Mentally struggling after gynae issues

[Mvshrln]

I feel exhausted and struggling mentally following various tests & treatments for "down there".

My first smear test at age 24 (I'm 29 now) showed CIN3 which were removed via LLETZ. 6 month check up was clear, then the 3 year check up was clear. I then had another smear test last month (1.5 years after the 3 year check up). Again it was clear.
Same year as my first smear test I had the coil removed but because the bloody thing got lost inside me they removed it under general anaesthetic. I had a womb biopsy at the same time as they wanted to double check for any abnormal bleeding (it was caused by the coil). They also found ovarian cysts (benign although it was a daughter cyst which apparently means a cyst within a cyst) whilst they were doing the ultrasound to find out where the coil had disappeared to.
Then this year I had bleeding after sex but GP wasn't concerned as it happened the day after my period ended and I'd had my smear literally 2 weeks before. I also had a transvaginal ultrasound which didn't show any abnormalities.

I have pretty gnarly health anxiety anyway but I think ever since my first smear test showing CIN3 I've felt so guilty and upset. No one else I know has ever had abnormal cells removed and I feel like it's my fault for being sexually active from a young age and having casual sex. I didn't understand what HPV was, my only concern was not getting pregnant so I was on the pill but wasn't sensible about using condoms as well.

Does anyone else have any residual trauma or anxiety following this type of thing? I am seeing a counsellor but to be honest I feel so so alone.

I know where you're coming from - since I was told I was positive for high risk HPV a couple of years ago, my libido has taken a nose-dive and I can only put it down to feeling a bit uneasy about having HPV and blaming myself for the number of partners I had in my 20s (although I always used condoms until I got an implant with my last long-term partner).

I've also had annual colposcopies and biopsies since 2018 (when I was 40) and this week an LLETZ as the latest biopsy a few weeks ago showed minor to moderate cell changes.

It's good you're getting help and support from a counsellor; don't beat yourself up about it. Cell changes and treatment for them are far more common that we think, people just don't talk about them. When I mentioned my LLETZ to my boss, it turns out that she has had one along with someone else in my team, so that's basically a third of us!

@Monkeybunkey thank you so much for your reply. My libido has absolutely taken a nose-dive too. I think this is also affected by the fact that having gynae checks/colposcopies etc can make you dissociate from that area of yourself as you are being examined clinically.

I think it's brilliant how much they keep an eye on things and how they can remove these cell changes. I hope your LLETZ was okay - did you have it under local anaesthetic? I had to have it under general as even the colposcopy made me faint and feel really unwell.

You are right that it is a lot more common than we think. I do wish people talked about it more as HPV is so ridiculously common that people sometimes don't even know that they've had it. I guess I don't have a lot of people to talk to about it but it's been affecting me for 5 years and I've got stuck in the mindframe that it was my fault.

It's been on my mind a lot more recently so I think I'm going to raise it with my counsellor to discuss a bit more, so I can try to move forward.

Yes, LLETZ was under local. It wasn't too bad really, there was probably less discomfort than biopsies with no anaesthetic.

I agree about disassociating from the area as it's not sexy being prodded and poked about down there! The nurse in the clinic was lovely, she held my hand the whole way through, talked me through what was happening and that we were nearly there, nearly time to go home and put my feet up etc. She was also very reassuring that this is very common treatment and not to worry.

I totally get where you’re coming from. Had Gynae issues for so long I’ve lost count of the procedures and examinations I’ve had, especially recently as they’ve finally listed me for total hysterectomy surgery.

I too feel guilty sometimes about things that happened when I was younger and whether I ‘caused’ the issues - rationally I know it is ridiculous (my consultant reassured me and told me so several times!)

At the moment I can’t even entertain any sort of sexual contact with my husband which he doesn’t understand but the frequent medical appointments etc. just take away any sort of sex drive I have.

This is so sad, OP. You have no reason at all to feel guilty for enjoying an active sex life as a young single woman. One of your partners must have infected you with HPV, but he probably didn’t know he had it.
Try to leave past regrets behind and focus on your happiness now. You need to reclaim your libido and think of your genitals in terms of pleasure, instead of illness/medical procedures. If you don’t feel ready for sex with a partner, why not start with simply masturbating, so there is no pressure, and just reconnect with feelings of enjoyment and relaxation. Once you have “reprogrammed” your feelings about your body, you may feel more at ease with being happily sexually active again with a partner. Don’t let a perfectly treatable medical condition spoil your life!

When my sister went for her first ever smear they told her she had grade 3 cells and she needed to have part of her cervix removed, if she ever gets pregnant she will need a cervical stitch as her risk of going into labour early is high. No body tells you about these things, I myself would have been much more careful with condoms etc if I knew what HPV was capable of. Sorry I don't really have any good advice, but I hope you are ok OP!

Hi @Mvshrln if it makes you feel any better, I tested positive for high risk HPV earlier this year and also required a LLETZ procedure. I have had a grand total of one sexual partner sometimes these shitty things just happen - I felt quite gutted I hadn’t had many exciting sexual experiences yet still managed to end up with bloody HPV!

