hysteroscopie

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Hi i had my second hysteroscopie on tue .

in nov 2022 i had one as ultrasound said my uterus was 4.4 had op done under G/A due to scar tissue and prolapsed bladder.All cells clear also said my uterus was thin and that was a good thing no follow up needed.fast forward i had slight bleed in nov 2023 and had another ultra sound now saying 6.9 almost a year later it had gone up so went in this week, they again took cells.

I did ask about marina ring as a nurse had mentioned it at pre op i had no clue about this ,and feel maybe i should have been offered or advised about it last year.

My worry is 1... about cells taken now 2... if they are clear now what are the chances of my uterus lining becoming bigger each year as the doctor said they dont worry until it gets to 11 i dont want it to get to 11 id rather stop it in ts tracks,but i know if all ok i wont be offered a hysterectomy so maybe thinking i should go private or ask about the marina ring with my doctor which i know is hrt and am worried that hrt can also cause cancer?

i have to wait 2-4 wks for results and she came around in recovery and i have no idea what she said to me.

is there any advise you can offer me in what i should be asking for i know i have to wait and see what the results are but i worry either way as if they are cancerous cells i know a hysterectomy may be offered if all clear i should be happy but will worry the uterus lining will carry on getting bigger and she did say they dont worry about the size of the uterus but i thought thats what brought me to their atention im so confussed and worried sorry for long message i dont even know what im really even asking i just need to get it of my chest i suppose.

Thank you

Fiona P - Macmillan 3 months ago

Hi I love cake,

Thanks for getting in touch and welcome to the Macmillan Online Community. My name is Fiona and I’m one of the Macmillan cancer information nurses.

Being told that you have thickening of the uterus lining (endometrial hyperplasia) can be stressful. It’s natural that you are feeling worried, having had a second hysteroscopy.

Waiting for test results can add to the anxiety. This information may help with easing the worry.

On the Support Line we do not have access to medical notes or NHS systems and so can give general information. For specific information about your situation, you would need to speak to the team that are dealing with you or your GP.

You said that the results from the first hysteroscopy showed that you had thin lining, and the cells were normal. This is called hyperplasia without atypia. The risk of developing cancer is less than 5 in every 100 women over 20 years. In many women the lining will return to normal without treatment. This may explain why they did not offer any treatment last year.

The Mirena coil can be used to treat endometrial hyperplasia. It releases a progesterone hormone which thins the lining of the uterus. This can stay in for at least six months, but up to 5 years. It has a good success rate in treating endometrial hyperplasia.

A hysterectomy may be needed in some cases. This would normally be considered if the hormone treatment does not work, the condition comes back, you develop abnormal cells, or you would prefer to have an operation rather than have Mirena coil.

You may find this patient information leaflet about endometrial hyperplasia, from the Royal College of Obstetricians & Gynaecologists, useful.

I hope this information helps. Please feel free to get back in touch if you want more information or support.

Best wishes,

Fiona P,

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref: FP/SS

I love cake 3 months ago

Thank you for replying and sending me the information,i am so shocked that my doctor or the doctor i saw never suggested the mirina ring it was only a year later at a pre op the nurse asked me if id been told about it and i said no.

i also found this information you sent me valuable as i had been told basically i had been discharged,even though i did email and ask should i not have a follow up scan as i was sure id read it somewhere that i should or could i have a hysterectomy and i was told no basically its due to their policys and cost no futher action needed,surely they have to follow procedures like these below. i was not told any of this and i think after reading i would like a hysterectomy but how can i get one if they wont fund it id have to go private and take out a loan?

"You will usually be recommended to have another biopsy 6 months after diagnosis of endometrial hyperplasia without atypia, and again 6 months after that. Some women may not need any further biopsies. If you have a BMI of more than 35, or if your treatment was with progesterone tablets, you may have a higher risk of the endometrial hyperplasia coming back. You will usually be offered biopsies every year. i found it intresting that the info you sent said we should go back "

are there any support groups that can help me get a hysterectomy through my local hospital ?

although maybe they will offer me one depending on results,its such a worry that im finding things out a year after my last hysteroscopy,but i do appriciate your advice so thank you

Kind Regards

Julia

Carole F - Macmillan 3 months ago in reply to I love cake

Hello Julia,

Thanks for getting back in touch. I’m Carole and I’m one of Fiona’s colleagues on the Support Line.

I’m pleased to read that you found the information she gave you, valuable.

As Fiona said, waiting on test results can be an anxious time.

When you get the results, it sounds as if it would be helpful to ask the consultant to explain in detail about follow up or why any recommendations have been made. They will be able to talk to you about national guidelines as well as local policy. This would give you an opportunity to discuss any concerns you have and to ask about surgery in your local hospital.

We’re not aware of any support groups that could help with this.

I hope this is helpful, but please don’t hesitate to get back in touch if you have further questions.

Sending best wishes,

Carole

Cancer Information Nurse Specialist

Our ref: VP

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