I am losing my mind! Anyone have Endometriosis?

[DechenDolkar]

I feel like I am losing my mind and I just really need some support from people who understand what chronic daily pain and anxiety feels like. I suffer daily with this Chiari head and I am fearfully contemplating surgery as my neurosurgeon feels it would be helpful. To add more crap to the already spoiled stew I have been having right sided pelvic pain for over a year which is progressively getting worse. Ovulation and menstruation is unbearable but it hurts all the time. My doctor feels that I have endometriosis and gave me the options of surgery, depoprovera injections, or progesterone pills. She wants me to discuss these options with my neurologist and neurosurgeon as I am her only patient who has a Chiari Malformation. I am not happy with any of these options. I already feel so unstable and I fear those medications would push me over the edge mentally and surgery seems useless because if it is there and removed it can come back. I don't mean to put so much negativity out there, I just hurt and feel filled with frustration. I am seeing my GI next week to just rule out any problems in that regard but at this point endometriosis makes the most sense.

Do any of you have endometriosis and how are you dealing with it. What have you tried and what were your experiences? I would really appreciate hearing from you! Thank you so much!

[Viva001]

Do they not do D&Cs anymore.

In reading this thread, it makes me wonder how many of us were affected by menstruation, conception, delivery, menopause, etc.
Btw, I think my right ovary is *still* trying to send out an egg every month.  Again, I'm 61, & only 1.5 yr into menopause.  How frightening is that?!  lol

Granted, a lot of women have these issues, but I dont recall my NS asking me about any of this, although he does ask about sexual function.  IMO, I find these other issues more important than libido.

[DechenDolkar]

Thank you for sharing your story, actressmouse. I am sorry you had to go through that. Can I ask you how you handled the progesterone therapy as far as side effects?

Oh my, the back labor! I had that too. Talk about pain. I was in labor with my son for 28 hours and 6 of that was pushing. (No wonder I have a chiari malformation :) He had trouble turning and I think it had to do with my titled pelvis. I can't believe they let me go that long. However, I didn't want a c-section so I just pushed and pushed and they were finally able to use a vacuum. I felt like I had to mentally leave my body to avoid dieing from the pain. I didn't have any pain medication or epidural. I also had to have petocin, which made for a never ending contraction. I still can't believe what we amazing women are capable of! I would go through that a million times over for my little guy :)

[actressmouse]

I don't have endo, but I did have endometrial hyperplasia....that's where the lining of the uterus isn't shed, but is added to every month.  It's considered a "pre-cancerous" condition that is usually treated by 3 months of progesterone therapy (which you are on for the first 10 days of the month).  This hormone prompts a period.  After 3 months, another biopsy is done to see if all the lining has been shed successfully.  I knew I needed something done because I was having erratic periods....nothing for 2 months, then 2 periods 2 weeks apart the next.   I went through the whole treatment last year prior to surgery and I was cleared in April.  My only other option was a complete hysterectomy.  Oh, and I have a "tipped" uterus -- it's flipped toward my back.  I've had it manually put "in" the right place, but it always goes back.  Had terrific back labor with both my kids, too.  Ugh.

[DechenDolkar]

Yes, my MS was confirmed by lesions found on MRI and spinal tap findings.

I am curious about the tilted pelvis as well.

I will keep you posted!

Thank you all for your comments!

[selmaS]

Thanks...it took me a little over 5 yrs to conceive....no explanations.....

Not sure if I remembered u saying u had MS....was that a confirmed DX?
Goodness I know we have had a few members with both and some that were misdx'd with MS to find later it was Chiari not MS.....

  The tilted pelvis is an interesting puzzle piece....wonder how many others have had this too?

[Viva001]

I'm heartened that people are getting Dxd early.  (16 yr for me).  Sometimes it is up to us to put the pieces together though.

Sometimes I feel like this is all some kind of sick joke; how could this condition wreak so much havoc?

I'm glad that you were able to have your DS.  Take good care of yourself so that you can take good care of him.
& keep us posted.

[DechenDolkar]

Viva - Thank you for your reply. I am sorry to hear that you are having such an awful time with menopause. That is definitely something I fear. I hope you feel better!

Selma - That is heartbreaking, you have been through so much. I have one child as well, an amazing son! It took a long time to get pregnant and I did want to have another child but I had a devastating MS attack and was warned not to continue trying. After several years went by and I didn't have another attack I wanted to try again and my headaches became severe and I found out I had Chiari and again the doctors warned against trying to get pregnant and at that point I was fearful as well.  At least I did it right the first time and I have such a wonderful boy who keeps my life worth living.

I also have a tilted pelvis. So much to piece together!

[selmaS]

  Yes, they did, but it did leave me with only one child...I am not complaining, I feel blessed to have her, but if they had listened I may have been able to have another one....who knows....

I also did not appreciate the pamphlets on menopause as they said just bcuz u have menopause it does not mean u should retire to a rocking chair...I was in my late 30's.....and very frustrated.

I forgot to mention I also have a tilted pelvis...not sure if that plays a role in ne of this...but it is an EDS thing too I believe....

Yes, chiari can affect hormones in that it can affect all aspects of our very being...and our pituitary gland can get compressed....especially when there is so much inflammation and even excess CSF can add to it.

  Let us know what u find out

[Viva001]

I'm sorry for what you are enduring.  I was never Dxd w/endometriosis--they didn't use to check for that--but I always had severely painful menstrual cramps (to the point of vomiting).  To add insult to injury, I also have menopause from hell.

I have to believe that Chiari is implicated in both; it can affect everything, including hormones.

If you're committed to Chiari surgery, you *may* find that your hormonal state improves.  I hope so.

[DechenDolkar]

Thank you, Selma. I will discuss EDS with my doctor.

I am sorry you had to deal with all of that. I really think if these doctors spent a little more time listening to their patients they would be much more educated and qualified to treat us.

Did your endometriosis symptoms go away after menopause?

[selmaS]

  Hi....I truly felt I had this, and I have a cousin and 2 sisters that were dx'd and treated for it...in researching my current dx of EDS I found endometriosis is related to EDS...

I was completely brushed off my drs and told I was pre menopausal....and there was no need to look further...well I was done with menopause b4 I was 40....so I was not happy as I started going to Drs in my early 30's wanting another child....I am not sure, but I also feel my dx of Hashimoto's also played a role in this as well....

Push for answers....as it is not right and I do not want to see neone else go thru what I did....

  Find out if u have EDS and see about the endometriosis....

Keep us posted : )  ((hugs))

[DechenDolkar]

Thank you, Linda! I really appreciate your reply.

I hope tomorrow will be better. Although, my hopes really just seem like useless wishes.

[linnielou232]

I don't have this issue, but just read your post and my heart goes out to you.  I know dealing with Chari alone is enough and now you have this to deal with.  Just wanted to let you know I'm thinking and hoping the best for you.  Wishing you a more pain free day.  Which I know is a difficult thing to ask for.
Linda ;)