3 procedures, now the wait again..

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Hello, I've been lurking for a while as I've not had a diagnosis yet but am now waiting to get results at last...

I started experiencing post menopausal bleeding a couple of months ago and went straight to my gp who referred me on the 2 week pathway...I should say that I am familiar with these timings as went through breast cancer late last year and had a lumpectomy with some lymph nodes removed, everything was good and I completed 5 days intensive radiotherapy in February. Am now taking Tamoxifen for 5 years...so back to the 2 week pathway, which was actually 3 weeks, but went to the gynaecology unit for a vaginal ultrasound and they also did a biopsy due to my cancer history, plus my family history also which is quite full with ovarian and breast cancer. The ultrasound showed some thickening of my womb lining (11mm) which they were not too concerned about as Tamoxifen can cause this, and they were pretty sure that my bleeding will be caused by polyps. So I needed to return for a hysteroscopy, again about 3 weeks later. In the meantime the biopsy came back with no suspicion which was a bit of a relief. Eventually the day came for my hysteroscopy and of course I had read loads about this procedure and was sh***ing it! But it turned out the worst part was the speculum opening up and it was fascinating seeing inside my womb! And the initial suspicion was confirmed, there was a pretty large polyp sitting there. Unfortunately this couldn't be removed due to its size and positioning which was a blow as I then had to gave another appointment for a myomectomy....something I had never heard of...and this was explained to me that it is the same as a hysteroscopy but using slightly different instruments to cut away. This made me feel OK with it as the hysteroscopy really wasn't too bad. So, fast forward 2 weeks to yesterday when I was booked in at 11.30 for this procedure. Arrived nice and early to be told they are running an hour late...bleugh, more time to feel more and more nervous, but kept telling myself the hysteroscopy was OK so this should be OK too. Eventually I was called through and introduced to the consultant carrying out the myomectomy. It felt different to the last 2 visits and I wasn't expecting to see a consultant! She explained this is more invasive than a hysteroscopy as they need to get in with larger tools. She said she would use local anaesthetic which was a relief and if I wanted gas and air it was also available. OK let's just do this,  also would have an antibiotic pessary in my bottom at the end of the procedure....IF I EVER NEED THIS DONE AGAIN IM BEING PUT TO SLEEP! Oh my gosh, it was not pleasant as it took lots of pushing and pressure to get through my womb opening. Once in it was bearable but by now I was a huffing puffing sweating wreck lol. Anyway, the polyp was there, plus 3 more. I asked how big and she said about 2 cm. I didn't know there were multiple polyps and they said they can sometimes hide. But they didn't look hidden when I saw them on screen. Anyway 4 removed and sent to the lab. I made it out of there and now the waiting starts again. The consultant says she doesn't see anything worrying...but how can she know? My gp wasn't worried about my breast lump either....

Has anyone else had a myomectomy in outpatients as all I can see is a surgical procedure for this, or the very least using a hysteroscope under general anaesthetic. 

And should I be concerned that these polyps could be cancerous, or pre cancerous? 2cm, post menopausal, history of breast cancer....yep I've googled it.

What doesn't help is that I am also waiting on genetic testing due to my family history so if I have a gene mutation I may need preventative surgery anyway! I feel kind of doomed and feel my life has been on hold for so long now with the constant waiting for results...

I should say I'm 51 and last period was over 3 years ago.

Anyway, if you're still reading and haven't switched off after my waffle  thank you! Laughing

  • Hi ItsJustMe,

    Just popped by and noticed your post. Back in 2019 I was referred on the two week pathway after one episode of light post menopausal bleeding I was 58 at the time and not had a period for two years.  When my appointment with  gynecology arrived I had a hysteroscopy there and then which wasn't pleasant but doable for me. This showed a small polyp which they said they would remove at another appointment. Well around 4 weeks later the appointment arrived for myosure, which I think is a myomectomy, I was given a local anaesthetic and they removed the polyp and another small one they found, the consultant said everything looked ok and I would receive a letter in around 6 weeks. Now I don't want to frighten you as polyps are often innocent, but I received a letter within about 10 days with an appointment with another consultant, the results being that grade 1 cancer cells were found on a background of pre cancer. A full hysterectomy by keyhole followed in August 2019, at my follow up the histology was confirmed as stage 1A grade 1 and no further treatment required, I am now on the patient led follow up plan, I've been fine since.

