Awaiting Hysteroscopy

Hello Mumof2legends

Welcome to the Womb group and the Online Community.

I am sorry to hear that you are experiencing bleeding and have an enlarged uterus and thickened lining.

I can totally understand why you are getting fed up. The continued bleeding must be getting you down. The wait for the hysteroscopy does seem a long time. Going on the cancellation list was a good idea.

When did you last have a GP consultation? I wonder in the circumstances it is worth going to see them again, particularly about the continued bleeding that has got worse. I wonder also about asking for routine blood tests to check for anaemia etc. 

I do not have experience of adenomyosis but I also wonder if it is worth asking about whether the mirena still is useful or whether it may be adding to/causing the bleeding. 

I would also ask whether it is possible to go on the urgent list for the hysteroscopy due to the length of time it has taken so far, the increased symptoms and the concern that these symptoms can (in some people) indicate cancer. I am not saying that I think this is a cancer and there could be other causes, but I do think it does need the hysteroscopy/biopsy done. 

If you want to talk things through before then please do give the Support Line a call and speak to one of the nurses. The number is below and I have found them really helpful.

Good Luck and please do let us know how you get on or if there is anything else we can do to help.

Jane

Thank you Jane. That is really helpful. I have not had another consultation with my GP since I was referred in March for the original scan. The hospital then moved me to One Health because the waiting list for treatment was a year. (Ridiculous I know) I suppose I have just been coping hoping the appointment would come through and things would progress. 
My husband has told me to ring GP on Monday as can see it’s all having an impact and symptoms are getting worse. 

They said at the Hysteroscopy appointment they would remove and replace minera at the same time. But I will definitely ask the question whether it is actually helping. 

Thanks so much for replying - I’m great at going doctors etc for kids, but probably need to look after myself a bit better. 

I agree with your husband- your symptoms are getting worse and you need checking. I would stress that you are aware that the bleeding and thickened lining can be a sign of cancer and you would like to be referred for an urgent gynae appointment. Also stress to them that the bleeding has been 18 days solid and you are feeling generally unwell and have developed the fatigue/tiredness. 

I hope they can move you to the urgent list to get the hysteroscopy/biopsy done

Hi Mumof2legends

I was fast tracked on the 2 week waitlist process (2WW) but my referral was from my oncologist as I was on chemo for bowel cancer at the time.

My bowel radiologist also referred me directly to womb radiologist another time. 

The 2WW means each referral step should ideally not be more than 2 weeks (so with multiple investigation steps this can be 1-2 months). However some hospitals do have backlogs and targets are missed.

I think jane2511  is right. Get reassessed by GP and get onto the 2WW fastrack if criteria are met.

Thanks all, contacted doctors and have been given a telephone appointment for Monday to see if either some of my symptoms can be managed or speed up the process. Fingers crossed. 

Just wanted to let you know that I was pre menopausal and was diagnosed with endometrial cancer after a hysteroscopy to remove a large polyp, I was experiencing bleeding for around 50% of each month, around 10 days per month were ridiculously heavy. Feel free to ask questions if it would.help .

Thanks B74, there is so much on the topic relating to post menopausal cases and so little relating to pre menopausal - I wonder if this is why it is taking so long to be seen. I vary from periods lasting 10 days or more to then spotting continually. I just wear pads every day now as it feels constant. So far this month I have not bled for 2 days. 
I hope you got the treatment needed and are happy and healthy now. Be interested to know if you experienced similar delays. 

I had the symptoms for a long time before the gynae referral as it was put down to peri menopause approaching and the fatigue due to anemia BUT to be fair to the GP, much of this delay was down to my desire to avoid gynae investigations due to issues from my past. It took a long time to get the results from the trans vaginal scan about the polyp (around 6 weeks), but once I had those, it all happened very quickly. Results early August regarding the polyp and thickened womb lining, hysteroscopy under general anaesthetic Sept 6 to remove polyp and womb lining, diagnosis of cancer Sept 18, hysterectomy Oct 16, results re staging three weeks later and am currently awaiting results of blood test regarding Lynch syndrome (as the hormone receptors in the tumour have suggested this is the reason for the cancer). 

Hope this helps....let me.k ow.if you want to ask anything else. By the way,.I am 49.

Thanks so much for sharing your journey and really hope you get a positive final outcome. I am 42 and too be honest put some of symptoms down to that myself. You have helped me realise I need to be a bit more of an advocate for myself and push a bit more. I probably take too much of a - don’t want to be a bother approach, I am sure it is nothing. I let a couple of good days wipe out the bad so delay pushing or returning to GP. 

Please keep me posted on your final outcomes and am Wishing you all the best. 

Just wanted to give an update on my thread as I know people appreciate hearing progress, if not to align to own experience’s. I have finally had my Hysteroscopy today! Yay. (Strange to be pleased but so great to be making progress and know I am not going mad) 

Consultant has taken a biopsy of my lining and cervix. He said I have a very enlarged uterus the same as a 14 - 16 week pregnancy. Has replaced my minera but is not confident it will change anything. Spotted fibroids which he thinks is contributing to its size. Said he wi have a telephone appointment with me in a couple of weeks to discuss next steps. But does think regardless of histology I am likely to need a hysterectomy within the year. 

Will keep you posted on results. I am actually feeling very positive. Thank you all for your support.