I have been suffering with end... - Endometriosis UK

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I have been suffering with end...

1312 profile image
1312
6 Replies

I have been suffering with endo since I was 18 years old. I am now 24, 2 operations later and it's deffo back. I have been having horrendous back pain since this time last year and have just put it down to the endo been back and maybe my IBS. I recently saw a display regarding cervical cancer and saw that a symptom was lower back pain. I mentioned this to my doctor and I made an appointment for a examination and maybe a smear.

I have had to wait around 4-5 weeks for this appointment due to holidays and things. Within this time I have begun to feel quite unwell some days. My bowel habits have been horrendous, the lower part of my tummy is constantly swollen, every time I eat I feel like I have eaten a massive meal (even if it's only a salad) I have actually not been very hungry which isn't like me... I've had lots of things and I haven just generally not felt myself.

I went to the appointment on Wednesday and the doctor began the examination. It was so painful and she couldn't continue. She asked me how old I was and then said I needed a referring for a colposcopy as I had a large amount of cells on my cervix that shouldn't be there.

I am now so concerned and scared this is going to be something really bad and I am struggling to get up and feel ok, or not worry myself.

I don't know what to do with my little self :-( everyone says don't worry but it isn't effecting them. It wouldn't be so bad if I wasn't feeling so rubbish every day either.

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1312
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6 Replies
sjgardiner profile image
sjgardiner

Hi I'm so sorry you're going through such a hard time! I know what you mean about everyone telling you not to worry but they're not the ones who are going through what you are. But you do really need your family and friends around you. The problem women have is that a lot of our symptoms can be indicators of all sorts of things, so try not to fear the worst, it could be that your endo has travelled somewhere else creating new pains? I really hope Your appointment goes ok, I'll have everything crossed for you! If you need someone to talk to, who is in almost as much pain as you, just message me I'm happy to help. I know how lonely waiting for a diagnosis and how scary it can be to wait!xx

1312 profile image
1312 in reply to sjgardiner

I've been really quite poorly this week with horrendous pain. I'm really not sure what an earth is going on but I just feel exhausted and horrible. You know when something isn't right with your body, and that's exactly how I have felt over the past few days.

I am feeling very sorry for myself and just don't quite know what to do or where to put myself to be honest.

:-(

Thankyou for your help!x

cupcakegirl profile image
cupcakegirl

Please don't worry. I actually had to have a colposcopy at 22, a week before my endo diagnosis. All of the symptoms you've mentioned including IBS are symptoms of endo so there's nothing to be overly concerned about in terms of your symptoms.

The most likely cause for what the doctor saw, especially if they saw a lot of unusual looking patches, is something called cervical erosion. It's most common in women on the pill although anyone can get it. It sounds really scary but it's not. It's just cells that should be above the cervix growing on and below the cervix instead. If they're causing things like bleeding after sex or watery discharge they can be burnt away, otherwise they can be left as they are. I find internal exams excruciating but the exam part of the colposcopy wasn't too bad - I am frightened of needles so allowed them to take a biopsy without a local anaesthetic. I would not recommend this - I'm sure the anaesthetic would have been better. In my case they actually found pre-cancerous cells which scared me to death, but all of my smears since have been clear.

Don't think the worst - just wait and see x

1312 profile image
1312 in reply to cupcakegirl

Can the cells make you feel ill? i have been pretty poorly this week and I have ended up having some days off work which is really not like me.

I have had so much pain I am taking lots of painkillers now. I still have no appetite, when I eat it just makes me feel horrible and really full. My tummy is so swollen and I have no idea why.

I am so confused and worried I just don't know what to think :(

cupcakegirl profile image
cupcakegirl in reply to 1312

I constantly look between 4 and 9 months pregnant thanks to the endo - I'd say your pain and symptoms are far more likely to be related to the endo than the smear findings. I know it's scary but the stress and worry is probably not helping how you feel either. When are they doing the colposcopy? x

1312 profile image
1312 in reply to cupcakegirl

I would say I look 4 months pregnant, it's so swollen from your pubic line up to my belly button and I even have two little lines at each side that make me look like a pregnant belly. It's really not attractive. I am going on the 14th as my other half is away for a week at the beginning of October and didn't want to ruin his holiday or go when he isn't here. I sort of hope it is my endo and nothing to do with these cells. It's just really odd how poorly I have become and been in the last 6-8 weeks with pain, appetite, bowels etc. it's so frustrating and its stopping me been able to do things I want too do. :-( thank you for your support x

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