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Will a Total Hysterectomy Help Scleroderma?


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12 replies to this topic

#1 InGoodHands

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Posted 30 August 2011 - 11:28 AM

I've been advised by my rheumatologist that a total hysterectomy may help with CREST. I'm wondering if anyone has experience with this and can give me some first-hand advice.

Patty

#2 Shelley Ensz

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Posted 30 August 2011 - 11:38 AM

Hi Patty,

Welcome to Sclero Forums! I'm sorry you have concerns about this and send my best wishes to you.

Please keep in mind that I'm not a doctor, and I have no medical training at all. As it happens, I haven't heard of this particular advice before; in fact, it sounds downright alarming to me.

I've certainly never heard that having a total hysterectomy would help with scleroderma, in any way whatsoever. Many of us around here have had hysterectomies (for other reasons) but still developed scleroderma.

The only thing I can possibly imagine is that you must be having some other problems for which the hysterectomy would be helpful, such as PCOS (polycystic ovary syndrome)?

Perhaps you could explain more? Meanwhile here are some warm welcoming hugs, just for you.

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Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 30 August 2011 - 12:06 PM

Hi Patty,

Welcome to these forums!

I agree with Shelley and have also never heard of this particular advice before. Is your rheumatologist a Scleroderma specialist as we do recommend that you consult one. Unfortunately many rheumatologists just do not have the knowledge or expertise to deal with this complex disease.

Do please post again and let us get to know you a little more. Here's a welcoming :emoticons-group-hug: to keep company with the one Shelley has given you!

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#4 InGoodHands

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Posted 30 August 2011 - 12:15 PM

Hi,

Thanks for your reply. I've had problems with heavy bleeding, I'm 53. I'm sure menopause is around the corner, but the anemia is significant and I ended with 2 units of blood last month because of a low hematocrit. There is no cancer. My rheumatologist did suggest that having no female hormones may benefit me, and of course as there is this anemia problem.

But I'm not all that convinced that having a major surgery is what I want to do. I thought if someone who had already had a hysterectomy could then tell me they saw an improvement in their connective tissue disease, it would be worth proceeding. I live in Oregon. No specialist close. Closest is Stanford. I wonder if I should go somewhere else.

Patty

#5 Shelley Ensz

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Posted 30 August 2011 - 03:51 PM

Hi Patty,

Nope, no improvement in connective tissue disease for me with a hysterectomy. I may be very wrong, I often am, but I think I heard a slogan one time about how sometimes connective tissue disease (CTD) symptoms tend to be lupus-like before menopause, and more scleroderma-like after menopause. So for that reason alone I sure wouldn't rely on the hormone changes making any reliable difference.

What would matter is whether your other symptoms could reasonably be expected to improve.

As for me, I'm overjoyed that I had the hysterectomy when I did and it was probably the single best thing I ever did to improve my health at that time -- but I was having severe issues for years and the resulting fatigue was so bad that I would go to bed on Friday night and get up on Monday to go to work, for months before surgery. It was also decades before I was ever diagnosed with scleroderma.

Besides, if you have a total hysterectomy and then need replacement hormones, you're still getting hormones and nothing has substantially changed.

Please don't do it only on any sort of bet that the scleroderma would improve -- unless a "real" scleroderma expert advises differently. In which case we really want to know, we're all ears. However, I think the anemia and blood transfusions alone would be a huge thing to get rid of by having the surgery, if you ask me.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Amanda Thorpe

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Posted 30 August 2011 - 04:01 PM

Hello Patty

Welcome to the forums! I am not sure how removing your womb and other bits and bobs will help your scleroderma? If you're not seeing a scleroderma expert you might want to consider doing so, even if they are far off.

Take care and keep posting.
Amanda Thorpe
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#7 Jeannie McClelland

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Posted 30 August 2011 - 04:28 PM

Hi Patty,

A warm welcome from me too!

I had a total abdominal hysterectomy in 2002. My problem was multiple prolapses and I'd already had 2 unsuccessful pelvic slings to address the bladder issues. I was diagnosed with scleroderma in 2006 (and at the same time with pulmonary hypertension and pulmonary fibrosis). I guess I'm like Shelley. The hysterectomy helped with the problem it was addressing but certainly did nothing to prevent or slow the onset of scleroderma.

I think (and I'm no doctor either) that your doctor may have found reference to some very OLD opinions in the medical literature tying scleroderma to the female hormones. Nothing ever came of that and as far as I know, there is no current research in that vein.

