In the spring edition magazine I announced that I was recovering from surgery where I was diagnosed with endometriosis. Endometriosis affects 10% of women and takes an average of 10 years to diagnose. Using my platform to support and signpost women on their health journeys, I feel it is vital to share my story in the hope it provides answers for others struggling in silence.
It’s taken 24 years for my diagnosis
A common question I have had since my diagnosis is how long I’ve had my symptoms.
It’s been a long journey and one that is, when I reflect on it, really quite vast to comprehend. Reflecting on those 24 years reveals a complex but necessary story to tell.
My periods have never been a joy, despite eagerly anticipating this phase of womanhood. I can’t tell you when they started, but I can tell you that from the age of 14, they were pretty unbearable. I’d frequently be off school around my period, writhing in a darkened room pleading for my womb to be taken away.
Initially, my GP was reluctant to put someone so young on contraceptives, but eventually recognised there were limited options to help me manage my symptoms, and we’d tried various pain medications to no avail. We started with the Microgynon (combined pill), but this gave me excruciating headaches. After a little trial and error, I was prescribed Cilest (another combined pill) and then eventually Evra (a combined contraceptive patch) as I struggled to take a tablet daily.
The contraceptive patch, which was changed once a week, made a significant difference to my quality of life. My periods were no longer painful and they were significantly lighter, and shorter too. But in 2017, I suffered an aura migraine which stopped my use of this contraceptive as it increases the risk of stroke – I can’t use any combined hormone treatment for this reason (specifically, any hormone that includes oestrogen).
As I perceived my symptoms had eased, and I had bad experiences with progesterone only contraceptives, I decided not to take anything for a few years. But as my pain increased, my flow became heavier, and my pain relief options narrowed (I am unable to take ibuprofen and was reliant on a cocktail of paracetamol and ibuprofen every 2 hours to function), I trialed progesterone only options. However, on trying the pill, it made the flow even heavier and pain more severe. So I just persevered. But, the symptoms were progressively getting worse over months and years.
Trips to the gynaecologist
Since my first period, I was referred on numerous occasions to gynaecology but scans would always come back as ‘normal’ aside from a dermoid cyst within my right ovary. As these rarely proved problematic and it seemingly never changed, I was always discharged with no further action or concern.
But in addition to painful periods, painful sex was a defining symptom. It’s difficult to recall the series of events, but I was referred to psychosexual counseling, with the problem of sexual dysfunction perceived as psychological. Around the same time, my physiotherapist recommended seeing a pelvic health physiotherapist to see if they could help.
With no improvement in my symptoms, the pelvic physio recommended seeking an appointment with a well-regarded consultant at the Sexual Health Clinic who specialised in women’s health. In early 2019, I met with him where he patiently reviewed my entire history and conducted a pelvic exam. During this, and my noticable discomfort, he commented that my uterus was not mobile and advised that it was very likely that I had endometriosis which was fixing my uterus in a retroverted position*. This, he speculated, was the likely cause of the painful sex in addition to painful periods (smear tests were also becoming more uncomfortable). He referred me onto the gynaecology team to review my case and investigate endometriosis.
The most amazing thing about this experience was that I was able to make an appointment with him directly at the Sexual Health Clinic, without a referral from my GP.
‘Suspected’ endometriosis
Armed with a little more information, I was sent for further scans to provide a comprehensive overview of my reproductive organs; this included a transvaginal scan and MRI. Although it indicated that it was likely the right fallopian tube was blocked, these scans did not show anything that was obviously concerning. However, I was advised that MRIs really only show deep infiltrating endometriosis – where it resides within tissues and organs (transvaginal scans, unless conducted by an endometriosis specialist, don’t show endometriosis at all I’ve learned).
Following these tests, the next option was laparoscopy surgery – the gold standard and the only way to conclusively diagnose endometriosis. I was advised that just because it didn’t show on the scan, it didn’t mean I didn’t have it. But I was unsure if I wanted to go to this extreme just for a diagnosis. Equipped with information about the procedure, I was told to think about it.
At the time, I decided against the surgery. There were numerous factors at play in this decision: I felt there wasn’t enough evidence to warrant the surgery – if I did have endometriosis, I perceived this wouldn’t be ‘deep’ as it didn’t show on the MRI, which I took to be a good sign; also, it was recommended I’d have a coil inserted at the time of surgery to alleviate the symptoms around my period which may not be tolerated whilst awake. However, as I hadn’t made a conclusive decision about child bearing it wasn’t something I wanted to commit to. Overall, it didn’t feel like the right course of action, especially as I was assured for so long everything was ‘normal’ and I’d been ‘managing’ the symptoms for all these years.
Progressive symptoms
In the years that followed, my symptoms became progressively worse. I even struggled to sit when on my period because the pain would be so severe; I would have fainting spells, night sweats, heavy periods, cramps that would spread all down my legs and up my back that were so severe that I would have to crouch on the floor when my womb was contracting (embarrassing when I was out and about), and painkillers would have no effect.
It was an odd series of events that led me to surgery and ultimately my diagnosis. During and following my honeymoon in May 2022, I had a marked increase in acid reflux symptoms. The doctors organised a couple of tests, including a transvaginal scan because apparently the ovaries can influence acid production. At this scan, we found that my dermoid cyst had grown by 1cm and that I should be referred onto gynaecology once again.
