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Biomarker for Diffuse Scleroderma skin has been discovered!


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It is always something....


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#1 uknlv18

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Posted 18 April 2011 - 09:02 AM

Hi everyone

Well I just got back from an appointment with the Gynaecologist and no I am not one of the lucky ones going through early menopause :emoticon-crying-kleenex:

I went due to problems with bleeding and pain that have been ongoing for several years, after many pills and hmmmm's we dont know what to do, they have decided I may need surgery. 20 years ago I had the lining of my uterus removed because of endometriosis and bleeding and pain and I am one of the lucky few that have had portions of it grow back! Weeeeeeeee So now they want to insert a uterine coil or perhaps permanently remove the lining of my uterus. I am 47 and why they just won't take the wretched stuff out eludes me!

But due to my many problems arising from my Scleroderma, they are very concerned about how I am going to react to anesthesia, they are afraid I may not wake up. So have been given several options that are dependent on results of various assessments by anesthesia and other doctors.

Option 1 is to go in and have surgery where they will look around and see what is going on, take several biopsies. Because of my first surgery to remove the lining, scar tissue has formed and has pulled my uterus in half, they want to cut this so that my uterus goes back to normal and insert the coil. I will then be put in ICU to be watched for several days to make sure my lungs start working back to normal, well what is normal for me.

Option 2 is to have everything done as an outpatient, which means they will use a syringe and squirt some local anaesthetic into my uterus, wait for a bit and hope that it numbs things enough that I won't be in too much pain while they take the biopsies and do the cutting. I have had many biopsies in the past while they were trying to sort out what was wrong with me and had one 2 years ago here, where they discovered the condition of my uterus. And they HURT!! I have withstood a lot of pain in my life, even before the Sclero, I have 4 tattoos and have had numerous tests done that I was told don't worry it won't hurt that bad! But something tells me that cutting scar tissues isn't going to be up there on the fun things to do this summer list.

Part of me just thinks to let it go, I will go through menopause eventually and have lived with the pain and heavy bleeding for about 2 years now, and since I no longer have to worry about work, I can lie in bed with loads of pain killers and sleep until things settle down. Part of me says lets get it over with and hope it is all fixed and I am not debilitated 7 - 10 days every month, but I am more than a bit scared. I remember the pain of the biopsies and am thinking the cutting of the scar tissue is going to be worse. But I also don't want to go through the hassle of an in-patient stay and all that. I have a BIG aversion to hospitals and am more than a bit OCD about germs that are there! :lol: Having to share my room with 6 or more people just makes me ill thinking about it.

I can always hope that the outpatient option will be really quick and won't be too bad. Shame on my body and lungs anyway, I want life back to where it was simple and Mom and Dad made all the decisions hehehe

Jean

#2 Jeannie McClelland

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Posted 18 April 2011 - 09:15 AM

Jean! Ask about a spinal or epidural block for pity's sake. Think about all the Cesarean births that happen every year with Mum awake but feeling no pain.

I've had more endoscopies under general anesthetic than I can count plus several hours having a fundoplication, also under a general anesthetic. I have both pulmonary fibrosis and pulmonary hypertension. Now I know each of us is different and I have no idea of the state of your lungs, but honestly, it sounds to me like someone is giving you a lot of very bad information. You need to talk to your doctor(s) again.
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#3 Sweet

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Posted 18 April 2011 - 10:17 AM

Jeannie, you beat me to it! Absolutely, an epidural, should solve the problem!

Jean, I'm really sorry you're having these problems. I had very similar issue back in 1994 and ended up with a hysterectomy.

Positive thought coming your way! :emoticons-group-hug:
Warm and gentle hugs,

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#4 Joelf

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Posted 18 April 2011 - 12:31 PM

Hi Jean,

Oh dear, whatever you decide, none of it sounds very pleasant!! :sorry:

I've only ever had a general anesthetic once and that was before my lungs were affected by Sclero (ironically it was to remove fibroids ;) ) but I suffered no ill effects from it. As Jeannie says though, different people do react differently to the same drug.

The epidural that Sweet and Jeannie suggest sounds a good idea, though, especially if you're worried about a general anesthetic. I think you should definately go back to your gynaecologist again and make sure that he really understands the anxiety that you're experiencing. You certainly should not have to put up with dreadful pain!

Another :emoticons-group-hug: coming your way to keep company with the one Sweet's given you!

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#5 Snowbird

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Posted 18 April 2011 - 03:39 PM

Well Jean, I can't beat that idea...sure sounds like the way to go from Jeannie and Sweet, epidural is certainly worth discussing with your doctor(s)!
Sending good wishes your way!

#6 Amanda Thorpe

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Posted 18 April 2011 - 05:11 PM

Hello Jean

I agree with Jeannie, sounds like hokey information to me! Firstly there's much more they can do to control your pain than what you have so far been offered. I can't remember whether you're under a scleroderma expert or not but what about having your rheumatologist explain that you can have anesthetic, could your doctors be over over reacting?

Last year when having my pacemaker/defibrillator implanted they had to give me very heavy sedation so they could test the defibrillator. At the time I had heart failure with left ventricular function down in a year from 50% to 34% (55 to 60 is normal) and there were no concerns. I know sedation is different from being put under but still...

Either way you need a second opinion!

Take care.
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#7 Lynnie

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Posted 18 April 2011 - 06:38 PM

Hi Jean

I have to say as a retired mid-wife these doctors of yours are making hard work of this issue for you!! just because we have sclero does not mean that other health issues do not come along that need attention,and as such should be sorted out and a way found to get around them! a good anaesthetist should be consulted to assess your sclero and what he/she feels can be offered to you so that a procedure can be carried out safely and painlessly without compromising you.

