Rey's Endometriosis Story
“So, you want me to get pregnant so I will stop bleeding for nine months and then we have this child in the world? The fact that this is still a recommendation is ludicrous to me and it is one of the most insensitive things to say. ”
Like so many of us, Rey went on the pill in her mid-teens (16) – due to becoming sexually active, and her sensible parents wanted to take a belts and braces approach, trying to keep her safe - or as safe as any teenager who has discovered their independence can be.
Experiencing very painful periods
Despite being on the pill, Rey suffered from very painful periods, sometimes so bad that she would almost pass out. But the pill still masked just how bad it truly was, and when she, in her early twenties did come off the contraceptive ‘for a hot minute’, the pain was so unbearable that Rey decided to go straight back on it.
Some years later, in her mid-twenties, Rey decided to come off the hormonal contraceptive for good. She had too many physical side effects when taking the pill and her mental health seemed to be affected too, despite trying all sorts of different options.
The pain she was now experiencing was horrible, but without anyone around her talking about what their periods were like, and having been told, from the very beginning of puberty that: ‘period pain is normal - and here’s a tampon, here’s a pad, this is going to happen every month and it is going to suck. Have fun!’ Rey didn’t think that she had any other option than to just keep on living life as best she could, with a trusty supply of painkillers to get her through the days.
In her mid-thirties Rey found herself starting to miss work due to period and ovulation pain and she decided to start tracking her symptoms and monitoring her pain more closely - and found herself going to A&E convinced that she had appendicitis or gallstones. She got tested for everything the doctors there could think of, but with all the tests and scans coming back clear, she eventually got sent home with a prescription for pain relief, and as confused as ever.
Learning from Period Power
‘Over the years I’ve gone to GPs during endometriosis flare-ups, not knowing that was what it was. It’s been suggested that I have IBS or sciatica but nothing ever really clicked. [Because the symptoms can be so varied and random] You don’t automatically think everything is linked to your cycle.’ Desperate for some answers Rey decided to do some digging on her own, and when she came across the book Period Power by Maisie Hill things started to make a bit more sense. This led to further research and when Rey one day read the descriptions of endometriosis, the ball dropped. ‘I thought: ‘Shit, I think this is what I have.’’ She started seeking out online endometriosis communities, trying to learn as much as she possibly could, before reaching out to her GP. As Rey describes it, she has a healthy ability to question people in white coats, so when she turned up at her GP's office, she came prepared with a tonne of information.
‘Thankfully my GP listened, and agreed, that it could be endometriosis, but she did want to run other tests just to rule out fibroids and PCOS.’
“You should consider getting pregnant”
The tests, including ultrasound, came back clear and Rey went back to her GP’s surgery to talk about the next steps, although this time, she was seen by a different doctor.
‘My aim was to push for surgery, by a specialist, to diagnose endometriosis [In the region where Rey lives, in Scotland, patients can request being referred to a specifically named specialist] and I told him: ‘I am sure this is what I’ve got and I want to go to this specific clinic.’ He then proceeded to tell me that surgery is really dangerous as it could damage your bladder and that: ‘You should consider getting pregnant instead because that will clear you of your symptoms.’’
‘I was gobsmacked. First of all, he didn’t know if I’d been trying to get pregnant or if I’d had multiple miscarriages. Also, pregnancy is famously not a cure for endometriosis. So, you want me to get pregnant so I will stop bleeding for nine months and then we have this child in the world? The fact that this is still a recommendation is ludicrous to me and it is one of the most insensitive things to say. He then went on to list the benefits of hormonal contraception and I just sat there and nodded - and said ‘yes that’s good, but I want my referral to this surgeon - not to the local hospital, where I will get an ablation procedure by a general gynaecologist. I want the referral to a specialist who is skilled in excision.’
Getting surgery
Rey eventually got her referral, and then waited 6-8 months for the phone call with the specialist, who when Rey described her symptoms to her, agreed that it sounded a lot like endometriosis: ‘But definitive diagnosis is only possible via laparoscopic surgery and if found we excise what we find.” Rey went on the waitlist, and two years later she got a phone call. She was having surgery. In seven days.
On the day of the surgery, Rey went to the hospital: ‘They kept recommending I have the coil inserted during the procedure - but I refused: ‘diagnosis first, then we can discuss treatment, that’s the order it should be’.
When she woke up from surgery, the first thing she did was ask if they’d found something, and when she was told that they had indeed found endometriosis she burst into tears with relief: ‘it wasn’t all in my head.’ She attempted to record the conversation she had with the doctor who read her the surgery notes, as she knew that would come in handy later, but the painkiller haze she was in, meant she couldn’t operate her phone properly. She did however manage to request a copy of the notes and ask for pictures. In her notes, it was noted that she had an enlarged uterus and that it was suspected that she had adenomyosis. Rey was shocked. She’s never had what is classed as a very heavy period, one of the sure tell signs that you have adenomyosis, so she’d always ruled that out as a possibility. Later when Rey decided to research the other signs of adenomyosis she had a ding, ding, ding moment - turns out you shouldn’t rule out anything just because you don’t have the most common sign - everything else on the symptom list checked out.
Rey stayed in hospital overnight and, barely able to walk, waddled out of the hospital the next day to her partner, who was waiting in the car park (Rey’s surgery had taken place whilst Covid restrictions meant she had to attend hospital alone) armed with nothing but painkillers, and inconsistent information about how to take care of her wounds and what to do if complications arose.
‘I knew that this wasn’t the endpoint and that with endo you are never done, but at least I now had some answers and I could run with that. Following the surgery my symptoms haven't really gotten better actually, it has all gotten a bit worse, but I am not sure why. It’s not been a good time and I’ve just been doing loads more digging trying to figure out what to do next.’
These days Rey is a staunch advocate for a complete overhaul of how endometriosis is treated in the UK - and as supportive and informative as she has found various communities online, she also believes that there are differing opinions and motivations at play for some and for Rey it’s been tough to witness a community that she believes should be fighting alongside each other to ensure the best possible care for all those affected by endometriosis, getting wrapped up in fighting each other instead. This is also what led Rey to start her account @Reythewarrior to share what she’s learned on her journey about best practice care for people with endometriosis.
Rey’s advice for people who suspect they have endometriosis
When asked what Rey would recommend to people who suspect they have endometriosis:
‘Do as much research as possible. Write down questions before you go and see your GP or gynaecologist. Being prepared, means you ensure you get everything you can get out of that appointment. If you can’t take someone with you, either ask to record the conversation or call someone whilst in the room and have them on speaker so there are more sets of ears. If you’re asking for a referral and they refuse, ask them to document it in your notes, and if they say anything that doesn't make sense ask them to repeat it.’
‘Knowledge is so important and you need to have the confidence to ask the tough questions. But remember, the GP won’t know everything - and it is you who is the expert on your own body. You have lived in your body your entire life. Track all of your symptoms. Even things you might not think are related because it helps the medical professionals to understand where to look.’
’If you do go and have surgery at your local hospital with a general gynae who is not 100% focused on endo care and highly skilled in excision (the gold standard technique), it’s worth considering asking them to not do anything if they find endometriosis present. Just go in there, diagnose and then make a plan. This will give you the best chance to get the best care down the line with fewer complications. Particularly if you have bowel and other organs involved. A multidisciplinary approach is important. As always, do your research and make an informed decision that you feel is best for you. And finally, never be afraid of seeking a second opinion.’
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