In September 2022, I had a vaginal bleed. I had been on hormone replacement therapy (HRT) for 10 years following an early menopause and had no problems with bleeding or side effects. I was due to go on a USA road trip the following week and I was fleetingly tempted to delay any concern until after my holiday. However, having been trained as a therapeutic radiographer with a continued career in health, and ironically some time in gynaecology, I knew I should have it looked into. 

I sent the online form off to the GP that morning to request an urgent appointment and they came back with an appointment that day. I saw a lovely registrar GP who immediately told me to come off the HRT and said she would contact her ‘gynae group’ to get advice about next steps and call me that evening.  

She called late and advised me to come in the next day for an examination. I wasn’t overly concerned as had never had any gynaecological problems. I was very pleased that the GP was being so thorough. In the back of my mind, I was more concerned about whether the bleeding would continue during my holiday! She referred me for an initial ultrasound to determine what was causing the bleeding.  

Thankfully my bleeding stopped, and I enjoyed my holiday without too much concern. I assumed that perhaps, as discussed with the GP, it was time to come off HRT and that maybe I had some hyperplasia (overgrowth of womb lining) or a fibroid/polyp.   

After the ultrasound, I was disappointed to be told that it looked like there was a possible fibroid and/or polyp and that I would have to be referred to the local gynaecology department following the two week rule. But I was still not overly concerned due to my lack of gynaecology history.

The consultant who dealt with me was quite brusque. Even though she was thorough in her questioning and efficient, I remember thinking that she would be quite intimidating to someone with no knowledge of these procedures. After performing a womb sampling, she informed me that I would have to come back for an outpatient hysteroscopy and removal of the polyp/fibroid. A week later, after a couple of initial painful tries to insert the hysteroscopy probe, she used local anaesthetic and proceeded with the MyoSure (a hysteroscopic treatment that removes womb tissue) to remove the fibroid/polyp. After this, she said that the fibroid/polyp had been removed and that I would need to speak to my GP regarding continuation of HRT. After she said she would call in a couple of weeks with the results, we said goodbye. 

Two weeks later whilst I was working from home and recovering from a planned foot operation, I was considering ringing the gynae department as hadn’t heard anything right as my mobile rang with a ‘No Caller ID’ number. I answered it with some anxiety hoping it was the consultant with the results. Instead, I heard a voice saying, “We need to book you a CT appointment for tomorrow”. My mind immediately went into overdrive. Despite trying to calm my anxiety with maybe they are doing a “belt and braces”, I knew that this wasn’t good news.  After quizzing the poor receptionist who had the misfortune to call me, I rang every gynae secretary on my appointment letter until a very lovely lady anxiously said she would try to get someone to call me. By this point I really didn’t care who told me what the results were, I just wanted to know. When a doctor rang me back, they were exceptionally unhelpful and unsympathetically said “If I were you, I would just go for the scan”!   

Whilst in for my CT scan, my husband inadvertently went to the MRI scanner and found out that I had an appointment for an MRI on Sunday. I looked at him in horror as I hadn’t been told about this. He hastily said that maybe the receptionist had got it wrong because she couldn’t understand my name. Although in the back of my mind I wasn’t convinced I thought maybe: the things you do to avoid facing things!  

Saturday morning comes and, on the mat lands an appointment for the MRI the following Sunday. I was both furious and super anxious and again rang the gynae department where now a rather panicked secretary said she would have to speak to a doctor. I stressed my background and that I didn’t need to be brought in to be told my results, I just wanted to know. But I was told I had to come in, so they arranged for me to attend the gynae follow-up clinic.   

A very kind registrar, totally put on the spot to explain my results at the end of his surgery, comforted me rather gallantly after sharing what by then I knew wouldn’t be good news. I had been diagnosed with a rare endometrial stromal sarcoma.  

In the light of my constant phoning and anxious demands as to what was going on, the MRI was subsequently brought forward and went to the MDT that Friday. The Clinical Nurse Specialist nurse rang to confirm the diagnosis and that I had been recommended for robotic hysterectomy as this is the first line treatment. I was horrified at the prospect as I know that many women can have problems after a hysterectomy. Having not had any gynaecology problems, I was totally shocked as this was the last thing I had ever expected, but felt lucky as I’ve already had my children.   

Thankfully due to my husband’s healthcare insurance, I had a robotic hysterectomy less than a month after diagnosis, so an anxious wait for surgery was minimised. My consultant gynae-oncologist was kind and patient in his explanations and care. Being a very active person, I was extremely anxious about the side effects of the hysterectomy and how long I wouldn’t be able to do things and what I wouldn’t be able to do.  

The pathology was confirmed as thankfully a low grade endometrial stromal sarcoma with positive oestrogen receptors (an indication for this tumour) which was confined to the womb, albeit the stage increased to 1b due to lymphatic invasion in the myometrium (muscular outer layer of the womb). I could let out some breath at last. I subsequently was referred to the Royal Marsden sarcoma department due to the rarity of the sarcoma where I will be on surveillance, hopefully remaining as so for 10 years, initially for 3 monthly scans.  

Due to its rarity and the lack of adjuvant treatment (a secondary treatment used after primary treatment to reduce the risk of cancer returning), there is no standard treatment for this tumour. I have joined a Facebook group dedicated to this type of womb cancer, which offers support to those who have been diagnosed and gives me hope if things should progress (hopefully not) that I will be aware of other possible treatments available. Being part of this worldwide group, I am also extremely thankful that I live in the UK where I have amazing hospital facilities, follow-up, and access to advice and treatment is so readily available. 

I can only say how glad I am that I did not ignore the signs. I consider myself extremely fortunate in the prompt action and diligence of my GP and despite the anxiety caused I am thankful that the gynae department at the hospital contacted me immediately when hysteroscopy results were available. My surgeon was so kind, reassuring and encouraging about the surgery and following his excellent surgery I have returned to almost all my previous exercise and fitness regime – I’m still a little hesitant to start proper running again but it’s a good excuse not to be roped into a half-marathon/marathon! 

As with many of these stories my advice would be: Don’t ignore your symptoms and don’t sit back and wait for that appointment or results if you’re not happy with what’s going on. We are own best advocates and instinctively know when something needs to be followed up. However much it may be frightening or not convenient, it’s important not to ignore that ‘niggle”.