Ummm i'm in the wrong place but any help would be great!

Hi there, i am new to this forum but have used Healthunlocked forum to chat about underactive thyroid! I was looking for a forum for cervical cancer but am having no luck so thought i would try here...here goes...

I am 28 years of age & have two children, for the past few years i have had frequently repeated smear tests, which always indicate abnormal cells & have twice led to coloscopy & have also had a biopsy taken, which also came back 'mild changes.' My last Coloscopy visit was a few weeks ago where i was advised another smear in 6 months, this time at the hospital not at the surgery. I do get some symptoms of cervical cancer, spotting, however my periods are rather regular, i have also had a massive clot recently which was a bit scary! I get lower back pain, which i am booked in with physio for, i also get random abdominal pains & it's quite tender to press my abdomen, also i sometimes get pain during intercourse.

I have found the past two years very stressful with the appointments & then the waiting for results etc, i absolutely detest coloscopy appointments & work myself right up! How invasive! & yes i understand it has to be done, but everytime my smear comes back abnormal?? I certainly hope i don't have to have yet another prodding in 6 months time!!

I guess i am just wanting some advice really, has anyone else been through a similar experience? I am considering private care at the moment as i feel not enough is being done if there is something wrong, i panick sometimes when i look at my two young children, if something was wrong & it was being overlooked? I just get that horrible feeling some days, & then otherdays i feel i am being paranoid & if there was something major they would know right?

Would appreciate immensly any comments anyone has to offer!

Thanks very much,

Steph

23 Replies

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  • Dear Steph

    You've come to the right place as there are plenty of people who have been along your route - but unfortunately for us it's led to another diagnosis altogether.

    I also had a referral for a Colcoscopy and agree with you it's a horrendously invasive (unecessarily so I think) procedure. I hated it and was relieved when a gynaecologist suggested a hysterectomy so I wouldn't have to go through it again.

    If you're worried about Ovarian Cancer you should think about the common symptoms - bloating, abdominal pain, loss of appetite, changes to periods, frequency of weeing, etc. You can have a protein blood test done called a CA125 if you feel your symptoms are adding up to something more sinister - but having said that this test doesn't work for some women. I had absolutely no symptoms at all apart from loss of appetite which was so strange for me I went to the doctor. He found a lump ... and the rest is history.

    I'm not sure if I'd go down the private route myself. I'd try another visit back to the GP to say why you're worried. You can download the symptoms tracker from the home page of the Ovacome Website to record how you feel over a period of a month and show them to the doctor to start the discussion.

    Do keep posting and asking questions. We're not an exclusive club. If we can help we'd really like to do so. It would be lovely to think at the end of the day you'll have no medical need to stay on the forum. That's not unfriendly - that's just hoping you find it's something that is far easier to deal with than Ovarian Cancer.

    Let us know how you get on.

    love Annie

  • Thank you for being so friendly Annie! I was surprised that there was no community for cervical cancer & to be honest i saw that there were frequent posts & updates & decided to try here! I knew i would end up spelling 'colcoscopy' wrong! I can hardly say it let alone spell it!!

    I do suffer a few of these symptoms, but it's hard to distinguish between different disorders, i.e i have frequent urination which could be a side affect of the levothyroxine i take, i get bloated, which i put down to diet etc...i guess i feel sometimes like i am just being paranoid & should forget about it & get on with my life!

    I am just already getting wound up about my next smear as i know if it comes back abnormal again (which its bound to at this stage) it will be yet another colcoscopy & biopsy :(

    I have expressed these concerns to my GP twice already & have been told the same, 'abnormal cells & changes does not mean i have cancer so there is nothing to worry about' this then makes me feel very silly.

    All i keep thinking is, something is wrong, as the tests are showing, i just don't want to sit back & wait for it to develop! I think i will have to explore my options!!

    Thanks again for your reply,

    I'm kind of lost in all this at the moment!

    Kind regards,

    Steph

  • Dear Steph

    I'm so sad to read your story. I went along to my GP and said 'I don't feel well'. He asked what was the matter and I said I don't know I just don't feel well. I'm tired, and I'm not hungry. Can you give me some tests to find out what's wrong?

    Luckily my GP took this seriously. To be fair I had no ongoing medical conditions and rarely go to see him but we had some reasons to think stress might be the cause. He put me off work for 2 weeks to start with. We discussed what I was going to do to improve my wellbeing and agreed I would walk an hour every day and swim (his words were 'not skull around on your back') for at least half an hour x three times a week. He said come back after 2 weeks and tell me if you're feeling better.

