CIDP and Endometriosis

Hi Lisa, I had stage 4 endo, I had no idea I had it until after my total hyst was finished. At which time the pathology showed it along with immature ovarian cancer cells. I originally had the surgery due to an apple size tumor on my ovary. I would def look into all your poss treatments. There really needs to be more testing for woman’s reprod diseases. Take Care.

Endometriosis is an auto-immune disease too. Most people with 1 auto-immune disease end up getting more.

Have you tried going on the pill to control your endo? I hear that it works well. It might make your monthly CIDP pains more bearable as well.

I would NOT recommend the Lupron shot. I took it myself for 6 months & had almost every horrible side effect listed from extreme leg pain & a 60 pound weight gain to memory loss & my hair falling out. After 4 months on the shot my endo came back & I had to have another surgery to remove it.

There are about 10 endo specialists scattered around the country. If you could find one & get to him/her that would probably be your best bet. There’s a surgery called excision that has VERY good results. It’s where they cut out & remove ALL the endo (root included). 80% of patients do not have re-growth of endo after that surgery.

There are also dietary changes that you can make. Some people (myself included) have eliminated or greatly reduced their dairy intake. That does take away some of the endo pain. Weird, I know.

A good place to meet other people with endo is at the endometriosis board on WebMD. When I was first dx’d the women there offered me great info.

Here is the link: (cut & paste) [url]http://boards.webmd.com/webx/Core%20Topics/Folder%20Building%20Area/Womens_Health/Endometriosis%3A%20Support%20Group/?14@822.HB4LaOxi0yM@[/url]

Hope that helps some.
Kelly

Please don’t go on the pill for your endometriosis!!

While I don’t have endometriosis, I have polycystic ovarian syndrome (PCOS). Due to the pcos, I’ve been on the pill for the past six years (without it, I won’t mensturate and run a serious risk of building up cancerous cells, not to mention other fun pcos complications.)

Now, with all of that seriousness in mind, I was recently taken off the pill (thanks to my VERY fantastic nurse), as apparently IVIG an the pill are contraindicated. Being on IVIG and birth control increases your risk of thrombosipenia (sic, basically thrombosis) to an unsafe degree. I was taking both of these together for 16 months, and I’m really very lucky that my new, [I]female[/I], nurse caught the problem. For whatever reason, my endocronologist, my neurologist, and my rheumetologist failed to catch this problem. I can only guess that male doctors fail to recognize birth control as medicine (the alternative, that a major medical oversight was made, is too scary.) She called several of her GYN friends to confirm, and yes, all agree the pill + IVIG = bad news.

You already have enough medical issues, don’t add this one to the mix.

Dana – GOOD ADVICE! I would have never even thought that you couldn’t take the pill with IVIG.

I also have PCOS & I’m not taking anything for it currently. What are you doing for your PCOS? I’m just curious because I need to get back on something but I just don’t tolerate birth control pills well.

Kelly

Kelly,

I know, it’s suprising, isn’t it? I’m very lucky to have recently changed to this new nurse, she’s fantastic.

As of right now, I’m not doing anything for my pcos – which is unfortunate because after 4 months of not being on birth control, some of the symptoms are starting to come back. (Not to mention suddenly not having perfect skin! I started birth control only two or three years after puberty so I’ve always have clear skin – what is this nonsense!)

However, my endocronologist said we might start metformin in january if things continue to be an issue. I guess that’s the next line of pcos medication if you can’t do birth control.

Dana

Dana – Good luck with the Metformin. It works for a lot of people. I tried Metformin & Avandia & it made me incredibly shaky. I felt like my blood sugar was constantly low while on both. My OBGYN said that I was allergic to them.

I’ve recently started having ok skin with only occasional breakouts. All I can say is that Clearasil zit cream should be your new best friend, LOL.

Kelly

Hi, all,

I had a hysterectomy in 1982 – after severe abdominal pain. It wasn’t until surgery that my gyn found that I had major endometriosis – I had so much he thought I had cancer.

I had no idea that endometriosis is an auto-immune disease…now have cidp, too. And, both my daughters have endometriosis, too. Learn something new every day 🙂

Taking it one day at a time………..;)

Cathy

Lisa,
Thank you for bringing this topic up. It just has become an issue for me too and I have been thinking of contacting my obgyn to discuss the correlation between the CIDP and my incredibly painful mentral cycle. In addition, I have been wondering about the entire hormone connection as I have noticed changes in my strength before and after my period. Which leads me to the question of testosterone/progestrone/estrogen levels affecting strength. It is so frustrating to have only inklings and theories and no medical proof or way of getting the attention of researchers for this. Who do we go to with this and what questions do we ask? I guess we are the new frontier in this disease. Let us know if you find anything out. I am very interested.
Thanks.
Linda

I had mild GBS years ago, still dealing with residuals.

Last year I had the whole endometriosis/growth on my ovary (they couldn’t identify the growth).

The doctor doesn’t argue with me as much when I say I have pain, cause they always find something wrong.

Interesting topic. I am meeting with my PC doctor to discuss the pain I have with my period. It has started to take my breath away, and leaves me doubled over at time. I was wondering about the pill and IVIG. Good to know that it is not a good option.
Thanks for the update:)
Rhonda