If it isn't one thing its another - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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If it isn't one thing its another

uknlv profile image
4 Replies

Well I just got back from an appointment with the Gynaecologist and although it has been known that Sclero can cause early menopause, no I am not one of the lucky ones going through early menopause

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! 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. Darn my body and lungs anyway, I want life back to where it was simple and Mom and Dad made all the decisions hehehe

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uknlv
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4 Replies
Anteater profile image
Anteater

Oh UKNLV, I would seriously have to think about this - dont think I would have the coil, but having it done in outpatients under local - have they ever had to have this done - I bet not - !!! Easy for them to say but what about the way you feel (oh of course that does not matter) Can they sedate you, that may be a better option than anesthesia ?

Heleno profile image
Heleno

Hi, I just read your comment ref sclero can cause early menopause. I have been suffering with Raynauds for about 10 years and have read up on the symptoms of scleroderma and didn't find anything re the early menopause. I didn't feel like I had symptoms of scleroderma apart from always feeling quite tired, but recently my doctor decided to send me for some blood tests that showed some abnormality with my autoimmune system so I was sent to see a specialist from rheumotology who has also referred me to a gastroentomologist due to some abnormal result on my liver function. I am 45 and have gone through the menopause (started going through around early 40s) so I am now self diagnosing & probably coming up with a totally wrong diagnosis (trouble is my appt isn't until June).

With regards to your options, if they are concerned that you may not wake up from the anesthesia it's a no brainer really, go for the outpatient option, I know it's easy for me to say!! Have they not talked to you about removing your uterus all together? Although this would obviously involve a stay in hospital so may be out of the question. Good Luck with whatever you decide to do.

Mcgruder profile image
Mcgruder

I had a biopsie done under a local a few years ago, and i can honestly say it was the most painful thing i have ever had done, it is not something i would ever like to have to repeat.

Rach18 profile image
Rach18

Make sure you're armed with the full facts UKNLV before making any decisions, I really sympathize with you as I'm also debilitated for several days every month and it's very frustrating, makes me feel like going to the GP and demanding a hysterectomy but I know they wouldn't give me one!

Heleno's comments above ring a lot of bells with me, I've been diagnosed with Raynaud's for around 20 years but have recently been feeling tired all the time, my latest blood tests have shown that some of my liver enzymes are raised. I've also started with some symptoms that I'd associate with early menopause - sweats, irregular cycles, etc. Perhaps I'm adding two and two together and making five but all these things do seem to be connected in some way.

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