There are much better means of having a hysterectomy than the 'open' surgery I had - mine was more dramatic (cue my hubby going Eewww! when he saw the size of the bandage :lol: ) and trust me, the laparoscopic surgeries are great. Shorter healing time, less discomfort (although I didn't have much pain at all), less time in hospital - better all around.

I think if I were you, I'd want to maybe get a second gynecological opinion and definitely talk to the surgeon who would do the operation. And maybe make the trek to find a scleroderma expert~

Keep posting, we'll look forward to hearing from you.
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#8 Snowbird

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Posted 30 August 2011 - 07:29 PM

Hi Patty,

A warm welcome from me as well. I can't imagine that in my wildest dreams either (that a hysterectomy could possibly help with CREST/scleroderma!). I agree with the others and also encourage you to see a scleroderma specialist and any other specialists needed (if possible) to help you with the separate health issues you are having. It seems that each individual health problem requires its own specialist attention to me as well. I do hope you keep us updated. Take care.
Sending good wishes your way!

#9 InGoodHands

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Posted 01 September 2011 - 07:29 AM

I want to thank all of you ladies for your input. It is remarkable that you have taken the time to answer my questions, and you HAVE. First hand knowledge is always better than theories. I have not yet decided to proceed. I am still weighing the issues. I am so close to menopause (likely) that it seems if I can just postpone it for a year, I might be over the hump. I very much appreciate your help in ferreting out whether there was a connection with my hormones and the sclero. Another option is taking hormones to stop the bleeding. My rheumatologist strongly recommended against them, but from what you are saying, that is an old school theory. Hmm... Perhaps I should change rheumatologists?

It is difficult to decipher all the clues. I am very thankful for all of your help.

#10 marsha

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Posted 01 September 2011 - 09:39 AM

Patty,

I have to tell you I have been battling all kinds of "female" problems and wondered if they didn't go hand in hand. After many tests and tests and tests...I finally had an IUD placed, my Gynecologist felt that the menopause is right around the corner and that this 5 year IUD would help and hopefully when it's time to remove I will have gone through the menapause. After 6 months of discomfort and misery I think I'm finally on the road to feeling better. I along with the others have never heard of a hysterectomy for a solution. I have been seeing a Sclero specialist who is working with my Rheumatologist and he told me at my last visit that its not our Rheumatologist's faults they just don't have enough knowledge with Scleroderma to make informed decisions. I also suggest to you before making any decisions to see if you have a specialist close to you so that you can understand everything, the Lupus like symptoms before menopause VS the sclero symptoms after totally makes sense. I feel like I have more Lupus like symptoms and was convinced the doctors were wrong when they diagnosed me with Limited Scleroderma. Welcome to the forums I am sure you will find this place a wonderful place for bouncing fears and questions off of...the people here are AWESOME!!!

Hope you feel better
Marsha

#11 Sweet

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Posted 01 September 2011 - 10:47 AM

Hi Patty,

Just popping in to give you a great big hug and welcome you to the Sclero Forums. :emoticons-group-hug: :flowers:
Warm and gentle hugs,

Pamela
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#12 JustME

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Posted 12 September 2011 - 10:37 PM

It (a hysterectomy) can help with anemia and other pain like endometriosis. They are finding that Scleroderma is might be caused by the mixing of fetal cells in the mother's blood. See Fetal Cells and Scleroderma, but they don't make things worse if you already have Scleroderma

I don't know why he is saying that unless you are having other problems. if you are done having babies then I myself wouldn't hesitate. If I still wanted babies, I wouldn't let a doctor's opinion stop me from having them.

#13 debonair susie

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Posted 13 September 2011 - 04:30 PM

Hi InGoodHands,

I can sympathize with you, having lost so much blood, that you required blood transfusions, due to low hematocrit.

I think you are very wise to weigh your options and get feedback, as well; I would be inclined to check with at least one
gynocologist, on this particular topic, whereas it's more their field of expertise, whether or no a complete hysterectomy
would be recommended.

Because I bled 21 days/month for several months (cause: prolapsed unterus), I opted to have only the uterus removed (rather
than have it suspended) and to keep my ovaries, as there was no problem with them.

I was done having children and I never looked back with regret.

Again, I totally support your giving this alot of thought before making a final decision.

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Special Hugs,

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