    In that period I had time for reflection. I felt less stressed but said I felt a bit of a tummy ache when I swam. He found a lump in my abdomen and sent me off for a scan the next day.

    Now it would have been the perfect tale if there had been nothing amiss. Lucky the approach enabled me to help the GP identify what was wrong and we're dealing with it. I'm sure your problems are not going to be serious but you have nonetheless got a problem your doctor should be dealing with. If it's dreading the colcoscopy - I'm not sure I can help except to say that I wholeheartedly sympathise with you having to go through the horrible process.

    Take care. xxx Annie

  • Thank you Annie, you have helped immensly :) x x

  • Hi Steph,

    Welcome to our site,I am not sure I can help.... or add anything to what Annie has already said...I can understand what you are going through though...if they have found something ot quite right...surely they should do more than what is already being done.... I have found...

    jostrust.org.uk/about-cervi...

    cancerforums.net/forums/41-...

    nhs.uk/Conditions/Cancer-of...

    inspire.com/groups/national...

    I hop this helps...I am sure ther will be others on this site that have gone through the sam as you best wishes love x G x

  • Sorry about typing errors I noticed some letters are missing...I have tried the links the only one not working is the NHS one sorry

  • I forgot to say these are all links to cervical cancer xx

  • Thanks so much for this! Just about to check them out! :) x x

  • Hi Steph

    I agree with everyone else, talk to your GP! I would also recommend the BEAT symptom checker, as you can show that any symptoms are occasional/all the time. Whilst I don't want to worry you, pain during intercourse can be a symptom of oc, I had it, but didn't know it could be anything for concern. Ask for a CA125 blood test, the results only take a couple of days, so you will hopefully have your mind put at rest very quickly. As Annie said though, the CA125 is not always conclusive, you can get false highs due to a stomach upset or a harmless ovarian cyst. I hope this is helpful, and that you find out quickly that there is nothing to worry about.

    Good luck

    Chris

  • Something else to throw into the mix would be endometriosis. My sister has this and some of your symptoms mirror what she experienced. Might be worth discussing this when you have your chat with GP. There is a page on HU for this condition as well.

  • Hi Steph, I too had abnormal smears from the age of 21 which led to having colposcopy treatment at the hospital over many years. I am sure that when you had that done, if there was anything more sinister they would have given you more treatment. I ended up having laser treatment and cone biopsy and another form of treatment to clear away the abnormal cells, I was also told this was not cancer but pre-cancerous cells. I am now 51 and unfortunately find myself of here with ovarian cancer but it is not related. When you have your next 6 month appointment at the hospital I would ask them any questions or worrys you may have and they will I am sure put your mind at rest.

    Tess x

  • Thank you Tess, i do feel silly worrying as i am sure like you said they would do more if there was anything wrong, it's just always at the back of my mind! I'm not sure i can go back to my GP as i have been twice. I feel i need to probably just put it to the back of my head & try to forget it! Im sure worrying will only cause more problems anyway!

    Thanks again :) x x

  • Dear all, re colposcopy - I had one immediately before being diagnosed with Ovarian Cancer as my smear had shown a few irregular cells. Whilst the Colposcopy results showed no reason for concern the scan for Ovarian Cancer showed that the problem there was very well advanced. This does seem to say that you shouldn't think the two are in any way related.

    btw Steph - I had to google colposcopy to get the spelling right. The least they could do would be to make it easier to (a) say, (b) spell, and (c) endure !!!! My colposcopy consultant had a squint and had I not been so uncomfortable with the procedure I would have laughed wondering which eye he was going to use to look through that telescope thing.

    xxx Let us know how you get on. There's bound to be lots more suggestions if your GP continues to ignore worrying symptoms.

    love Annie

  • Dear Steph

    Please try to put out of your mind that you are being paranoid - I think that so many of us will remember feeling that way and yet at the same time that there was something wrong, which may have led to us not looking after our own interests as well as we could have. I know that was the case for me!

    An example: a woman at my support group was very athletic, did a lot of running etc. She began to notice that her race timings were not as good as they had been, and that generally felt a little more tired than usual. GP told her she was getting older, it was to be expected. She had a sense that something was not right. Went back and forth to GP. She really listened to her body and noticed a few vague symptoms and did internet searches. She went back to her GP and declared "I think I have ovarian cancer". THe GP was taken aback but agreed to send her for a test. It turned out she was right, but due to her belief in herself and her assertiveness, she was diagnosed at an early stage and is now fit and well again and back to running!

