, psychosomatic or something I just had to put up with. Nor have I ever been denied medication or treatment pathways. My experience as an asthma patient is brilliant. My treatment is almost entirely patient-led, I have regular reviews, and healthcare professionals almost always understand what asthma is and how it can affect patients. My symptoms and how I deal with them are not viewed as a character flaw.

How I wish I could say the same for my menstrual health.

I started my periods when I was 12, and often experienced symptoms way beyond the mild cramps we’d been warned we might experience during ‘the period talk’ at school a year before. It took 23 YEARS to be diagnosed with endometriosis, and later adenomyosis. I had my second excision surgery alongside a total hysterectomy in February, and – despite experiencing debilitating symptoms of M.E – I feel a million times better for it.

Perhaps understandably, I’ve lost count of how many times I visited the doctors to try to get help. But I can tell you I tried what felt like every single contraceptive pill going, had two Mirena coils fitted (not at the same time), had countless blood tests, STI tests and ultrasound scans, had two laparoscopic surgeries with general gynaecologists, was diagnosed with anxiety and depression, prescribed anti-depressants, and was told over and over again that what I was experiencing was normal or that it was IBS. I had dangerous reactions to ibuprofen and anti-inflammatory drugs, and spent around a year with a severe codeine addiction, which was never addressed by any doctor I saw during that time.

One GP took me seriously and agreed that I had endo (my first laparoscopy found scar tissue, which was ablated, but the gynae team lost my notes so said it was from an infection and discharged me with a diagnosis of IBS). However, although she gave me my first coil and five years of little to no symptoms, I was still not referred on to anyone who could formally diagnose me and treat the progressive disease. Eventually I was forced to pay for a private consultation, something I would have done years earlier had I known that – contrary to what every healthcare professional told me – it would have given me access to an actual specialist who could treat me. I’m sure many would argue that no one forced me, but by this point I had exhausted every other option at least twice and got precisely nowhere. Not for the first time, I was also suicidal.

Shortly after I moved to Wales in 2016, I was finally referred to gynaecology again, for the first time since my laparoscopy in 2003. During this process, I saw a different doctor at almost every appointment, each one rarely making notes (this wasted a lot of time as I had to repeat my history to each doctor over and over again), but my final appointment at that department was immensely traumatic.

From the moment I walked through the door, the consultant was rude and abrupt. I was made to feel like I was wasting his time; they’d done a laparoscopy, nothing was found, what did I expect from them? He was referring me to gastroenterology as, yet again, I was told that all my issues were bowel related and probably IBS. I’d found out about adenomyosis online and done some research, so asked if I didn’t have endo, could it be that? To my amazement he said: “Yes, it’s very likely adenomyosis.” I asked about my options to treat that. “You have a coil, that is by far the best treatment for adenomyosis,” I was told. (Insert the sound of a *wrong buzzer* here, reader – unlike endometriosis, adenomyosis can actually be cured by a hysterectomy!)

I explained I was concerned about my coil because I couldn’t feel the threads and, against my better judgement, asked for him to examine me. I was subjected to the most brutal, agonising and quite frankly violating internal examination I’ve ever experienced. I sobbed all the way through it as he insincerely apologised. He couldn’t find the threads either, so I was also referred for yet another internal ultrasound scan, which only confirmed my coil was still in place, but – as is so often the case – showed none of the endometriosis or adenomyosis that was ravaging my body.

Towards the end of my NHS gynae journey, I came across Fair Treatment for the Women of Wales (FTWW), the only patient-led third sector organisation in Wales dedicated solely to women’s health equality. Through FTWW and their amazing support group on Facebook, I learned that sadly my experiences weren’t rare, and that I could pay privately to see a specialist, just 10 miles away in Cardiff. If it wasn’t for them, my suicidal thoughts may well have graduated to action. FTWW saved me from that, and I will be eternally grateful to them.

I will never forget my first consultation with my specialist. I was (and still am, if I’m honest) deeply traumatised following my last general gynae appointment, so I went in so ready for a fight, terrified that I’d be fobbed off yet again and that I really would have nowhere else to turn. It couldn’t have been more different; he was so kind, asked me questions and listened intently to my answers, and examined me with great care alongside a lovely nurse, with my partner in the room chatting to me too. My NHS notes were useless in assisting him; there was no mention of suspected adenomyosis (or anything, really), and the photos from my laparoscopy were black and white thumbnail photocopies. By the time I had my surgery with the specialist in 2018 (he offered to add me to his NHS list but my partner and I decided to pay for it), I had extensive stage 4 endometriosis. I was finally vindicated.

In 2019, just over a year after my first surgery, I was also diagnosed with M.E and fibromyalgia. You wait years for one diagnosis, then three turn up all at once… again, not without struggle. One GP I’d seen about my M.E and fibro symptoms told me I was very stressed and to clench and unclench my fists repeatedly. As I stared at her with my jaw on the floor, unable to believe what I was hearing, she repeated herself and insisted I tried it there, in front of her. “Better?” she barked. “No…” I replied, still in shock. I left her office and changed my GP, which eventually led to my additional diagnoses.