    I hope everything turns out well for you, though I know you'll be worried about the results, it's the hardest part. Please come back with any questions however small they seem. There's a lovely bunch of ladies here who all understand what you're going through with the wait for results.

    Carolina61
  • Hi Carolina, thank you for your reply and sharing your story. We have a lot of similarities don't we? I'm getting used to the waiting game now and just want to know either way so I can plan my life! I wish medical professionals would just not say anything rather than get peoples confidence up by saying they don't see anything worrying. I know that nothing can be ruled out until its looked at under a microscope. 

    I'll keep popping back and as soon as I have my results will post again.

    Hugs x

  • Hello itsJustMe

    Welcome to the Womb group. It is fine to lurk for a while- I think a lot of people do before they post. I found it helpful to begin with just to read about other people's experiences. 

    I am sorry that you have had to undergo all the testing. I have never heard of a Myomectomy being done as an outpatient. It sounds like a difficult thing to go through. I hope that you do not have to wait too long before you have your results back but in the meantime please do use the forum as much as you want to. There are many lovely ladies on here who were a great support to me during my diagnosis and treatments. 

    I am sorry to hear that you have also been through breast cancer last year, needing surgery and radiotherapy. I hope that the genetic testing can be done as soon as possible to get it out of the way. As you say it does feel a bit like life is on hold while you have the testing and then all the waiting for results. 

    Hope that you are not feeling too uncomfortable after the myomectomy.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks Jane, I'm feeling much better today thank you Blush 

    I had bloods done for the genetic testing back in May. They said it would be 8-12 weeks for the results and here we are almost 20 weeks on! I spoke to my genetic counsellor earlier this week and they are really apologetic and tell me that there are significant delays and they are telling people 5-6 months now, so my results could be the end of November. My concern is worse case scenario, my polyps are cancerous, plus I have a gene mutation. I don't want surgery for cancer and then be told I need more preventative surgery, because my results come back late. I told genetics all this and what's happening and they said to keep them informed and if I need an op they will try to get the genetic results back quicker as they agree I don't want 2 operations...shame waiting isn't an Olympic sport eh? Lots of us would get gold! 

    xx

  • I had polyps discovered when I had a hysteroscopy back in 2019 and they had to be removed under a general because they were difficult to get at, 3 in all and results were normal.

    Fast forward to January this year and had some more PMB, thickened womb lining (8mmish) hystrtoscopy done, biopsy taken, polyps found again (3), these were removed under the Myosure method,  womb biopsy normal, but this time one of the polyps had atypia hyperplasia (precancerous cells) recommended treatment was a hysterectomy. First attempt at hysterectomy was abandoned as my blood sugars were too high, booked in for another womb biopsy and Mirena coil with scheduled hysterectomy booked for mid September…womb biopsy again clear.  

    Eventually had hysterectomy on 18th September, home the next day..unfortunately I have a huge haematoma  by one of my tummy wounds which they are currently trying to disperse (it’s getting there but taking it’s time), got my histology from my hysterectomy after 2 weeks (Tuesday just past) and no cancer, no hyperplasia, everything was normal, which a relief.

    My consultant said at the beginning that he was pretty sure the hyperplasia was just contained in that one polyp, looks like he was correct, although the Mirena coil could have helped clear any if there was some in the womb.

    Hope you aren’t waiting too long for your results and that they are all good x

  • Glad you are feeling better. It sounds like the geneticists have listened to your worries and I am sure the hospital would also want to limit any surgery where possible. The waiting is really hard and I think we have all experienced it at some point so understand. I hope you do not have to wait too much longer to get your results and that they are good 

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm