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Women's health

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Original poster

High risk servere changes.

17 replies

Bex4567 · 28/12/2022 15:39

Hi..please talk to me..my recent smear came back high grade moderate changes....I then had a colposcopy and a biopsy and lletz which came back cin 1 with clear margins...my 6 month smear 2 weeks ago has come back high grade servere which is worse than my original smear 🤦‍♀️...i already no im dying and I have cancer and how am I going to tell my kids I won't see them grow up 😭has anyone had this there 6 months check been worse than before hand ..please reply im not going to get through the next week

OP posts:
RedDiamond · 28/12/2022 15:42

Please calm yourself down. It takes an awful, awful long time to go from "changes" to Cancer. I had CIN3 at 25. I am treated every year and I am still here at nearly 60.

I can feel your pain. The waiting is horrible. But please, take hope that it will all be alright.

Original poster
Bex4567 · 28/12/2022 16:29

Thankyou for your reply it means alot...I wouldnt feel so bad if I hadn't of had a lletz only 6 months ago with clear margins and cin 1 ...so now to have high grade servere has come back as a shock coz thats higher than my previous smear of moderate 😭I literally feel this is my last Xmas with my kids

OP posts:
Original poster
Bex4567 · 28/12/2022 17:11

Anyone else had this 😭

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Original poster
Bex4567 · 29/12/2022 09:26

Anyone else had this im beside myself...cant eat,sleep convinced this is it 😭struggling as I only had a lletz 6 months ago

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Original poster
Bex4567 · 06/01/2023 01:25

No one

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over50andfab · 06/01/2023 01:38

Just to clarify, severe changes does not mean that you necessarily have cancer or that you are dying.
Can I suggest you join Jo’s Trust forum where you can chat to main women going through what you are and can ask any questions. forum.jostrust.org.uk

SamPoodle123 · 02/02/2023 20:06

RedDiamond · 28/12/2022 15:42

Please calm yourself down. It takes an awful, awful long time to go from "changes" to Cancer. I had CIN3 at 25. I am treated every year and I am still here at nearly 60.

I can feel your pain. The waiting is horrible. But please, take hope that it will all be alright.

Can I asked what they do every year? Is it leetz? Or do they just do a colcoscopy? Are you CIN3 every year or does it go down to CIN1? I am freaking out because I had moderate changes and I had the colcoscopy already. Dr said he thinks I will most def need treatment, biospy ordered as urgent. That really freaked me out, as I am worried if it is something more serious.....my friend thinks he probably ordered it urgent as I said I was super anxious and perhaps he thought better then leaving me waiting. But it just made me more anxious.

RedDiamond · 02/02/2023 20:31

@SamPoodle123 I am trying hard to remember it all. I was lasered quite a lot when I was younger, had a cone biopsy, more recent years it has been lletz, and I have had a fair few colonoscopy's as well. They also took me in last year and put me under GA so they could have a look as to my unexplained bleeding (I am post meno) found some fibroids and put a Mirena coil in. They also, while I was under, took a biopsy to be on the safe side and there was nothing to report thankfully.

They don't use CIN now, it is mainly done on the HPV scale and severe high-grade or severe dysplasia would now be CIN3 equivalent. Moderate changes, using the old way, would probably be CIN1.

I am amazed I am still here but after 35 years of treatment on the NHS I cannot complain as they have never let it become Cancer.

I am back on yearly smears now despite my age.

It is horrible worrying about it. All I can do and say is keep going for all your smears when you are called up. I am really pleased they have put you down as urgent because the worry is something you do not need. Good luck!

SamPoodle123 · 02/02/2023 22:17

@RedDiamond thanks for your response. Unfortunately, I am just the type that worries so much :( So the fact they have been speedy freaks me out! I think moderate is CIN2. I wish I had asked this to the Dr. Mild is probably CIN1. Some people are so lucky to not deal with this. I feel like it is hanging over my head. I was terrified when I first found out, then managed to get over it long ago, but that was early 20s and now I am late 30s, so I am even more terrified. I have been googling all day. Thanks for responding and glad the treatments have been working for you.

Original poster
Bex4567 · 05/02/2023 17:37

How many treatments have you had all together

OP posts:
RedDiamond · 06/02/2023 09:25

I virtually have a treatment a year/every other year.

I have asked several times for a hysterectomy to stop my having to go through it all again but apparently I am not "bad" enough for them to consider it. I just have what I have and I am not sexually active so it must just be within me.

lifeinthehills · 06/02/2023 09:33

A family member had this and had a hysterectomy. She's been all clear for over five years now.

SamPoodle123 · 06/02/2023 10:38

RedDiamond · 06/02/2023 09:25

I virtually have a treatment a year/every other year.

I have asked several times for a hysterectomy to stop my having to go through it all again but apparently I am not "bad" enough for them to consider it. I just have what I have and I am not sexually active so it must just be within me.

Wow, 35 years of yearly treatments?! Have you tried adding vitamins and eating healthier to help build immune system? I am trying to do that now. I do not smoke anymore (quit over 10 years ago)....but I was drinking a few times a week, so now I am cutting way back. I just did dry Jan, so at least I have already done that! And will now keep it to once a week or less. Do you have a lot of stress? I read that effects your immune system as well. I am a very anxious person, so I am trying to work on that.

RedDiamond · 06/02/2023 11:05

I have had a lot of stress over the years but I don't know if that has contributed? I was CIN3 at 23 or thereabouts. I was only picked up because of a Well Woman clinic where I worked. If (in those days) we had followed the NHS timing, I was not due another smear for at least 3 years. Not sure I would have been around today.

Every bloody year I get a little teary, here we go again... But the Consultants in their wisdom keep me battling on. I am nearly 60 FFS. Why do I have to go through this every bloody year. I just want a hysterectomy but they won't do it. They fitted me with a bloody Mirena coil last February, in order to stop my post menopausal bleeding. Took 6 months for that to stop my bleeding. Now I still have at least 2 weeks every 3 months of constant bleeding. Whilst they fitted the Mirena (under GA) they took a biopsy and said nothing to see there.

Sorry, I am not answering your question. I am just fed up I suppose. And yes, now that I am cracking on in years, I do take my health seriously. Mind you, I am being investigated now for an autoimmune disease and have just been diagnosed with Fibromyalgia. I do smoke but keep trying to stop and my alcohol consumption has been massively reduced. Makes me feel poorly. I eat loads of veg, make my own meals from scratch, Greek yogurt, salads etc. I don't exercise much as it knackers me the next day but I am trying to slowly build up my stamina with Pilates.

What can I tell you out of all of this. I am PROOF that if you keep going for your smears, you will be alright, honestly.

SamPoodle123 · 06/02/2023 11:13

RedDiamond · 06/02/2023 11:05

I have had a lot of stress over the years but I don't know if that has contributed? I was CIN3 at 23 or thereabouts. I was only picked up because of a Well Woman clinic where I worked. If (in those days) we had followed the NHS timing, I was not due another smear for at least 3 years. Not sure I would have been around today.

Every bloody year I get a little teary, here we go again... But the Consultants in their wisdom keep me battling on. I am nearly 60 FFS. Why do I have to go through this every bloody year. I just want a hysterectomy but they won't do it. They fitted me with a bloody Mirena coil last February, in order to stop my post menopausal bleeding. Took 6 months for that to stop my bleeding. Now I still have at least 2 weeks every 3 months of constant bleeding. Whilst they fitted the Mirena (under GA) they took a biopsy and said nothing to see there.

Sorry, I am not answering your question. I am just fed up I suppose. And yes, now that I am cracking on in years, I do take my health seriously. Mind you, I am being investigated now for an autoimmune disease and have just been diagnosed with Fibromyalgia. I do smoke but keep trying to stop and my alcohol consumption has been massively reduced. Makes me feel poorly. I eat loads of veg, make my own meals from scratch, Greek yogurt, salads etc. I don't exercise much as it knackers me the next day but I am trying to slowly build up my stamina with Pilates.

What can I tell you out of all of this. I am PROOF that if you keep going for your smears, you will be alright, honestly.

Thanks. I am def on top of my smears. Even when NHS put me on the every 3 years for smears, I paid for private in between as I did not want to go so long w out. I think the longest time I went w out a smear was during the covid period, so that ended up being 3 years I think. Bc I had a smear, then got pregnant, had the baby, covid happened and once I got invited for another smear by NHS I went straight away. Even with being on top of smears I am still anxious. It sucks.

The doctor did say smoking contributes to not being able to fight of the HPV. Have you considered to try and stop? I know it is super difficult and I only managed to stop when I got pregnant with my first...it was like a magic switch turned off and I was never interested to smoke again. Prior to that I tried a few times to stop and it was hell. But still, many people quit.

I hope your menapausal bleeding stops soon. It sounds difficult. That was the best thing about being pregnant...no more periods! Women have to go through so much!

Greentree1 · 06/02/2023 11:25

Have you tried the Macmillan cancer support web site, there is an online community (basically a forum) with sections on all sorts of different types of cancer. You will find lots of people in similar positions who can give you lots of information and support. You can also ring up to talk to Macmillan nurses about your concerns.

Original poster
Bex4567 · 07/02/2023 21:29

So you had a lletz procedure every year ?? For what cin ??? Surely u have no cervix left to laser off now 😪

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