So, if it's not cervical cancer, what could it be? I really should be patient and wait for the experts but can't help worrying...

[PurpleLostPrincess]

I had laser treatment for CIN level 2 cells about 10 years ago and have had clear smear tests ever since. However, since having DD2 (2yrs old), my periods have been hurrendous, to the point where I almost rang an ambulance once. I've never been strictly regular, generally around every 3 weeks or so but in the last year I can vary from 5 weeks to 2 weeks. When I'm on my period, it hurts to poo and hurts when my bladder is full. I even rang the emergency doctor once as having a poo made me bleed. Went to see the doctor in July and told her all of this, thinking I may have fibroids (my Mum has really bad ones) and begged to be sterilised as I really don't want any more kids. (long story!). I also had my smear done while there so she checked for fibroids, but found nothing... She convinced me to have the merina coil fitted and I agreed as I can't cope with all these problems any more.

Since then, I've had spotting inbetween periods and I came on two weeks early on holiday, then had more spotting last week as well as discharge. I've been constantly aching like I'm on my period and my hips have been in agony (have been since I had SPD with DD2) but moreso than usual. Then, we come back off holiday to a letter saying I need to see the colposcopy clinic, rang the doctor (my regular GP) to find out how that effects me having the coil fitted. He said to wait until I see the clinic and that I have CIN level 3 cells this time and that if I don't get an appointment in the next few days to ring him and he'll hurry them up. Got the appointment through and it's for next Wednesday (DD2's 2nd birthday ).

My nanny died of Cervical Cancer so my head is going in all different directions. My mum had an early menopause at 38, I'm now 32 so could it be that? OR could it be cists or something not so sinister? I really don't want any more children so I'd be happy to have a hysterectomy if they want me to, it would certainly end all of this pain and worrying. Part of me knows it'll all be fine, but part of me is spinning about the 'what ifs'...

Sorry to babble, well done if you've got this far lol!

PLP xx

Hi,

got to make this quick as don't have much time -
really sorry you're having these problems.
It sounds really like endometriosis, especially the period pain, pain and bleeding with bowel movements and sore bladder.

Don't rush into a hysterectomy to cure the symptoms (unless necessary for the level 3 cells, I wouldn't know, sorry to hear about that). If you have endometriosis, a hysterectomy often isn't a cure and the pros/cons need to be thought about v. carefully.

Try here for info on endo - look up the symptoms and see if it looks like you. You need to get referred to a gynaecologist who specialises in it, because if it is this it needs to be diagnosed, and if it isn't they need to be looking at other causes.

hope this helps.

Thank you, that's really helpful, it could be that then. I forgot to say I get lots of clotting still and a friend of mine had endo and that was one of her symptoms too. You've been a great help

It sounds like endo to me too, and is just really unfortunate that you have CIN3 too. There would be no indication to have a hysterectomy for CIN3, but theres good ways of treating endo.

When you go to the colposcopy clinic, I'd make sure I told the Dr there about your symptoms, as your treatment for the possible endo might be different (I know a lot about cervical cancer, but not a huge amount about endo)due to your CIN. But they will be a gynae, so might be able to fast track some investigations as you'll be in their system

Thanks

Getting nervous now, appointment is on Wednesday but have to stay as normal as I can what with DD2's 2nd birthday but I'm sure I'll cope.

Bled again for one day and have been in agony with pelvic ache and my hips are playing up as usual...

Can't decide if I should go in with a list of my symptoms and be all 'proactive' or just wait to see what questions they ask me. My friend is coming with me, she's a senior sister in an ICU which is handy!

PLP

I would have also thought endometriosis is a possible cause. Unfortunately no blood test or scan will detect it; its usually diagnosed through a keyhole surgery procedure called laparoscopy.

Not really surprised to see they found no fbroids. Pelvic pain, bladder and bowel involvement and hips playing up can all be symptomatic of endometriosis as well.

Be proactive; take in a list of symptoms (infact keep a symptom/pain diary) and make them listen properly to you!!!. It is all too easy to be fobbed off and if they are unsure ask to see someone who would be more certain.

As Vigilante (hello!) writes a hyst is not always the answer to endometriosis problems (particularly if there is bowel involvement).

You need a diagnosis first and foremost and you will need to be persistant with them in order to get answers.

Hello ladies, well it's been a non-stop day today what with the appointment and DD2's birthday...

