Hi, I'm really scared and just wanted to see if anyone has had any similar experiences. I'm 47 and been on the mini pill and virtually period free for 5 years. In early December I started bleeding and it got so heavy I couldn't leave the house and had to go sick at work. I was using maternity pads and changing every hour and also sleeping on a towel. I started to lose blood clots which got progressively bigger, but what concerned me more were pieces of what I can only describe as tissue the size of a small finger. It would pass out when I sat on the toilet. I finally booked an appointment in mid January through my private healthcare provider as I am lucky to have that through my work. I was still bleeding heavily at this point. I wondered if it was caused by menopause although I am ready taking HRT. I took photos of the tissue I was passing but my consultant has not really commented. I'm not in pain but uncomfortable and 'full', especially when I cough.
I was immediately put on on tranexamic acid and northistrone 3 times a day which stopped the bleeding and sent for an ultrasound. This showed 3 smallish fibroids but of more concern is my endometrial lining which is 47mm (likely adenomyosis) and my consultant seems concerned about this. My mother had stage 3 uterus cancer when she was 60 and a radical hysterectomy.
The plan is for me to have a hysteroscopy this week and a biopsy. I stupidly never thought it could be cancer, just fibroids, but my consultant says he is not so worried about those. A hysterectomy is planned as I cannot stay on northiestrone indefinitely and am not suitable for an IUD. Right now I am freaking about the hysteroscopy, as I have researched and I know it can be very painful. No pain relief has been offered.The trouble is all that is on Google mainly are horror stories which add to my anxiety.
But my bigger worry is what is going on. I've been feeling super run down for weeks and just now recovering from a cold I got at Christmas that turned into a chest infection. On top of that my dog died unexpectedly last week and I had had her for 15 years. The grief is making me feel awful and I'm trying to stay calm but really struggling.
I rang my healthcare provider to see if they would pay for my planned hysterectomy and they were a bit on the fence if not cancer, citing that it might be deemed a chronic condition and not acute and therefore not covered, and I needed to try 'alternatives' first. My consultant has said I definitely need treatment and if they won't pay he would treat me under the NHS, so I know I am fortunate. Sorry for the off-load, I just want to know if anyone else has had similar symptoms as I can't seem to find out if my 47mm thickness and tissue passing is likely to be symptomatic of cancer. I just want to prepare myself.
Hi Sparky
I am so sorry that you experienced this.
I completely understand your anxiety about the hysteroscopy.
Do you feel able to mention this to one of the nurses? Or email if that is easier. Under the circumstances they may decide that a GA would be appropriate but at the very least having them aware and able to offer extra support on Friday. You need not go into any details if you do not want to but a brief outline would help them best support you. If you prefer to do it in person then you could ask to see one of the nurses before you have the appointment, or even write it down on paper and take with you. Through my experiences with my own nurses- I know that they would want to know so they can really look after you.
I understand your worry about stirrups and feeling out of control and also worried that they would not stop.
There were no stirrups at my hospital. There was a couch with separate support for your legs. A bit like a reclining chair. Mine was performed by a nurse specialist and I had another nurse at my head end who explained it all. I felt it was under my control at all times. They reassured me that they would stop at any point that I wanted to.
I understand that this has bought up lots of difficult emotions for you and if you need to talk it through with someone neutral then do remember the Support Line is there.
Jane
Okay. I'm back from my out patient hysteroscopy. It wasn't anywhere near as bad as I had expected or had read about via Dr Google. I really wish though there was more official information as I was given a leaflet that was only 4 paragraphs and didn't answer all my questions. I am being treated in a private hospital. There was for example, nothing to say to arrive with a full bladder in the leaflet I was given, so didn't but then needed to provide a sample! It all added to my stress. That and them being 30 mins late for my appointment, which meant sitting around for nearly an hour.
I was asked to remove my dress. I purposely wore a dress that I could roll up but was told I had to wear a gown as 'things can get messy'. Honestly, no wonder people can get so scared when they talk like this.
I had absolutely no pain relief and my consultant said he doesn't use it as it often causes more pain administering it than the patient would otherwise experience. So I had to trust him on that. But then I got into the room the nurse asked me what anaesthetic I was having?! I explained I had already been told I couldn't have any, and she just went, 'oh okay. I don't work with Mr xxx much'. Stress levels continue to elevate! There is no gas and air option anyway.
I explained I was super nervous, and then she said she'd get a second nurse in, to chat to me. So it is not standard at this hospital to have 2 nurses as others seem to experience.
Anyway, for me, it did not hurt much at all. So I am one of the majority, lucky ones I guess. I didn't even feel the cervix part, he just told me he was in the womb and about to take the biopsy! That was a bit painful, but bearable. So maybe he was right after all regards pain relief. Anyway it worked for me.
He was transparent as I asked him to be and said I have very thick lining, multiple polyps and there was an area he said he didn't like the look of. Average of 2 weeks wait for the results but he has marked it as urgent. Either way he has recommended a hysterectomy as I don't want an IUD due to bad experience in the past.
Thank you all for your kind words and advice in reassuring me. It was good to find a source of reliable and trust-worthy information.
Well done! Proud of you.
Hopefully you can now relax for a couple of days and are not too uncomfortable.
Fingers crossed results come quickly. In the meantime ,we are here if you need us
Jane
Instead of having a hysteroscopy I paid for the new WID-easy test which is now available privately. It is non invasive and completely painless. It's like a pcr test which picks up fragments of cancer dna. Mine came back in 7 days showing that I have tested positive for cancer.
Since then I've had a pipelle biopsy which I'm waiting for the results.
I travelled a couple of hours to Somerset for the test.
I read the published paper on the trial that was conducted, and it was more accurate than the hysteroscopy.
I paid £580 for the visit and test.
I'm not sure what I can post here because I don't want to violate any rules.
Although it showed there is cancer, I then needed to have a biopsy to see what type, grace, etc. I'm waiting for those results now. That's through the NHS
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