Endometriosis coming back and now abnormal cells on smear.

[Lyz1224]

Hello all. I hope I can get some reassurance from you.

I will try and keep this as short as possible.

In May 2017 I had a laproscopy which finally diagnosed my endo after ten years of symptoms. After the lap I felt great, no pain, no horrible periods, no back pain.. All great as they treated it there and then.

However a couple of months ago I start feeling the pains again but worse, pain in legs.. Like a numbness, especially in bed and when resting, pain during and after sex, horrible periods with the mucus (sorry if tmi) and the pain in my pelvis is unreal. So I go for my smear.. Three weeks later I get a letter.. I've got high grade severe dyskaryosis and I'm fast tracked through for an appointment within two weeks. Which is this Friday. Obviously I am now on tenterhooks as I'm terrified what this examination could show up. I spoke to a GP who stated whatever has come back on the smear will not be anything to do with the pain im experiencing and it could well be the endo coming back OR it could be something entirely different.

Before my lap I didn't have a great deal of endo, my lap showed up small amounts and it was treated there and then.

But the pain im feeling now is almost constant in my lower back, lower pelvis and legs.

Has anyone else had this after a lap and has anyone gone through the examination for severe abnormal cells after a smear?

Thank you in advance

Lyz

[jjeemm]

Hi Lyz1224

So sorry to hear what you're going through and I'm sure the understandable worry is making you feel much worse.

The good thing is that you had the smear test which was able to detect the abnormal cells and now you're being fast-tracked for treatment. I also had the same smear test result as you back in 2010. I had a procedure done called a cervical loop diathermy where they burn off the suspicious-looking cells. It didn't take long and although not pleasant, wasn't painful at all. The only problem I had afterwards was that the site became infected (apparently it often happens) and I had to take antibiotics which then led to my getting a bout of thrush...a nuisance but just one of those things...

Anyway, ever since then all of my smear tests have come back as normal (thank goodness!).

At the time I had the procedure done I was also suffering from endo symptoms but didn't realise I actually had endo at the time.

My best advice is to focus on getting the right treatment for the abnormal cells on your cervix...at least you don't have long to wait... and then once that's over and done with, focus on the endo symptoms if you still have them...one step at a time. You may even find that the discomfort, pain and mucus may actually be related to the problems with the cervix and not endo at all.

Try and stay strong in the meantime. I'm sure they can remove the abnormal cells on the cervix for you and hopefully you'll feel much better as a result 😊!

Wishing you the best of luck!! xx

[Lyz1224 in reply to jjeemm]

Thankyou jjeemm, that's reassured me. I think I'm just so nervous about this abnormal cells and the fact my mum suffered cervical cancer . Do they do the loop thing at your first examination or do you have to be referred for it? My first thought and still thinking about it to have a hysterectomy. I've been so unfortunate with problems relating to the endo for so long I'm at my wits end and constant pain for the last couple of months has caused me to be completely miserable. I'm just so frightened but hoping Friday will give me some answers. Did you have a local anesthetic for your treatment? Thank you again x

[jjeemm in reply to Lyz1224]

Hi Lyz1224

Yes, I totally understand your concern! Anyone would be anxious in your situation, especially since your poor mum suffered from cervical cancer (so sorry to hear that).

But honestly, yes, I believe that once the abnormal cells have been detected, it is possible to very effectively get rid of them and prevent any further spread or possible likelihood that they turn into something more sinister. The main thing is to detect the cells in time - so thank goodness that's happened in your case.

Yes, I'm pretty sure I had the loop diathermy during my first examination...got a bad memory and it was 8 years ago 😵, but I'm pretty sure that's what happened. I think given the fact that your result has come back as 'severe dyskaryosis' it would be expected that you'd need the procedure there and then. Of course they'll ask for your permission and talk you through the procedure and ask you to sign something first. Honestly, though, as I said, it was all over and done with before I knew it. There was no pain because, yes, they do give you local anaesthetic and you don't feel a thing. As I said, it wasn't particularly 'pleasant', but no worse than a smear test really. The main thing is that it seems to have done the job with me and I'm very, very grateful I had it done!

I'm so sorry to hear you're at your wits' end - I think an awful lot of women with endo can relate to that! Experiencing constant pain is so exhausting and really does bring you down. Do think long and hard about having the hysterectomy though. Although some women say they never look back after having one and think it's the best thing they could have had, many others report having a terrible time afterwards. It's always so hard to know what to do for the best...and once it's done, it's done. My sister had one done because she had an enormous fibroid and had a terrible time when she had a period...awful non-stop bleeding and pain, etc. Anyway, although she's very grateful that she no longer has those terrible symptoms, she says that even 4 years later she isn't the 'same person'. She still has pain in her abdomen, has problems bending down, has put on a lot of weight and feels permanently exhausted and has lost her 'mo-jo' 😒. She's been given HRT but you have to be careful with that because having too much estradiol can increase endo growth.

I've also been told I need a hysterectomy with removal of cervix and ovaries because of my endo, but I'm holding out for the time being and trying to 'treat' myself with diet and supplements which honestly do seem to be helping me a great deal. I'm really loath to swap one lot of terrible symptoms for another lot!!

Anyway, please try not to worry too much about Friday...the main thing is that they get rid of the abnormal cells asap. As I said, who knows, you may find the endo symptoms reduce or even disappear after you've been treated (really crossing fingers!!).

If you can think of any other questions I might be able to help with, please do come back to me.

I'll be thinking of you Friday! Stay strong...you can get through it!! xx

[Lyz1224 in reply to jjeemm]

Thankyou so much for that reply. You have no idea how reassured I feel

I know a hysterectomy is a huge thing to think about and I won't take the decision lightly. And like you said the pain etc could clear up after I have some treatment for the abnormal cells. So I'm just going to have to wait and see what happens.

Thank you very much jjeemm you've really been a godsend today when I've felt at a low point will keep you updated xxx

[jjeemm in reply to Lyz1224]

Ah, how lovely!!! I'm SO pleased I was able to help 😊😊!!!

Yes, hang on in there...I'm crossing fingers and toes everything will go really well for you on Friday and yes please, do keep me up to date. Would be so wonderful if your pain went away too once you've had the cells removed...you never know!!!

Sending you all my best vibes come Friday.

Take good care, xxx

[Lyz1224]

Hello all.

Hope you are all well.

Two weeks to the day since I have had my colposcopy and still no results. But I'm worrying and need some advice or reassurance.

Since my colposcopy I have had my period.. Heavier and longer but that was expected.

However tonight I have had bad back lower back ache and noticed red spotting when I have gone to the toilet. It's not a lot, but it's bright red. Is this normal? I'm worrying as I had the treatment two weeks ago and feel already like I've waited a lifetime for the results. Also I am sure the consultant told me that the discharge shouldn't be bright red and if I experienced it then I should see the gp. A bit worried now.

Can anyone help. X