Basically the consultant was lovely and really took me seriously. He took 2 biopsies and is getting his secretary to book me in for a scan. He wants to see me as soon as the biopsy results come through along with the scan results. He said that he could have done the laser treatment today but that is usually when they want to 'cure' you and send you home but based on the fact that I've had the treatment before and I've had all these symptoms, he wants to investigate further. Also, he said IF I am to have a hysterectomy done, they would have to wait for my cervix to heal so it's pointless putting me through the treatment today.

So, none the wiser, slightly sore but on the whole I feel good that they have taken me seriously and that something is being done. Apparently the results take anything up to 4 weeks so will pop back to update as and when I hear anything...

Cheers ladies! xxx

Hmmmm, had discharge as expected for a couple of days which died down but started bleeding overnight - not sure if it's af or from the biopsies, will keep an eye on it. I'm in agony like its af though...

Just got a call from the hospital, going for a scan this afternoon at 2pm.

OK, glad thats over - have never enjoyed a wee so much in my life lol!

Confirmed not fibroids so at least that's ruled out for now...

Sounds exactly what I am having!
I had an internal scan last month, and it was clear, so no fibroids. They wouldn't do a smear, because I wasn't due one (!!??) but recommended I go to the genito-urinary clinic. The doctor there took a cell sample (she said it's exactly like a smear, but without the beurocracy). She took it away and looked at it while I waited and that was fine too.
Obviously I'm relieved that it was ok, but now feel like I'm back to square one.

PLP - came and hunted your thread out! Nothing I add I am afraid aside to say that i hope you feel better soon. And

How was the 2nd birthday? We are having a little one this sunday for DS! Cannot wait, am attempting a peppa pig cake from scratch!

xx

Oh thank you Dal, I bet it will be gorgeous! Make sure you put pics on fb of course lol. I haven't had a chance since DD2's b'day but will try this weekend. It was brilliant thanks, she seems more grown up already! Did you see about her potty training herself on fb? Thanks for the hugs, will put updates on here...

twirlymum, hope they find out what the problem is

Thanks, you too

it really sounds like you have 2 problems here Princess, one is the issue with your smears that they are looking at, and the other being the painful, constant bleeding. I think that sounds like endometriosis - I suffer from this too, and your symptoms sound classic for it.

Hope they find out whats wrong soon and can sort it out for you.

Got my appointment through - it's next Tuesday 22nd, at least I know how long I have to wait for! The waiting is doing my head in but not a lot I can do about it...

Right, just got back from the hospital. Basically the biopsy didn't reveal anything either way because it wasn't taken from the right part of the cervix but because of my history, the consultant would like me to have a hysterectomy, yay! He will decide on the table whether or not to do it abdominally or vaginally (different recovery rates from what I've read) and it should be in the next 2 months so maybe in November. He said he'd rather not leave it any longer than necessary but at the same time, he's not saying it's urgent. It might not sound like it but he's actually a fabulous consultant! He will leave my ovaries in as there's nothing indicating that they are causing me any problems.

In the meantime, I've been in pain again the last few days, at least that'll all be gone soon!

So, feeling a bit strange not knowing what really is wrong with me but extremely relieved to know that something is being done about it. Also thinking about getting geared up for being out of action etc. I asked him about hair removal and he looked at me funny lol! Maybe it's a woman thing...

OK, a bit freaked out - really shouldn't google things should I!

Have been reading up on hysterectomies and noticed that many women have them because of prolapsed wombs - wasn't sure what that was, so did some research and found very similar symptoms to what I've had, especially the hip/back/pelvic pains.

Then suddenly realised it could be a possibility for me - before having DD2 they always had to use an extra long speculum thingy to get to my cervix. I remember this quite clearly as I'd often be left on the table while they go to find one and be told to put my fists under my bum.

Anyway, when my doctor did the smear in July, she found it straight away - then when they did the colposcopy, they found it easily too...

I've never been able to feel my cervix before but I've been in a lot of pain these last few days and thought I'd give it a try and oh my goodness, it's not far off hanging out - I can feel it easily with my finger.

Question is, should I ring the gynae nurse or just wait until I go for my pre-op? Or see the GP?

My head has been spinning just lately and I know I'm probably getting myself in a tizz over nothing but at the same time I can't help it

Bump!

I'm not really a neurotic person in rl, this is the only place I can freak out, please help!

It probably won't hurt to ring the Gynae nurse if you've been given their number as a contact point. You should go in for a pre-op assessment anyway, but if you're having more problems and incresed pain, then you may be able to get moved up the waiting list. They may also be able give advice on how to manage it in the meantime.