I'm with the other girls: ask for an epidural or spinal block..they are very effective. My mum in law had all her finger joints replaced with one!! She is 86 and was totally up for it as she has heart problems and a pacemaker; she's going in for a badly ulcerated toe to be amputated this next week under a block!!!

My friend had a hysterectomy under one as well, shes got C.O.P.D with very severe asthma and like you, was suffering in the gynae dept and she said it was the best day's work she had! If you've had enough Jean, try asking for options other than what they've offered you and do what you feel is going to benefit you most, if they will not give you the option of perhaps a hysterectomy or the like ask for a second opinion ok, do not suffer when you perhaps do not need to; menopause can last another 10 years at the age you are now. Do you really want to suffer like this for all of them....I know I would not want to if it was possible to sort the problem out!

Good luck and let us know what happens, ok,
Hugs
Lynn

#8 uknlv18

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Posted 19 April 2011 - 07:20 AM

Thanks Everyone,

I feel a bit silly not thinking of these things! At the time I was just sitting there like a deer in the headlights! Part of it is because I am overweight as well, but there are ways around it. The Gynaecologist seemed to panic when I told her I had Scleroderma and what not. She is going to be consulting with a more senior consultant, as she was a locum so probably isn't there for long anyway, and is giving my notes to the aneasthetist. One can only hope that they will look at everything and come up with the right choice.

I had a colonoscopy last year and was given sedation and I didn't feel a thing and was awake and fine through the whole procedure. I am going to insist on something like this or if they feel I need to be under aneasthetic then I am going to suggest an epidural. I am by no means squeamish and a bit of a ghoul as I love to watch when they do things, freaks some doctors out :lol:

Thank you all for your support and the smack up the back of the head to stop me panicking and make me think of options! :emoticons-thankyou:

If worst comes to worst, I have an aunt who is a retired sister and I will bring her along to make them see some sense!

:emoticon-hug:

Jean

#9 Joelf

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Posted 19 April 2011 - 07:29 AM

That's good, Jean; I'm glad that you're feeling a bit more positive about the whole procedure. :emoticons-i-care:

Let us know what you decide, won't you?

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#10 Jeannie McClelland

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Posted 19 April 2011 - 07:52 AM

Hey Jean, I'd take your aunt along anyhow, just for the fun of it. The motto in my circle of friends is "Don't mess with old nurses!"
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#11 debonair susie

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Posted 19 April 2011 - 05:41 PM

Oh Jean, I am so sorry to hear of all of this...

(By the way, I had typed out a nice little ditty right after you had posted this thread and had just a couple of more things to type and was going to 'Add Reply' and it was GONE...into thin air!!! I apologize for not re-doing my message, but I had to sign off)...

Anyway, you beat me to it! I had the "Twilight Sleep Method" (typed out in my "other message" :wacko:) and believe it would work Swimmingly, for the purpose of putting you to "sleep" during any procedures that need to be done for you!

OH! You may be a bit of a ghoul, but you're "OUR :emoticons-line-dance: ghoul"!
Special Hugs,

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#12 susieq40

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Posted 19 April 2011 - 05:56 PM

Jean,

I feel your pain. I too have had gynecological problems, and they won't touch me because of my lungs. My body has decided to go into menopause anyway, but they CAN do a hysterectomy through the vagina, just depends on doctor if they feel like they can do it...and they can do it with an epidural.

I would say if you're going to go through that much pain and effort, just take it out...but that's just my opinion. I've had too many surgeries to count and they have many options for anesthesia(sp). Good luck, and we hope all goes well!!

HUGS HUGS HUGS.... remember we are our own best advocates...get a second opinion if possible! :)

#13 marsha

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Posted 21 April 2011 - 08:08 PM

I have had tons of trouble with my periods for about 5 years now, this past December they ended up doing a DC and placing Mirena. It took 3 solid months but I have to say, It has worked for me. Has that been an option that has been discussed by your gyno? I would also opt for the spinal, or at least a light Mac, where you are conciously sedated.. Good luck with everything, let us know how everything works out
Marsha

#14 uknlv18

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Posted 25 April 2011 - 06:17 AM

Well I wanted to update everyone with my decision. I have thought long and hard about this and have decided to just let things be for now. I am not working so the heavy bleeding and pains are not as big of an issue as they used to be, and I have, touch wood, gone two months now with nothing but a little bit of cramping. Yippee!!

Thank you everyone for your support and good suggestions, I am so glad I have you all to whinge to and to make me see other ways of looking at things!

Having a terrible time with my left hand at the moment, it seems to be getting really tight and causing bad cramping. Sigh as I said it is always something. But I have started a new diet and am even getting in some exercise, so all is not lost. I may even be able to do the fast happy dance soon!

:emoticons-line-dance: but for now its still the slow one :happy-dance:

Hope everyone is as well as they can be and enjoying the rare sunshine here in Jolly Ole England!

Cheers
Jean

#15 Joelf

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Posted 25 April 2011 - 07:22 AM

Hi Jean,

Thanks for the update. I can see your point; you obviously don't want to have any more surgery than you have to......I tend to be a little bit of the "wait and see how it develops" school of thought myself, (particularly with the animals! ;)) depending on the problem of course, unless it really is urgent and must be dealt with straightaway.

Hope you're enjoying the holiday and this (amazingly!) very unseasonal hot weather we're having!

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