My Wife’s story to help others. (Fibroids)

[Rlr2020]

My Amazing Wife’s story

I just wanted to tell my story in the hope that it might help someone in a similar position.

I am 41 years old and I found a lump/ hardness in the lower, left hand side of my pelvis.

The lump would move lightly at different times of the day and sometimes I couldn’t feel it at all.

I was also experiencing bloating, heavy periods including clotting and slight lower back pain, something that I haven't suffered with before.

I was referred quickly for an Ultrasound scan and blood tests by my GP.

At the Ultrasound the Radiologist was unsure of the nature of the lump or it’s exact location and I was referred to my local hospital for further tests.

The lump was described as a complex pelvic mass which was approximately 5cm in size.

I was referred very quickly to a Gynaecologist Consultant who is also an Oncologist.

I was worried sick that this could be some form of cancer as although my CA125 levels and other blood tests were normal, nothing could be ruled out.

At my initial appointment the consultant said that the mass was complex and possibly a degenerating fibroid but couldn’t be sure at this stage.

He explained that Fibroids are generally benign growths from the Uterus and a small percentage can be cancerous (1 in 2300).

He arranged for me to have an MRI scan two weeks later.

I then went back to see my consultant for the results of the scan and he confirmed that this was in fact a Fibroid and would need to be removed.

An MDT meeting with different specialists looked at the MRI imaging and said that the images could represent Leiomysarcoma (rare form of cancer) or Sarcoma change to the Fibroid and advised extraction of this Lesion. It was very frightening to hear.

It is apparently impossible to diagnose this type of cancer unless there is a spread visible to another area of the body.

The only way it can be diagnosed is after surgery, when sent to histology for examination.

The consultant advised that for me the best course of action would be to have a hysterectomy, which was quite a shock as I felt quite young to be going through that kind of surgery.

However as my family is complete I agreed with this course of action as I was beside myself with worry. I just wanted what ever was to be removed from me and the best possible outcome.

He booked me in for surgery, 3 weeks later (through the fast track route).

I was pleased that it was being dealt with quickly on the one hand but being put on such a fast track to surgery raised my anxiety as they obviously felt there was real concern.

Although I was terrified I had a full hysterectomy. I had to have a vertical incision from my tummy button as I was comparable to 20 gestational weeks in size by the time of surgery.

Thankfully everything was straight forward.

They discovered several several Fibroids while in surgery, two of which were large. They also found sightings of Endometriosis.

I spent two nights in hospital and then I was able to go home. I was extremely bloated at first and experienced manageable pain.

I am now 3 weeks post surgery and I have just had my follow up appointment with my consultant.

My histology came back and there was no cancer present. I am so relieved.

I just want to reassure anyone that finds themselves in a similar, more complex situation with fibroids. Particularly when MRI scans are suggestive of malignancy, that it most likely will be ok.

I have so far had no menopausal symptoms at all and have been prescribed an Oestrogen patch just to maintain my levels until I’m 52.

I am feeling really well and recovering with a weight lifted off my shoulders.

If you find yourself in a similar situation and would like any support I would be happy to help. (UK based).

[Alaine1 Administrator]

Thank you for sharing your story. I’m so happy that a positive outcome came about. I hope your recovery is continuing to go to plan

[Vongi]

Hello, just came across this post. I am in a similar situation at the moment with fibroids. Full Hysterectomy has been suggested fast track in 2-4 weeks but I have opted to get 2nd opinion as I dnt have any symptoms, blood test and biopsy is clear. MRI scan is suggesting malignancy. Doc is 50/50 about this. I am not keen on the surgery and have reservations about complications afterwards. I have heard stories about bladder, bowel prolapse. Increase in frequency of urine and pressure and feeling of heaviness in the pelvic area. I m so so scared of having the surgery and think I m not going to come out alive. How was your recovery and did you have any complications afterwards.