Hi All,
I am reaching out on here for support and to hopefully connect with others who are finding themselves in the same position as me, or previously have.
I found out 2 days ago that I have severe complex pre-cancer (endometrial hyperplasia with aytapia) and it has come back there is also a possible cancer already present.
I have been visiting my doctors for many years due to suffering with irregular periods. I have had investigations done in the past which included ultrasounds, blood tests and I was referred to a fertility gynaecologist a few years ago due to our desire to start a family.
The tests carried out then did not show any reason for the irregular prolonged cycle and I was advised there was no concern and menorrhagia was advised which is unexplained prolonged menstrual cycle.
However, in the couple of years that followed the bleeding got significantly worse. I went back to the doctors and explained this and I was referred to have another ultrasound.
I had an internal and external ultrasound on an urgent referral due to the non-stop bleeding and this came back as a thickened endometrium lining of 24mm which they advised was far too thick. They told me they would refer this scan report to gynaecologists in my local hospital and they would make a decision on what would happen next. I was also diagnosed at this point with PCOS by my doctor.
Due to my age at this point my doctor advised that the risk of this being cancerous was very low and therefore gynaecology placed me under their non-benign referral process with the first available appointment in January the following year. A wait in total of 9 months from my scan.
In the meantime my bleeding worsened further. I would bleed for months on end, it became relentless. To the point that I revisited my doctor and they wrote an expodite letter to the gynaecology department of which they ignored.
Due to the time this all took I developed chronic anemia and this resulted in me becoming unwell. Despite taking prescribed iron tablets they were never effective enough due to the amount of blood loss.
I was trialled in this period before my gynaecologist consultation with metformin which made me unwell with symptoms and I was advised to come off them by my doctor.
The time came around for my gynaecologist consultation this January and it was here where I was told I needed a hysteroscopy and biopsy and that I would be placed on a six month waiting list. In the meantime they wanted me to take the contraceptive pill to stop the bleeding which I was reluctant to due to our wishes to conceive and having previous horrendous side effects from several of the contraceptive pills out there.
I began to consider the contraceptive pill at this stage however I received a phone call from my gynaecologists secretary who advised they had opened up a new list of surgeries and placed me on this for 3 weeks time.
Fast forward to the lead up week of my surgery where I was advised based off my pre-op blood results that I was at present too anaemic for surgery. Due to this I went into hospital and underwent an iron infusion a few days before my operation to increase my chances of being well enough.
On the day of the hysteroscopy and biopsy I had emergency bloods taken an hour before which confirmed I was ok for it to go ahead. I was releived and the procedure was done.
I was told afterwards that is had gone well and a lot of biopsies were taken and I would receive a letter from my gynaecologist with the result.
Fast forward to roughly 3 weeks later I received a call from the gynaecologist who carried out the procedure and she advised it was urgent and pre-cancerous cells had been found. She advised she could not tell me anything further but that she would refer me to another consultant.
Two days following this I received another call to advised I was to be seen by a gynaecologist who specialised in oncology in a weeks time.
That appointment was 2 days ago, where I found out the above diagnosis. Since this I have been referred for an urgent MRI due to the suspected possible cancer and I don’t know how to process this.
I was told I wasn’t a common case and in fact that this is very uncommon for someone in their early 30’s but because the pre cancerous cells are severe the approach is to perform a full hysterectomy.
I advised our hopes and dreams of conceiving and was told that they could try and fit a coil and try and prevent this condition getting any worst or forming into full invasive cancer but that the choice is mine and I have been given a week to think about it before a follow up appointment with them.
I feel this is a very difficult decision, especially when I don’t know the full facts of if there also the presence of invasive cancer.
I feel numb and broken and I am looking for support and to see if anyone else has gone through or is going through this.
I have a history or mental health and I advised the hospital this and was told that I did not have access to cancer services yet as it is not confirmed as full invasive cancer and at the moment we are awaiting further results.
Any advice, help or support is much appreciated.
If you’ve got this far, thank you for reading my story.
Hi Frankie
Welcome to the womb group.
I am so sorry that you have been through such a long journey so far and I can only imagine how challenging it must have been.
I am sorry to hear that some atypical hyperplasia has been found. Whilst this is a precancerous condition it is normally treated due to it potentially leading to endometrial cancer. Sometimes it can be found alongside some early cancerous changes in the endometrium. This is why treatment is normally advised. There are other types of hyperplasia where treatment may not be needed.
As they believe that there is possibly some cancer present- then an MRI and/or CT is normally the next step. They will be looking to see if anything present is confined to your womb and getting a general overall clearer picture.
Whilst a hysterectomy is the normal first line recommended treatment, there can occasionally be other options particularly in cases like yours- where fertility is involved.
This treatment is the mirena coil. For some ladies with pre cancer or very early stage and early grade cancer, it may be able to treat the condition. There have been ladies on here recently, who although older than yourself, have been successfully helped by the mirena. They had early stage and grade endometrial cancer. If you do decide it is an option then normally it involves continued monitoring and testing. The MRI results will give a much clearer picture.
Understandably your mental health will be affected by this all. It is really hard to be at the stage where you are at, where you do not yet have the full picture. There are many lovely ladies on here who will want to offer you support so please do reach out to us and ask any questions you may have.
We do have the Support Line that is available from 8am-8pm daily if you feel that talking things through would help.
I hope that your MRI can be done quickly and the results come back very soon. Hopefully then you will have more of an idea of what may lie ahead and be able to make the best decision for you. Until then, we are here for you.
Jane