Around this time, my endometriosis symptoms announced their reunion tour, with multiple appearances at my bowels, bladder, uterus, head and legs – only this time it was so much worse than before. I had three months of Prostap injections* alongside HRT, which made me feel a whole lot worse – but it did help my specialist and I agree that it was very likely adenomyosis causing the lion’s share of my symptoms, and a total hysterectomy was the best course of treatment for this.

I consider myself very lucky when it comes to making that decision; I’ve never wanted children of my own. Evicting my uterus is something I asked about multiple times during my quest for diagnosis, but it was never entertained; I might want children in the future, I was too young to go through menopause, did we mention you might want children in the future… you get where they were going with it. I couldn’t believe the difference when seeing my specialist:

“Is fertility important to you?” he asked.

“No,” I replied without hesitating, “Dan has a daughter who is absolutely ace, but I’ve never wanted any children of my own.”

“Ok great, that’s one less thing for us to worry about then!” And that, as they say, was that.

I had a vaginal-assisted hysterectomy (VAH) and second excision on 20 February this year. At this stage I want to clarify that a total hysterectomy is the removal of the uterus and cervix, and does NOT mean removing the ovaries. Removal of the ovaries is called an oophorectomy. So many endo and adeno patients don’t know the difference, and it’s vital we do to ensure we make informed decisions. If your gynae doesn’t know the difference, please demand to see someone who does. VAH has a much lower risk of early menopause, and tends to offer a quicker/simpler recovery.

My specialist had described the procedure to me beforehand, and it sounded quite straightforward. My coil would be removed and, during keyhole surgery, an incision would be made at the top of my vagina. My uterus and cervix would then be removed through it, before the vagina was stitched up, and any endometriosis that had developed would be excised. As it happened, it was far more complicated.

My coil had been absorbed by the adenomyoisis in my uterus, meaning that the specialist had to basically cut my womb in half to free it. No wonder we couldn’t find my threads. No wonder I’d been in so much pain. I had endometriosis and scar tissue filling my pelvic cavity, sticking my uterus to my bladder and bowel and infiltrating them both. To quote Spike Milligan, I told you I was ill!

As I was coming around in recovery, I heard a nurse say: “We need to take special care with this one, she has M.E.” It was such a simple act of kindness, but I get so emotional every time I think about it.

All of the endometriosis was removed and, thanks also to some online pelvic physio sessions with the wonderful Jilly Bond, I have been symptom-free since.

I’m pleased that there has been much-needed discussion about endometriosis in the UK and Welsh parliaments, but there is still so much more that needs to be done. In Wales we have just three endometriosis specialists, and the waiting list to see them is expected to creep into years due to the impact of Covid-19 on ‘non-essential’ appointments and surgeries.

If endometriosis is poorly understood, adenomyosis has it so much worse; at least 1 in 10 people born female have adenomyosis – just like endo – but adenomyosis doesn’t even have a page on the NHS website. The information about endometriosis on the NHS website is wrong (endometriosis is NOT the lining of the uterus, which is why a hysterectomy will not cure it). I once explained to a colleague that endo and adeno were described by many as evil twin sisters, and so many patients have both. “Does that make you Cinderella?” she asked. We laughed, but there must be millions of Cinderellas out there.

In the UK all party parliamentary group for endometriosis, Nadine Dorries, the Government’s Minister for Women’s Health, stated that it was partly patients’ fault that the state of awareness, diagnosis and care is so appallingly bad. Despite her own appallingly bad form as an MP, her comments were still abhorrent and shocking. I’d love to know what else I could have done during my 23-year battle to be diagnosed.

Menstrual health education is woefully lacking throughout society; from schools and families to workplaces and healthcare. Serious questions need to be asked (and answered) about why so many general gynaecologists have barely any training or knowledge about conditions like endo and adeno.

In England and Scotland, compulsory menstrual health education is being added to the curriculum, but in Wales it remains optional. This is not good enough, and will result in future generations believing the harmful myths around these common illnesses that are so much more than “just a bad period”.

My M.E has been worse since surgery; that, alongside my experiences, has pushed me to leave my job and follow my dreams to study an MA in Creative Writing. I’ve often joked I could write a book about what I’ve been through. Perhaps I should?

*Prostap is a GNRH analogue (Gonadotrophin-releasing hormone antagonists) drug that is regularly prescribed to patients experiencing gynaecological issues. It’s an incredibly controversial ‘treatment’ and should be researched thoroughly by every patient. Search your online support groups for existing conversations, ask questions, and know you have a right to refuse it if you choose to – your treatment path should not be stalled as a result.

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