    I think Annie's suggestion to download the symptom tracker and discuss it with your doctor is a good one. If your colonoscopies keep coming back negative yet nothing is resolved, then maybe another test, such as a scan, would be more reassuring for you? I think you are entitled to keep questioning until your mind is put at rest.

    Good luck, Monique

  • Thank you Monique, i just feel such a pest going back & forth to the GP, i have underactive thyroid which i have been going for alot also & back pain, i feel i am exhausting the NHS just me alone! Lol. But you are right, if something was wrong & diagnosis was late due to me not being assertive enough i wouldn't forgive myself!

    I will try to get an appointment next week :)

    Thanks again x x

  • Good luck with that Steph. Take along the symptoms tracker and say you've talked to us. You'd be sad to read how many women have gone to their GP over and over again knowing 'something was wrong' and their fears have been trivialised. Of course an underactive thyroid does complicate things - but that's reason for your GP to be more vigilent than ever.

    xx

  • Dear Steph

    I have never had a colposcopy but il have, over the years, (I am old enough to be your grandmother) had many other very invasive procedures! The only way I have been ablr to handle them is to think of it as "having Dynarod in" unpleasant but necessary! I use yoga techniques to distance myself and relaxso I get it over with as quickly as possible with minimum discomfort.

    My mother had thyroid problems. So I sympathise.

    I don't know if it will help but I have a cervical erosion that I have had ever since testing started and it is completely unconnected to my ovarian cancer. My smears always produced the result 'unusual cells'. My OC symptoms were such that I thought I was just growing old! Indigestion, wind, difficulty in swallowing, 'middle aged spread', the OC was totally unexpected!

    I do echo what others have said about the CA 125 blood test! It is not definitive but it does provide the key to other tests. The earlier it is caught the more treatable it is. A scan would probably help to clear up symptoms!

    It probably doesn't help much but worrying can be worse than knowing, especially when you have little ones!

    Do seek further help from your GP! Ringing the Ovacome helpline will probably help as the nurses are very knowledgeable and reassuring.

    Thinking of you!

    Margaret! Xxxxxxxx

  • Thank you all so much for your kind replies! A few of them made me fill up, maybe because you have all made me feel that i am not paranoid & have the right to find out exactly what is going on! I will go with my gut instinct & get myself checked! Thanks to you guys i have a new lease of self-belief & i will make that appointment next week! Think i will also ask to see the lady doctor....she may just be a little more sympathetic!!

    Thank you all again ladies,

    Best wishes

    Steph x x x

  • Hi stevie.. I dont want to be negative as i am sure that there is nothing untoward with your self but i would really like you to be mindful of the fact that hospitals do miss things and if for no other reason than your own peace of mind i would recommend a second opinion.

    I was the same as you went all through my late twentys having regular smears with results of abnormalities followed by colposcopys and letz procedures. I was eventually discharged from the regular ones and put on routine ones. but as it turned out i had an invasive carcinoma back in 2009 that was missed by the gyne team. i ended up finding a lump in my stomach in 2011 that turned out to be secondary cancer. I have recently by accident found out that they think my primary cancer was cervical given that i had the invasive carcinoma back in 2009 that no one told me about..

    Im not telling you this to frightnen you in any way but i feel that we all need to get the best care and treatment that we possible can we deserve that right?

    If my story helps at least one other person from going through what i did then that will help me immensely. I hope that you will just take this as advice to always ask questions and be vertain that they are picking everything up.

    Good luck with everything.

    lots of love

    suzanne. xxx

  • I agree with Suzanne in fact she came straight in my mind when I first read your post and glad that Suzanne has commented love x G x

  • Thank you Gwyn.

    xxxx

  • Thank you ladies, i am very greatful for all of your comments, you have definately spurred me to see the GP & i have an appointment booked for tomorrow (hopefully with the lady doctor!!) As she has been alot more sympathetic with queries in the past!

    I wish you all love & luck with your own journeys & will be sure to keep you updated!

    Steph x x x

  • Hi Steph! Just to add to what the others have said, there is a website eveappeal.org.uk, which is specifically for gynae problems. You may get some info on there about your problem. Stay strong, and let us know how it's going with you.

    Love Wendy xx

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