New to this - worried and in pain

This is all pretty new to me....but here goes.
second Mirena coil was not suiting me - i could feel it. So asked for it to be removed in August 11 and go onto the Depo injection. Has second Depo in November 11. Around Christmas put on a lot of weight - like a stone, so January cut down and doubled cardio exercise (which is hard as i have post trauma arthritis in one of my knees plus cartilage damage). Weight still going on - and i am very active, notwithstanding knee injury.
At yoga last week - doing a forward fold (i am really flexible and can usually put my face on my shins) i struggled with this and felt like i was doubled over a hard ball. On Sunday morning in bed i felt my tummy and could feel a huge hard lump running from my belly button to my groin. (although it does seem bigger and higher when i have a full bladder)
So Monday morning - go to the Doctor - he is really worried and books me in for a scan asap (NHS in England urgent means a week later so that is Tuesday next week). He did a urine test which was fine and bloods which i don't know about yet.
I asked him what he thought it was and he "hoped" that it is a large fibroid. That was my initial thought too - as i had some small fibroids when they put the second mirena in, and possibly the Depo made one go bonkers. I don't know.
Pain is getting worse day by day and now i am on tramadol and some anti muscle spasm drug until we get the results from next week's scan.
So at the moment i am trying to cope with the pain, loss of appetite and trying not to worry too much and/or burst into tears all the time. Do these sort of symptoms ring any bells with anyone?
ps no bleeding at all - haven't had a period since first mirena in 2005

Tears and loss of appetite could be from stress. It is always scary not knowing what is wrong. Hang on until you get your scan.

Thanks for your reply Whirlygig. Yes i sort of know why i was crying - it was more whether anyone had a similar experience of the big painful lump etc. I am sorry that my post wasn't clear on that.

Good bit of news today is that i have had my bloodtest results and have high CRP (means inflammation) but normal levels of CA125 - whilst that doesn't rule out the C word, higher levels of CA125 would have been bad news. So test result is really as good as i could have hoped for


S

I was in constant pain also, ended up on Tylenol 3's for pain. It turned out to be ablation going wrong, causing fibroids. Blood tests coming back clear of cancer is good! Excellent! Hang tight, and take the pain meds. Bad news is that it will take a while to correct this, you may be facing a hysterectomy sooner than later. I'll be thinking and praying for you...

Thanks Jeszucs.

Scan showed 2 fibroids, one external near my right ovary 9cm across, the other one which is internal and pedunculated is 16 cm across, so no wonder i could feel lumps and bumps.

I have a meeting with my doctor on Friday and he is going to refer me to a specialist gyne. He says we are looking at a hysterectomy - i sort of knew that was coming but somehow saying the word out loud really upset me.

So i understand that there are 2 ways they can do it - via incision or laparoscopy (not sure on spelling on that). First one takes longer to get over, is that right? would they be able to do the lap one with big fibroids? what sort of timescale am i looking at? (am in UK so NHS).

ps I am 40 so this is pretty big

My cervix had been sealed shut after the ablation so mine had to be done abdominal. Most invasive ... I am 4 weeks post op today and feel alright, but am by no means back to normal life. Not able to go back to work, cannot drive yet. But I am starting to do small regular things again, carefully. Watch the post op videos and I have fallen in line with them nicely.

I think laproscopics is easier, but it completely depends on what they do etc. And how you respond to pain etc. I am a fast healer, except,when it comes to my lady equipment. Any time I have messed with my female parts there has been revolt and slow healing! This has been the same. First two weeks were quite painful, the next 2 weeks were slow but steady improvement.

I am 40 also, 41 in march. I admit I am still waiting to see if the ablation and fibroids pain is gone, because I still feel the pain of surgery itself. But if you read through other stories, their pain is gone. So mine should be too... It is gone-how can it hurt!?

It is upsetting, and making the decision based on pain is upsetting. But the doctor has seen this before and isn't just blowing smoke up your ***. Just make sure you are informed - but only you and your doctor really know you and your body. Make the best decisions you can, trust the rest to God...

Thanks for taking the time to answer Jeszucs. so nice to know someone who's come out the other side.

Is the pain you have from the incision - that has to be pretty major in terms of what they cut? did they close you with stitches? is your swelling gone?

and yes i am worried about how long it takes to get back to normalish? i do a deskjob and could work from home for a while (assume that would be possibly with a laptop and cell phone??) then hopefully back in the office say 4 weeks (i shattered my kneecap 2 years ago so had 5 weeks off/working from home then - it's not going to go down well but i can't help it).

i also read about the vaginal option - which sounds awful! Think i should probably keep off the internet

S

Good morning, well it's morning for me! Yes I believe most of the pain is from actually the internal stitches. My outside incision is about 5 inches and healing nicely. That whole area (my skin) is very sensitive to touch still. It's the inside stitches etc. That are the source of most pain. The moving of intestines and stretching of muscles ... It is major. I have a total desk job and find it impossible to sit for more than an hour. I would not be able to work properly, and I found I was in too much pain and discomfort to work from home. I just wanted to rest and do very little. Your concentration will be affected because of the pain etc., I wouldn't even opt to work from home before 6 weeks. And then only minimal stuff until you know what you can manage.

I am finding myself bored, but cannot do all I want anyway, so I suck it up. The spirit ismwilling, but the body can't keep up!

The swelling is relatively gone, but extremely sensitive. I was not able to use the belly binder etc. I don't want anything too tight at all.

But everyone's different, and unfortunately you will not really know until you get there. Check the post op checkpoints and plan your life according to that. I find myself to be falling nicely in line with their timelines.

No matter howmthey do it, it's major. To be honest, I would assume the vag approach easier. That opening is already there!

Afternoon here! Well i see my doctor tomorrow to do the referral to the specialist gyne. I am not sure about wait times - i had heard in the UK 10-12 weeks from going on the op list (and i have to see the specialist before that could happen). I also have private healthcare so it could be brought forward if necessary.
I shattered my knee 2 years ago - so know what it is like to loll around at home, so many channels on tv and it's all rubbish!! But then it was more problems with mobility rather than pain itself - although that scar is 9 inches long so understand about incision pain. But i guess across your belly probably affects everything you do...I have this picture of me flailing around like a tortoise on it's back, with the stitches on the front and the fact that i can't use my right leg to stand up.
So on your checkpoints, at what point should this internal pain start to ease then? Is your doctor happy with everything?

Take care of yourself!

S

The internal pain slowly subsides as the weeks go by ... As you heal. I tend to be a slow healer, so it has taken 3-4 weeks for the pain to retreat. I took pain pills for almost 3 weeks, now take regular pain meds. (not prescription) everyone is so different though, you could be pain free in a week! Who knows....

My original surgery was in march, it was a 6 month wait time at that point! Totally sucked! But I got called early... In January. I was so excited that the end of my other pain was coming, I kind of forgot about recovery pain! I realize how stupid that sounds, but it's true. I kind of glossed over the 6-8 week recovery ... Well, it slapped me in the face hard!

I have 8 weeks booked off and I am at 4. I feel about half healed too ...

My first dr's appt is next week at 5 weeks. I haven't had any remarkable issues to call him about. I am healing, slowly getting more mobile etc. So I expect him to say all is well and that I will heal when I will heal and on my own schedule. I have spent a lot of time laying down and very little. Like 75% of the day is horizontal still.

I totally think I will feel twinges, pulling and have to be careful for about 6 months ....

A shattered knee sounds horrible! I am a runner and have a huge fear of hurting a knee.

All the best to you, ask lots of questions ...