Failed hysteroscopy, what next?

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Hi, hope this message finds you well.

I recently joined back in October, when a vascular mass was found in the womb, turns out to be in myometrium not endometrium following mri. Anyhow attempts at hysteroscopy failed, first attempt at gaining endometrial cells because the pipelle couldn't get through the cervix it was closed after 2cm. Saw another 2 times for it first I was too nervous, second they used large speculum but smallest was requested twice. Then after promised gas n air was told can't due to COPD which I understand just confused as to why it was written up and still is? Then I have burnt out Takayasu, so have subclavian, carotid occlusion and cerebral hypoperfusion. BP was to be measured constant it wasn't until I was leaving and felt tired as I had to say stop as it was painful.

Had been referred to see if spinal anaesthetic possible? Then another appointment this time with oncology clinic and expected a consultation as it said but was for another hysteroscopy, I said no and explained why, and then was told it wouldn't be possible anyway because it's in myometrium! Yet again it's I declined. But found out I have "cervix is anteverted, the uterine body appears severely retroflexed. Endometrium orientated at 90 degrees to the endocervical canal." on MRI at this appointment when discussing next steps. She said even during general anaesthetic would be difficult to obtain and usually hysterectomy is gold standard.

However I can't have GA as have the complications of cerebral hypoperfusion and the stenosises. My question if this was known back on 28/29th October, why was hysteroscopy pushed so badly in outpatient, why have they said I declined each time when the physicality meant not safe/very painful and can't have anaesthetic.

So now Leiomyosarcoma and cancer has appeared on health summary but I've been told probably benign but not sure in face to face and follow up scan in April. I was called for that MRI 16th January instead, just over a month from last consultation.

I'm not being explained to properly and it's scary

Especially saying I declined as too anxious, that's not true it was too painful.

I guess I'm wondering if biopsy not possible how do I get treatment?

jane2511 1 month ago

I am sorry to hear that you are not getting the explanation and clarification that you need.

I wonder if it is worth making an appointment with your GP to go through everything on your record to see if they can see what may be going on. Every time I was seen at the hospital my GP was sent an electronic update and I wonder whether you GP is the same. Your GP will also have all your other medical history regarding being unable to have a general anaesthetic etc

My own GP was able to then contact the hospital directly and move things forward.

With womb cancer the cancer moat commonly starts in the glandular cells of the endometrium and those are the cells that are normally biopsied during a hysteroscopy. However sometimes womb cancer can begin in the muscular wall of the womb- the myometrium and this may be a type of uterine sarcoma. Leiomyosarcoma is one of these types. When under going any testing that is hopefully ruling out a cancer- looking on your health summary may say something like query endometrial cancer- at this stage- and in your case, where there has not been a biopsy- no one can say for sure what is going on. It sounds like they are trying to rule out leiomyosarcoma. They have also said they believe there is something benign going on.

I wonder if the follow up scan and face to face appointment in April is to look again to see whether anything has changed or if the mass has remained the same. It may be this that could suggest whether it is benign or not.

However waiting until April to get further information does sound a long time and you have questions that you need answers to now. This is why I think it would not hurt to go to your GP and ask to go through everything available and for then to ask the GP to contact the hospital for an update.

You could also give the Support Line a call and talk things through with one of the nurses. They would have the medical knowledge to know what would happen if a hysteroscopy/biopsy can not go ahead and what may happen instead.

I am sorry that you are having to go through this. It must feel very worrying and you just want to know what is going on. I hope that your GP may be able to chase things up for you.

Jane

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

Carot333c82 1 month ago in reply to jane2511

Thank you Jane 2511. I did speak with my gp, she's incredibly supportive I'm sure luck in that respect. She said to see what they say following this scan from 16th Jan once I ring as still have no rults and neither has she. I next speak with her in a fortnight. I will try to speak with her before then, much appreciated

jane2511 1 month ago in reply to Carot333c82

I'm glad your GP is supportive. Mine was and it does make a difference. Hopefully once the results come through she can have a look for you.

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

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