Anyone had second surgery for Endometriosis?

Well, it's been 6 1/2 months since my sub-total hysterectomy for endometriosis, cysts (simple and endometriomas), and fibroids. After 3 months, I started to have constant pain on my right side of my back which I thougt was my siatica (sp?) nerve. Nope, it was the endo coming back.

Has anyone had a second surgery after their hysterectomy for recurring endometriosis or cysts?

I have my left ovary and cervix. Have been taking Megace (progesterone) for about 3 months now. Doc says he can feel three growths (two are staying the same size and one is shrinking slightly).

To say the least this is a bit depressing. I'm wondering if they should have taken the healthy ovary too.

Oh well, any advice would be appreciated.

I'm a endo suffer I had a TAH dec. 2000 and I just had yet another surgery a laperotomy along the same incision to have both ovaries removed and adhesions cleaned up and before that i had 2 laps to clean it up! I guess what i'm trying to say that being an endo suffer its always best to have it taken out all at once! The reason for having my ovaries removed is because i had an endometrioma cyst! I never had cyst until after my hyster,...but i've suffered for 10 yrs with endo on and off! So yes i'v had 3 surgeries in 1 yr and 4 months! As long as you produce estrogen you feed the endo! I'v done alot of reading on endo!
I wish i knew then , what i know now, because i would of had the ovaries out with the uterus and cervix! Right now i have no ovaries uterus or cervix and i'm glad i'm on very low estrogen 2mg other than occasional hotflash i'm fine i think, although i'v been having alot of cramping my doc. called it phantom cramping and he told me for now its normal as long as the pain does'nt hit the ceiling, during my surgery on april 24th at that time no endo was seen lots of adhesions and a good size endometrioma cyst!
So its not uncommon for us endo suffers! I hope this helped!!
Sending you some 's!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Love Colette

Wendymoo,

I'm so sorry you are experiencing pain. I too have had problems with Endo post hyst (and I had everything removed).

For me, my pain started rather quickly after the hyst. I was looked at like I was completely nuts. It took me 7 months to find a dr who would believe in my pain (I didn't even take any form of hrt for 3 months post hyst). This new doc did a lap and was shocked at the amount of Endo she found deep inside my pelvis. Sadly she had to leave some behind - due to its location...and I just know that there is more in there now, as the pain is gradually becoming worse. Like many other sisters here, my doc is hesitant to do more surgery. She noted minor relief from the last lap, and she feels that the risk outweigh the benefits....especially with adhesions. So it's time for me to go dr shopping again....

I just thought you needed to know that it can happen even in women who no longer have their ovaries. Please do let us know how you are doing...we're here for you...'S

I had the endo come back but I already had the ovaries removed so I'm quit taking the HRT and I feel lots better.

Wendy

I am so sorry to hear that news. I have recurrent ovarian syndrome and suffer from Endometriosis. I just had my third surgery within 10 months on 4/23/02. So, yes to that question.
My symptoms came back about 2 1/2 months after my Hysterectomy/BSO. I have NEVER felt pain like that before and I was told it was my kidneys in the ER, so watch what kind of doc you see about it, if it comes to going there for pain relief.

I am not on HRT and I do not have any symptoms of menopause.
I am praying that this is the end, but without menopause symptoms; I have to wonder if Estrogen isn't being produced somewhere within. I will hear more on that tomorrow when I go back to the doctor.

I hope this just a pulled muscle or something else for your sake.
Take care and let us know how you are doing.

My heart goes out to you,

I had a hysterectomy in June 1996 for adenomyosis, endometriosis, and fibroids. In Dec. 2001 I had on-going vaginal bleeding. Endometriosis had returned on the vaginal cuff. I had it removed via same-day surgery. It is a crazy disease!!
Gail

Wendy....

's to you!! I'm sorry you are having to go through all of this, it seems like you've had enough.

I had my LAVH on 12/3/01 and I remember reading your "story" before my surgery and I want you to know how much it helped me prepare for it. Your words really eased my mind because at least I knew what to expect. Thank you.

Interestingly enough, I too have been having some problems in the past several weeks. Bladder issues lower back pain and pelvic pain. GYN found I had a low grade bladder infection that I didn't even know about! A course of anti-biotics and bladder spasm meds and she did schedule me for bladder function tests in August. I'm on Estratest now (was Estraderm patches) and over the past week I've been amazed at the ladies who are suffering from recurring endo.

Like you, I had several different cysts, endo, fibroids, etc. and so on. I'm not convinced the problems I'm having now aren't endo related, but it never came up at my recent appt with the GYN. I went in for bladder issues...like urgency, etc.

Can endo really come back when you are on HRT...really???

Now I'm wondering....is my endo back???? I think I'll at least give her nurse a call and let her know the bladder med doesn't seem to be helping.

I really hope you get some relief from your pain.
Keep in touch.



Lori

Here is a good thread with lots of info about recurring Endo post hyst:
http://www.hystersisters.com/vb2/sho...threadid=28124

Another good one:
http://www.hystersisters.com/vb2/sho...threadid=47930

Great links:
http://www.hystersisters.com/forums/...?threadid=8782

Hope this helps....

Sheri

Thank you for the links...this is very interesting as it did not even occur to me that my endo could be coming back.

Thanks again,

's!!!



Lori

From what I understand if you've got estrogen you have the chance of getting Endometriosis. The estrogen feeds the disease.
Whether it's nature or supplemented, it doesn't matter.
I don't think I'm ready to go into full fledged menopause at 40. The pain is not severe--not like before the surgery. However, it is more constant and nagging. Also it's a constant reminder that it's still there.


I'm glad my story helped you. The unexpected is always more frightening then reality. I know so many stories here have helped me (pre- and post-op).