Diagnosing endometriosis
It took 11 months to be seen by the gynaecology team and during that wait, I was, probably for the first time, paying more attention to the symptoms I was experiencing.
In addition to all of the above, which were getting worse, I was also becoming quite ashen around my period, and I was really struggling to get around. Not only was I getting marked pain and difficulty when on my period, but I was getting noticeable symptoms and patterns around ovulation too. This would include a flare in my acid reflux that builds around both my period and ovulation, but also full body pain and muscle spasms.
When I met with my gynaecologist, we once again reviewed my history and discussed the reasons I didn’t go through the surgery before. I stressed my concerns that it would be a big waste of time and she assured me that from what I was experiencing alone it was worth it – and of course a diagnostic laparoscopy is exactly that, to look and see.
I elected for the surgery, on the condition that we removed the cyst and performed a hydrotubation test, a procedure using dye to check the function of my fallopian tubes. For me, I felt this would justify the surgery, as I couldn’t fathom it being anything else and certainly not endometriosis. The added bonus was that the cyst was causing some of these symptoms and discomfort. Although it came with the risk I’d lose my ovary, having justification for the surgery made it feel worth it (I didn’t lose my ovary thankfully, the removal went smoothly in that respect).
In what felt like a whirlwind, I had my surgery less than 4 months after this first meeting (though they were keen to see me much sooner, I was marked as a priority and first offered the surgery just 4 weeks after this appointment). Upon waking, my consultant delivered the news: I had endometriosis.
As predicted by the consultant 4 years earlier, endometriosis had been found within my USL (uterosacral ligaments), attached to my uterus, and it was fusing my uterus in the retroverted position*. This was deep infiltrating endometriosis. Additionally, there were adhesions found around my small bowel, appendix and abdominal wall, joining them together. I also found out that both fallopian tubes are blocked, meaning natural conception would never be possible for me. Pointedly, aside the right tube showing a blockage, none of this was picked up in imaging.
Endometriosis service
I was referred to the endometriosis specialist team to discuss managing this condition moving forward. If I wanted to explore my fertility, I would need to see fertility specialists.
Having had my first appointment with a nurse who specialises in endometriosis recently, we can’t conclusively deduce if it was endometriosis found on my bowel as samples could not be collected and sent to histology for confirmation. This is because the surgery was performed by a gynaecologist and would require a gastroenterologist surgeon to remove the adhesions. However, the gynaecologist was able to ‘free’ the organs during the procedure. Also, we can’t conclusively say if this is what is causing my acid symptoms – which recently resumed with my third period following surgery. However, hormone therapy may indicate if this, for me, is a contributor. I’ll certainly be monitoring the symptoms more closely going forward. I’ve also been referred to the pain clinic to help me manage the pain associated with my periods. There is also a chance I’ll need more surgery in the future.
My first two periods following my surgery were much improved. The pain was significantly reduced and they were not as heavy. However, my third was more painful, though still not as severe as it was pre-surgery, but it was also heavier with clots (another symptom pre-surgery). I am likely in an adjustment phase and of course, we’re now looking at ways in which we can manage this and keep on top of it in the future, with hormone therapy and pain management the two main and best courses for keeping the symptoms at bay. There are more severe surgeries and treatments, including medical menopause to alleviate the symtoms for a time, but for now, as before, I’ll be trying different strategies to manage it. Interestingly, the pill recommened (progesterone only), Dienogest, is new to the market (launched 1 year ago) that is specific for treating endometriosis – although its worth noting it’s not authorised as a contraceptive, but it will likely stop my period.
The journey doesn’t stop here of course. We need to get to a stage where I can manage the condition until my periods stop. Even if we assume they did manage to cut out all of the endometrosis found, I am at a higher risk of it coming back so it’s best to try and get on top of it.
Reflecting on the journey
Do I wish I had the surgery when first offered? I guess, it had to be the right time. Yes I’d suffered a lot over many years – and I haven’t even gone through all the bowel pain and IBS flares; I can recall all of that right side abdominal pain when I was 19 years old, appendicitis was even mentioned, and other episodes that hospitalised me, which I’ve since realised I was on my period. But electing for a surgery wasn’t clear cut. When I was younger, endometriosis wasn’t talked about. It was never suggested once. And as bowel dysfunction and painful periods, even painful sex were all treated as independent and separate issues, and often not properly investigated, I ended up believing the narrative that this was ‘my normal’.
It is a condition more widely talked about now but there is still a long way to go in terms of training, identifying, supporting, treating and managing endometriosis, although I do feel more promise for those who come after me.
I’ve learned you do have to advocate for yourself, but we do need that encouragement and push from our family, health practitioners and specialists to get diagnosed and the right course of treatment – who knows how different things would have been if it had been picked up earlier (was it the cause of my infertility, could I have prevented IBS or lessened some of the severe symptoms I experienced?). At the end of the day, although periods can be painful, if your period is impacting on your day to day life, you do need this to be investigated.
*A women’s uterus can be retroverted and this is considered a normal position. However, a uterus should be mobile and able to move backwards and forwards.
Featured image credit: Chris Kingsbury. This was my birthday last year and my period was super painful, painkillers hadn’t set in yet but I was determined to not let it ruin the day. So I went to my favourite place for an hour. In some photos, I am clearly grimacing but trying to make memories.
