New here I hope this is the right place...

Hey everyone..

I hope that I am not wasting your time with my questions, Im not sure that I am posting to the right area though. I was directed here by someone on the MGh endo board and she said that there were a lot of women here with endo.

I have stage 4 endo..I had a laporascopy in 2000 because they found a "mass" and they needed to know if the cysts were from the endo. My left side was much worse than my right side..the doc could clean up the right but had to leave some on the left. I also had it everywhere including my bowels and behind my uterus.

I had my miracle baby just this past May by C-section ( my only c-section my other three girls were born naturally with very short labors...the doc who did the surgery wanted to tie my tubes but told me that she couldnt even FIND my left ovary because of the endo and the adhesions.

My trouble is for a very long time I have had left sided tingling......I have had every test concievable for it...MRIs MRAs autoimmune tests..etc...everything comes back normal.. I do suffer from migraines. After my lap the numbness subsided for sometime...now that I have had the baby its back...

I have about 10 good days... at around the tenth day.. I start with the headaches and numbness in the left foot and leg and in the left hand. From there on its all downhill until I get my period..I dont have alot of pain with my period.. I used to as a teenager..but not since I had my kids...I have lower back pain, and pain in the front of the thigh..

I also have sever prementrual syndrome..but now it seems to last almost ALL month..with only a few good days.

My doc want to do a hysterectomy...I cant do any HRT at all because of the migraine history and I also have a very strong history of heart disease ( my father died at 34 of a heart attack) so I would have to do the surgical menopause with no estrogen replacement.

I dont know what to do..does anyone else here have any tingling or numbness from their endo???

I also would appreciate hearing from anyone who has had a hysterectomy but can not take any hormones..how was it??

Any help anyone can give me would be so appreciated...I am grasping at straws now..

Thanks
Tracey

Hi Tracey Welcome to HysterSisters! You are in the right place... there are lots of sisters here who have had endo. Hopefully someone will come along here who has had similar symptoms.

There is also another forum on this site called the

No-Hormone Desert Oasis

That's where the sisters who can't take HRT hang out and help each other with non-hormone alternatives to handle their menopausal symptoms.

And, since you haven't yet decided to have the hyst, there's another forum which you might find especially helpful since they talk about both hysterectomy and also the non-hyst alternatives. It's called

Hysterectomy Options and Alternatives

I think you'll get plenty of good responses and support here. We're glad you found us!
s,
-Linda

Hi Tracey

Late last year I had a TAH/BSO, primarily due to severe stage 4 endo. I also had a history of fibroids and the pathology report showed adenomyosis too. I'm 47, so probably quite a bit older than you.

I did not have the tingling and numbness that you describe. (Reading your post made me wonder about some sort of nerve involvement ??) But I sure had back pain, heavy bleeding and clots, and many years of intestinal problems. My right ovary was stuck to the right ureter and the mass was stuck to the peritoneum. I had a urologist there during my hyst to put stents in my ureters so that my gyn could dissect the ovary away from the ureter ... My gyn was also assisted by a gyn oncologist who actually trained him. The gyn oncologist did the endo removal part of my surgery ... he did peritoneal stripping and excision of deep lesions on the right side and in the cul de sac area and around my sigmoid colon.

I didn't take any estrogen for 12 weeks post op. During this time I took Megace (a progestin) to further suppress any possible endo remnants. I took a soy supplement to help with night sweats, along with a new regimen of a multi-vitamin and calcium supplements. My doc prescribed Celexa (mild anti-depressant) at 6 weeks post op because I was feeling pretty low and needed a little help until I could start taking estrogen. I started low dose estrogen (0.3 mg) at 12 weeks post op, then graduated to Estratest (0.625 mg estrogen, small amount of testosterone) at 5 months post op.

How did it feel to be in instant surgical menopause with no estrogen? For me, it was not that bad and I had adjusted really well after a couple of months. The worst symptoms I had were night sweats, but that calmed down when I started the soy supplement. Since the night sweats would wake me up, I also took Tylenol PM for awhile and that solved the sleeping problem.

To be honest, the menopausal symptoms were nothing compared to the pain I had been living with. Hot flashes, night sweats, feeling sad at times ... a small price to pay for being pain free. My age probably was a factor here as well ... closer to natural menopause than you might be.

I know this is a lot of info to digest ... feel free to send me a PM if you have more specific questions. Best of luck with this difficult decision!

Beth

Hi Tracey

First off, you're not wasting anyone's time. Our threads are read by many...and many don't have a suggestion to help, so they (me included) mentally wish the sister well and go on. There are however, so many here with endo stories that sound like yours!

I don't have endo but I have tingling and numbness in my foot with burning in my thigh. I believe it is a nerve being touched with just enough pressure to cause symptoms. In my case I think it is due to the enlarged uterus. It sounds like your left side has more old endo and maybe that is the problem. I haven't read about the upper body being affected.

Your hand could be a separate issue in itself. I wear wrist braces at night because the tingling wakes me up and typing and cooking, etc is affected. The braces work really well. I know this symptom as carpal tunnel syndrome. And you don't have to work as a grocery clerk or on computers to get it. Maybe you have this.

Good grief Tracey, you are suffering so much. Sounds like you have no other options but to remove it all. I do believe you could find some alternative low, low, low dose of estrogen cream that would be ok to use. You may need nothing!! Do consider seeing a hormone therapist after your surgery. You may need to use an estrogen cream in the vagina. The specialists are current with the latest and they have time to dedicate to your needs. I believe returning to a gyn who still delivers babies is not in our best interest.

Best of luck and please let us know how you are getting along.
s
Maralyn