The business of taking the biopsy from the wrong part of the cervix, could mean several things:

1. it was the right 'geographical' area but didn't show what they were expecting it to
2. the colposcopic appearance is not sometimes exactly what is then seen histologically.

e.g. I see histology reports where a punch biopsy has been taken from the ectocervix and TZ area, but the material sampling contains endocervix only. I.e. it's still part of the cervix, just not exactly what they thought they'd sampled.

1. Endometriosis (which you don't necessarily have but was discussed earlier in the thread) can be present in the cervix and can be tricky to interpret and identify in Pap tests.
2. if you have a prolapse this has probably altered access and areas available to be sampled.
3. Did you have the Mirena fitted?
4. What did the Dr say about your smear test result - you had the biopsy as the smear was 'CIN3' and now they have suggested the hysterectomy...did they say whether they think you have a cervical abnormality still?

Give the gynae nurse a call tomorrow hopefully they'll be able to put your mind more at ease.

Thank you so much Bella, that's very informative, reassuring and helpful! I rang my GP in the end and he has booked me in to see his gynae specialist tomorrow morning... Will let you know!

Hmmmmm, went to see GP, she said that it has dropped based on what I told her but that it's not classed as prolapsed because basically it's not hanging out! Told her how much pain I'm in, that I'm very tender around there and that I'm weeing every five minutes but didn't seem to make any difference. Bit annoyed as I know my body but hey ho, just have to wait for the operation date now

Hi Princess, I have lots of questions! Feel free not to answer any of them!
Did the GP examine you, by which I mean actually try and look at your cervix?

Please ring the gynae nurse, if there's a contact number they've given you and ask to see them again. Otherwise try the consultant's secretary.
I am interested as to why you had a smear result suggesting CIN3, the colposcopy appearance was high grade CIN, the biopsies appear to have been inadequate (from what you've said) but that they're happy to wait up to 2 months for you to have a hysterectomy. Was it an ultrasound scan you went for of the pelvic areas?
Personally I would push to be seen again and soon. Did you see your usual GP today (the first post you said he and today's she)?

I am not saying that you have got something wrong as the symptoms (as others have said) can be due to conditions such as endometriosis but (again my personal opinion) I would want to get a 'better' explanation and treated sooner, particularly as your pain etc seems to have got worse.

Hello Bella, you're truly fab! Happy to answer questions...

Just to clear it up, my family GP is a guy, he booked the appointment yesterday with the surgery gynae expert who is a lady. My consultant is a man, he is brilliant too.

Yes, she did look at my cervix - she said it's just at the end of the speculum which is normal - I explained they always used to have to get an extra long speculum so it must have moved a few inches but again she said that's OK

Yes it was an ultrasound scan, much like a pregnancy scan - they measured my ovaries and said they're healthy and also ruled out fibroids. They've never even mentioned endo, not sure why...

She (yesterday) also said that 8 weeks isn't very long to wait for a hysterectomy, I have nothing to compare it with so I guess I've just accepted it. I agree it might be worth me ringing the gynae nurse, especially as it was offered.

Just to confirm, I WAS going to have the mirena fitted but it never happened, partly because the doctor who normally does it was on holiday the week I was on my period, then the second month, we were on holiday and I came on two weeks early. When we got home from holiday, I had the letter about colposcopy and my family GP said not to have the coil fitted for the time being.

It's all a bit of a mystery to me to be honest but because I want the hysterectomy I guess I've been accepting of what has been told to me. I'm so tired from being in pain, poor DH has been looking after me well with hot water bottles and not letting me lift anything (on the advice of my SIL). He also banned me from looking up my symptoms on the computer as I would get myself in a bit of a tizzy lol!

Will call the gynae ward now... thank you so much for taking me seriously and taking the time to post etc, you seem to know what you're talking about!

Sorry haven't been around for a while, the whole family has had a cold so it hasn't been pleasant!

OK, so DH and I got a bit fruity the other day, has been a while so was rather cautious but all went well - I even felt like the pain had eased off!! Thought I'd check my cervix, like you do! And it has gone back up !!!!!! Rang the gynae unit and they said that I should call again or see my GP if the pain comes back. I guess we could just keep having sex to prevent it dropping again!

In the meantime - I have the date for the op - I'M HAVING A HYSTERECTOMY ON 10TH NOVEMBER!!!!!!! Can't believe it, so pleased to finally know when it's going to happen!

My next question is this: IF my uterus/cervix is floating around in there, does that mean they are more likely to go for the abdominal route? I've said I have no preferences and the consultant said he would decide on the table whether to go vaginally or abdominally... I'm just curious really...

Anyway, best dash, DH is building a computer and needs a cup of tea!