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Pain is spreading? Pain is spreading?

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Unread 01-18-2005, 04:20 PM
Pain is spreading?

Hello everyone
I haven't posted in a while but I pop in and read up on articles whenever I can find the time. It's amazing how quickly you find yourself back in the old whirlwind lifestyle. Suddenly, yourself and your health is near the bottom of your list of priorities! I don't know now how I ever found the time out for the operation and recovery!
It is 14 months or so since my tah/bso for endo and suspected cander of the uterus which turned out to be ande (I think, I hardly ever fully understand him). I have ventured into the hormone jungle hesitantly as i have instantly felt worse with estrogen replacement - whether it were patches/cream, bio-identical. Always I was afraid of the endo returning. I have continued the round of docs since the op. First I saw the urologist for bladder probs, medication has helped but it's still not right! But he confidently tells me that my pain is not bladder related and referred me to another doc who had a good look around the bowel and stomach areas! Nope! Nothing wrong in there either! a CT scan, follow through barium and a colonoscopy confirmed his view. So I am now referred back to original gynaecologist! I bet he's looking forward (not) to seeing me again. I had a sneaky feeling he felt I was some sort of minor irratation to him! So. regardless of what he thinks, I'm not looking forward to seeing him again either! Last time I saw him, he made me feel that I shouldn't still be complaining of pain after the brilliant surgery he had performed! I'll have to find a way of boosting the poor fella's ego before I tell him the pain is spreading!
And that brings me to my question!
The pain was initially low down in right pelvic area. It is definitely spreading upwards and around my side (hip area) up to my lower back. It is so painful, it can really floor me some days. I have had to reduce my hours to part time and we are struggling financially because of this (I have a very large family at home) and my dh couldn't work any harder or longer than he already does - I fear he will give himself heart failure. And all for what?
I am beginning to wonder why we are all flogging our guts out and just to struggle through each day, is it worth it? I know but I am very depressed by it all too. All my family members have major issues to deal with (a very long story!) and they take all my time and more up.
If I didn't have this pain all the time, I'm sure just by managing better, my mental and emotional state will impove. I just hang in and hope and pray for us all.
I would appreciate any ideas on the pain.
Thank you all for being there for me. This site really helped me in my early weeks of recovery.
Hugs to all

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Unread 01-18-2005, 04:25 PM
Pain is spreading?

I'm sorry that you're having to deal with pain issues. I do know how you feel. If you don't feel like your gyn is going to listen or be of any help, perhaps you could find a new gyn. I've been to many different docs since the hyst, and no longer settle for a pat on the head or a doctor not listening or believing my pain. You shouldn't be a bother to the doctor, that is what we pay them for!
Unread 01-19-2005, 09:09 AM
Pain is spreading?

I thought the same thing as ((KIM M)) when I read your post. Why go back to a doctor that you have issues with?

There are some fantastic, caring docs out there who will validate your pain, give you treatment options and then support you in your choice. I promise ... I have one of those now and its a very comforting situation to be in.

Ask your friends who they see and listen for comments like "he's the greatest" or "I just adore her" or something along those lines and you'll know you are hiring the right gyn for the job (yep, that's right ... YOU are the boss ... and that's a quote from my gyn, BTW).

Hang in there and don't settle for mediocre care.

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Unread 01-19-2005, 04:36 PM
Pain is spreading?

Hello and thank you Kim and Michelle for your quick replies to my post.
I forgot to say that I am in the UK and our health system is a bit more complicated in the selection of a consultant!
Also, you wait ages for your appointment!
The pain has been easier today. Maybe it was getting it all off my chest that helped! I also had a good cry :cry:
I forgot to mention that I am also in surgical menopause and sometimes the hot flashes are so bad. I am also so tired as I am not sleeping too good. I wake up through the night soaked. I know that it's what is expected, but it's really wearing me out.
Thanks again - I don't know why I didn't post earlier, it does help to "talk" doesn't it.
Hugs to all

Unread 01-20-2005, 10:56 PM
Pain is spreading?

Hi Auntie Sue,

I agree with the others, I wished you where here in the u.s. if you can get another GY you should. How ever, have you thought about talking to a cardiologest? With the amount of stress you are under and your sugery not realy that far behind you. You may have some thing else going on.
I was lucky that my blood clot showed it's self with in two weeks of my surgery. Your night sweats, and the numbing of your leg May have something to do with your cardiovasuler system. That is how I felt before I went to my GP, with an absess on my neck, where they found the clot, and stoped the stroke I was having right then. I hope you get the care you need. Don't let your docters blow you off.
sincerly Karen hart
Unread 01-21-2005, 03:17 PM
pain increasing

Dear Auntie Sue,
I totaly can relate to you. I had my op in June of 2002. I have suffered with ongoing & increasing pain since inmy lower pelvic area which doubles me over & spreads to my hips & upper legs. I have been poked & prodded for the last 2 years & find it very hard to cope. I have 3 small children, who I feel very sorry for as most days I am bed ridden, either with the extremity of my pain, or exhaustion from being awake most of the night suffering.
I have just been refered to a pain clinic, as my meds are no longer working for me as I have been on them for so long. I am hoping to get some much needed help. My Dr said that I will probably have to now go on morphine, which I will get from the pain clinic. It scares me to be on such a strong med, but I really fel I can't cope any more after all this time.
I agree that you should change Dr's. It is bad enough what you are going through without feeling that you can't copletely be honest. I've changed Dr's a few times. I was told by one that it was in my head, even though every three months I would be spoting. It turned out that I had 4 staples left from my surgery, which may have caused nerve damage - hence my pain.
Please don't lose hope, & maybe it is time that you thought of yourself, & what your needs are. Your family will have to learn to cope. I am there when someone needs me, but you have to know the difference between real need, & what your own are. It is really hard when you are a giving person, but if you don't look after yourself, you won't be able to look after anyone else. I have an answering machine. I have explained to everyone that sometimes I just don't feel like talking, it is nothing to do with them, it is just how I am feeling, & tell them that I WILL get back to them when I am feeling better physically, (& emotionally).

