CIDP and Endometriosis
AnonymousOctober 30, 2007 at 4:34 am
I was having increasing difficulty walking – which isn’t unusual for me but I began to notice increased left hip pain and also increased lower left abdomen pain. After my last visit to the Mayo clinic – when they found several Uterus cysts which needed followup – I ended up in surgery for endometroisis.
Sometimes I think it is hard to sort out when my cidp causes additional symptoms or conditions and when other conditions inflame the cidp.
I have read several postings over the years about women who experience increased cidp symptoms during certain times of their monthly cycle.
That has led me to be more curious about the relationship between cidp and my endometroisis.
Anyone else had similar problems (ladies?) or anyone who has read about the correlation between different inflammatory diseases or hormone related syndroms? I am still in the exploratory phase of what to do about treatment for my endo – just what I needed more pain!!
I always find great answers on this board – thanks for any support!
AnonymousOctober 30, 2007 at 7:44 am
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.
AnonymousOctober 30, 2007 at 10:08 am
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.
AnonymousNovember 1, 2007 at 1:25 am
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.
AnonymousNovember 1, 2007 at 12:37 pm
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.
AnonymousNovember 4, 2007 at 2:56 pm
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.
AnonymousNovember 5, 2007 at 1:06 pm
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.
AnonymousNovember 6, 2007 at 10:41 am
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………..;)
AnonymousNovember 24, 2007 at 10:52 pm
And then a comedy of screws by the OB/GYN – over 2 weeks transpired with no results – finally went in and got stood up again! I demanded to have a copy of my records and a personal call.
Turns out the biopsy was negative for endometriosis – but showed chronic inflammation – Dr. wanted to go straight to hormone therapy. I am waiting for a second opinion.
I go to Mayo for my bi-annual checkup next week.
I am intrigued about the possible correlation between chronic pelvic inflammation and cidp – does one cause the other – inflame the other, etc.
And the saga continues!
AnonymousNovember 25, 2007 at 1:43 am
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.
AnonymousDecember 4, 2007 at 1:02 am
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:)
You must be logged in to reply to this topic.