It’s so so common, they drilled that into me at all my hospital appointment because at first I was so distressed to find out I had it. I have friends who had a MUCH more colourful and varied sexual history than me who’s first smears have come back HPV negative - the likelihood being that some of their immune systems just cleared the virus before their first smear. I hope you’re feeling better about things soon, I was 24 when I had the abnormal cells removed (turned out to be CIN 2) and I did find it all intense and scary

I also queried how transmission happened or how I could have avoided it - and the doctor who did my LLETZ said that even using condoms won’t necessarily stop it, as it’s so contagious with any skin to skin contact. The only way to ensure you never get HPV is to never have any sexual contact ever which isn’t realistic. All we can do is go to our smears when they’re due and keep an eye out for any dodgy symptoms!

@Monkeybunkey I'm glad your treatment went okay :) It's totally unsexy to be prodded around down there so much!

@AlwaysDancing1234 I'm sorry to hear how many struggles you've had, are you relieved to be having a hysterectomy?

@Babdoc

This is so sad, OP. You have no reason at all to feel guilty for enjoying an active sex life as a young single woman. One of your partners must have infected you with HPV, but he probably didn’t know he had it. Try to leave past regrets behind and focus on your happiness now. You need to reclaim your libido and think of your genitals in terms of pleasure, instead of illness/medical procedures. If you don’t feel ready for sex with a partner, why not start with simply masturbating, so there is no pressure, and just reconnect with feelings of enjoyment and relaxation. Once you have “reprogrammed” your feelings about your body, you may feel more at ease with being happily sexually active again with a partner. Don’t let a perfectly treatable medical condition spoil your life!

@Babdoc thank you so much for your message, I'm really touched by your kindness. Funnily enough, I contact the Eve Appeal as they do email support and the person who responded recommended masturbation and a vibrator to help reset how I view sex and to reconnect with myself!

@CarolVordermansBum thank you for your reply, it does help to hear about other people although I am sorry your sister had to have so much removed. That's the other thing that I never really know about - you don't know how much of the cells need to be removed. So when I had my trans vaginal ultrasound the doctor said she couldn't even see where they had removed the cells and I was like "erm is that normal then?" and she said sometimes they have to remove a large portion of the cervix. It's all so complicated! But yes I would've certainly been more careful with condoms if I had known and it was never ever mentioned at the sexual health clinic when I was a teenager.

@Greymouse20 it's so weird isn't it! sorry to hear your first smear resulted in CIN2 cells removed, it is definitely intense and scary getting it sorted but I am SO pleased that they can do it! I hope you recovered well after LLETZ and feel okay. Yes you are right about condoms not always being able to prevent it, it's useful to remember! Thank you for your lovely message xx

Thank you everyone for your really nice replies by the way. I've felt so alone and weird about this whole situation and it's really been comforting to have people be so kind to me!

@Mvshrln yes I am very relieved that they’ve finally agreed on a hysterectomy although I wish they’d listened to me and done it 6 years ago (they refused as I was too young). Would have saved 6 years of periods, anaemia and pain and countless appointments and procedures!

Wanted to say I’m struggling at the minute and thank you for posting. Had gyne issues for years LETZ done when I was 22 do always been a worry. But since 6 rounds of ivf and various other procedures associated with infertility. Had a baby a year ago but now really struggling to have sex again. Had it in August then a few days later had a bleed and didn’t stop for 3 weeks. So now really worried if I have sex I will bleed again so very anxious about the whole thing xx

[quote AlwaysDancing1234]@Mvshrln yes I am very relieved that they’ve finally agreed on a hysterectomy although I wish they’d listened to me and done it 6 years ago (they refused as I was too young). Would have saved 6 years of periods, anaemia and pain and countless appointments and procedures![/quote]
I'm so pleased you're getting what you finally want with the hysterectomy :) It's so frustrating having to battle for something like this. I hope the surgery goes really well and then perhaps you can begin to move forward and re explore the fun parts of having a vagina lol!

@Rockinghorse2019

Wanted to say I’m struggling at the minute and thank you for posting. Had gyne issues for years LETZ done when I was 22 do always been a worry. But since 6 rounds of ivf and various other procedures associated with infertility. Had a baby a year ago but now really struggling to have sex again. Had it in August then a few days later had a bleed and didn’t stop for 3 weeks. So now really worried if I have sex I will bleed again so very anxious about the whole thing xx

@Rockinghorse2019 I'm so sorry to hear that you are struggling too and to hear of your gynae issues :( huge congratulations on your baby though, that must've been absolutely wonderful after the IVF and infertility problems xx I'm the exact same with my approach to sex - very anxious to have sex and just really struggling. How does your partner respond to this? I'm struggling with this as my partner and I very rarely had sex anyway, but that was because of him and not me.

@Dollface20 thank you for your message - glad you are okay and congratulations on your child :) I just never knew about CIN or LLETZ or anything like that, the whole thing was so confusing and upsetting to me!

This thread has really helped me feel a bit more normal, thank you all so much I also spoke with my therapist yesterday and going to work on this more.