It is a long road, but I am just thankful for this site.

God Bless

love Astrix
Unread 01-22-2005, 07:06 AM
Pain is spreading?

Hi ((((Sue)))) I do know how you feel: I'm in where we have similar problems as in the UK. For one thing, in order to see a specialist we need a referral from our GP and we're running terribly low in the GP department!!! Talk about a catch 22 situation. We also have to wait months for an appointment, which makes it all even worse!!!

I also know how it feels to have undiagnosed pain: for years now, I've been having pains in just about all of my joints. While arthritis is strongly suspected, none of the tests have ever come back positive... so, so far, treatment has been anti-inflamatories... yep, I'm not pleased at all with those being, gradually, taken off the market, one-by-one

As the other have said, the key is to keep asking and to keep reiterating that the pain is real, that it's not going away and that no is not an answer. I know: easier said than done!!!

BTW, one thing that I've learned through the years is that pain can maskarade as one thing and be caused by something else. For instance, way back in the 80's, a persisting and invalidating pain in my right calf turned out to be caused by a problem behind my knee cap: it took months, and lots of frustrating tests, to find out what was causing the pain. Thankfully, I was persistant and, I guess to get me off his back, my GP finally referred me to an othopedist... who found the answer in just one visit!!!

More recently, since about 4 or 5 months after my hyst, I've been having these pains in my lower right abs, just where my ovary now sits. Since it's also cyclical and the worse of the pain is during "that time of the month", I was convinced it was my ovary giving me grief. Turns out that the pain is caused by spasmic bowel and that it the reason it's worse at that time of the month is because it's all, somehow, link to my on-going IBS issues and that PMS can be a trigger for IBS flare ups.

All this to say that you should continue to investigate other possibilities as to the source/cause of your pain. It may even have more than one cause.

Take heart and hang in there: we'll be with you every step of the way, in your quest for relief. Please do keep us posted.
Unread 01-22-2005, 02:03 PM
Pain is spreading?

Hello - Karen, Astrix and Dany
Thank you so very much for your replies. I wondered how you all coped with managing the day to day things!
I looked up cardiovascular stuff, and although I take propranalol for an assault I suffered three years ago (left me with spondylitis (sp) and a stammer.) I was knocked clean out for the first time ever in my life! They say it is a whiplash injury and that is why my neck hurts. Even after physio its constant pain. I can hardly turn my head some days. And this is on top of the sleepless nights, mad days and constant abdominal pain. I do sound a bit of a whinge and I hate it when people ask me how I am. I don't know what to moan about first! Instead I say "I'm getting there, I think!" Well, we're on the road to somewhere aren't we? The road to complete recovery, or at least some comfort.
I have many family problems to deal with on a daily basis. Opting out just isn't an option. Things will fall to pieces!
To top it all today I woke up with a septic throat and a temperature. I haven't got time to come down with the flu!
I don't know how to manage my mood, my GP prescribed me Venlefaxine (Effexor) early 2004, gradually building them up to 150 mg a day. They did help with the hot flushes but I suffered extreme dry mouth, less libido then I had already (if that was possible!) and no appetite. Strange the no appetite bit, I hardly ate and I still didn't lose any weight! I don't think it helped with the moods either.
I was reading up on this medication on the web and came accross some scary posts re effexor withdrawal and so on my next visit to the GP I showed him the printouts. He didn't even glance at them! (This is my GP not the consultant I mentioned in my post, he is okay but obviously knows bugger all about surgical menopause, or much about hormones issues at all! And he trained in gynaecology! ) He more or less said "do you want me to treat you or not!" I tried to explain about the risk and he replied that life was full of risks blah blah blah! I decided to wean myself off them. The withdrawal was not pleasant. On my next visit I was just about to explain about the withdrawal and he stopped me before I could finish with the information that he wasn't allowed to prescribe the drug any longer! And he said "it's a shame because I liked that drug!"
You see what I am up against!
Today the pain isn't too bad, there are few days like this now though. I take advantage of them and get more things done and end up suffering more the next day. It's a vicious circle. I feel like I am trapped in a whirl wind and I want to get off.
I have nothing but awe and pure admiration for you ladies who have been on this road for so long. It's amazing, the strength of you. I don't know if I can do this for that long. I can't bear the thought of being like this for another year. Surely there is a better way?
Thanks again for your replies, you are right about the site helping you Dany. Your replies have given me a little hope. I would love to be able to afford to give the site more money but it's so hard financially for us right now. And I dunno about you lot but the tsnuami appeals got every spare penny I could find last month too! I think about such disasters like this and watch the people suffering and I end up beating myself up more for being such a big whimp, surely I should be pleased with what I have and I shouldn't be so ungrateful. Truth is, I'm not ungrateful at all. This is so hard. :cry:
Big hugs to you all


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