Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Endometriosis


  • Please log in to reply
6 replies to this topic

#1 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 01 March 2007 - 05:46 PM

Does anyone know if sclero and endometriosis are related? I went to have an endometriosis biopsy today but the Dr. is having me wait until she can discuss it with my rheumatologist because of the fact that I'm taking Cellcept and am at increased risk for infection.
I was glad I guess, that she was not risking it but two hours later, I just wanted to get it over with.
Just wondering if sclero can cause this.
Thanks,
Jennifer

#2 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 01 March 2007 - 06:44 PM

Hi Jennifer,

I don't know but I have always wondered the same thing.

I was diagnosed with probable endo when I was in my late teens. I had horrific menstrual cramps that put me completely out of the game every month for 2 - 3 days and ended up in ER once it was so bad. doctor suggested I go on the birth control pill to aleviate symptoms and I felt cured!

Then I had trouble getting pregnant in my early 30's. My doctor found some tissue growth around my fallopian tubes and removed it laporoscopically. He said I also had a twisted fallopian tube which he "straightened out". When I left his office he said, "No sex for 2 weeks." But when I returned for my post op 6 week checkup, I was already 5 weeks pregnant! :rolleyes: Sorry - a little off the subject there but had to tell the happy story.

Anyway, when I thought I had lupus I wondered about a connection because there seemed to be a lot of people on The Lupus Site also with endo and asking the same questons. Now with my sclero diagnosis. I wonder even more.

I wonder if endometriosis is or could be autoimmune?

I learned that it could actually show up in places besides the uterus. I have heard of it being found in the GI tract.

Well enough of my rambling. I hope your biopsy goes well and that you can get it done and over with soon - and that it's negative!

Take Care,
Barefut

#3 Guest_Sherrill_*

Guest_Sherrill_*
  • Guests

Posted 01 March 2007 - 07:22 PM

Hi Jennifer,

I found this article on the main ISN website.

Pathogenesis of endometriosis: natural immunity dysfunction or autoimmune disease? Recently, endometriosis has also been considered to be an autoimmune disease, owing to the presence of autoantibodies, the association with other autoimmune diseases and recurrent immune-mediated abortion. These findings are in apparent contradiction with the reduced cell-mediated natural immunity observed during the disease. PubMed. Trends Mol Med 2003 May;9(5):223-228.

Also on the same page there are some patients' stories. You will find them at: Autoimmune Diseases: Endometriosis.

Warm hugs,

#4 Patty

Patty

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 02 March 2007 - 01:42 AM

Hi Jen,

What a great question. I had endometriosis and had 3 surgeries to do a complete hyster. ( they took me out in pieces over 3 years) at any rate, it was after this that I first started to get sick. We will never know if the two are connected in my case but we wonder all the time. I know that before the surgery I was in so much pain I would be walking and fall to the floor in pain that would take my breath away. No fun! I hope that you get answers and have done what is in your best interest.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 Clementine

Clementine

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 02 March 2007 - 03:23 AM

Thanks everyone. I do not have any painful signs of endometriosis, other than that I have not had a normal cycle in probably 10 years. This is the first gynecologist that wants to figure out why. I'm 39 so going into menapause at 29 does not seem right. Also, had some abnormal cells on my last tests, so got to go that route too and do more tests for that.

Has anyone NOT been able to have a biopsy due to sclero and risk of infection? ######, seems like there's not a lot one can do if we have it ....who wants to go under with sclero AND Interstital lung disease. I hate the way sclero seems to effect EVERYTHING. We have to take it into consideration not only in daily routine but every little thing we do medically. Blaaaahhh. My mood today is cranky.

Thanks,
Jennifer

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 02 March 2007 - 04:33 AM

Hi Jennifer,

I may be wrong (I often am! And I have no medical training at all, so take all this with a grain of salt and check with your medical team) but I think it's more the Cellcept that is causing the worry about infection from a biopsy, rather than scleroderma itself, because Cellcept is an immunosuppressant that increases the chance of infection. So generally it's a good idea to avoid optional procedures that might inspire an infection, and they may want to weigh the symptoms and potential causes more carefully than they would with an entirely healthy person.

I had a hysterectomy, which cured endometiosis with many adhesions, decades ago. I may be wrong, but I don't think irregular periods are a specific symptom of endometriosis. In my experience, it was a very painful and longlasting condition.

There are many causes of irregular periods, including things as simple as stress, weight loss, and vegetarian diets. You may want to make sure you have explored all the possible causes with your doctor, and all symptoms of endometriosis, before pursuing a biopsy. It's usually diagnosed with laparscopic surgery...but still, you would be at somewhat greater risk of complications, due to the Cellcept.

See our Autoimmune Diseases: Endometriosis section for a little bit more info, including 3 personal stories.
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.

#7 Clementine

Clementine

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 02 March 2007 - 05:07 AM

Yep, I actually do realize the increased risk for infection is because of Cellcept. I do not have symptoms and do not plan on having kids, so I think I need to talk to the dr. more....why do need to have these test? Can it be harmful? I am thinking that because I'm borderline anemic (sclero related) that could be one reason. If I were in pain it would be different.
I do need to have the colponscopy definitely because that could be a problem, but I'm thinking I may decline the biopsy fo now.
PLease, if anyone has any thoughts, please let me know. I did read the sclero board in regards to endo. but still want opinions.
Thanks.
Jennifer