[Amilia737]

Has anyone had success from a laporoscopy? (spelling?) Have had Lupus for three years and was diagnosed with endo two years ago after a diagnostic Lap.

I had a miscarriage (first pregnancy) this past December and my stomach has been huge and painful since. They do not feel this is Lupus related but naturally all Lupus symptoms feel full blown right now.

Just wondered how many of you have both Lupus and Endometriosis and if a scope helped you feel better? I am having surgery next friday and just wondered if any of you have gone through something similar?

Let me know your thoughts!

Amy with the big belly

 

[raggedyann1]

Amilia,

I had Endometriosis and ended up with a hysterectomy where they took everything including my ovaries. I was 43 or 44 at the time so any chance of ever getting pregnant was gone. I do know that sometimes they use birth control pills to control endometriosis. Are they talking about going in to remove as much of it as possible?

A side note. Endometriosis is an autoimmune condition however I don't think it is any more prevalent with lupus patients than the normal population. It can be quite painful. When mine was finally diagnosed it explained the additional pain in my abdomen that I had been dealing with. I have Scleroderma with my Lupus and GI problems are normal with Sclero so it hadn't occured to anyone that I could also have endometriosis.

Take care,
Karen

 

[flutterbye]

Hi Amilia,

I am sorry for your loss, things must be very difficult for you right now,

I can't answer the question, but have just be diagnosed with endometriosis following laproscopy, and have had lupus for more than ten years.

I think that the helpfulness of laproscopy for treatment depends on just what is going on, I was told when I went in for surgery that if there were patches of it that could be scrapped or cauterised away they would do that, and that that can help a great deal in some endo cases.

I hope that you have a good team of docs taking care of you, and that they will get to the bottom of the problems and find some way of helping you.

Very best wishes for your surgery, and for the future.

(((((Gentle hugs))))))

 

[Maia]

I had a diagnostic/treatment lap for endo done years ago, and they lasered some patches that they saw. It helped very little. I was also found to have about the most extreme case of a retroflexed uterus they had ever seen (not due to endometriosis or adhesions - I was just born that way). The doctors did not believe this was a likely reason for my extreme pain though.

However, I did some research, and decided to have a second lap surgery to reposition my uterus so it wasn't folded over backwards on top of itself & laser any more endo spots they saw. That surgery had a longer recovery but helped IMMENSELY.

I was put on Lupron following my 1st lasered lap surgery, then went on Depo Provera. Both of these helped my symptoms & mostly eliminated my periods altogether, but had pretty severe side effects & in retrospect I wish I hadn't gone on them at all. I wish I had just gone on to have the second surgery immediately and avoided the hormonal assault I went through. Lupron in particular is associated with a lupus like illness, but they aren't sure if it truly causes lupus.

Good luck to you, I've heard of better reports from other people following surgery to treat endo. Just realize, that surgery is only part of the treatment and there are usually hormonal treatments afterwards that must be utilized long term...

 

[classicgirl29]

wow this post reallly hits home for me. i am 34, was dxed endo at 19. i have had 5 laparoscopies over the years and been on a host of various medications for it. the last lap they did they found my rt. ovary cemented to my back behind my left ovary from endo & scar tissue. there were similar issues with the previous 4 laps as well.

i'm not sure what you mean by "success" from laps, but if you mean curing the endo, they surely won't do it. they can clean you out with laser during laparoscopy but they can't stop the disease process. if you're lucky it may not grow back, but if you're like me, then you ahve a lap done roughly every 2 or 3 years to clean you out again and again.

various meds i've been on for this...let's see... the pill (continuously to stop periods), depo, ... basically every kind of hormonal contraceptive there is--which exacerbated my lupus so i went off them all in the end anyway. umm, there was a medication called Zoladex that is used to treat prostate cancer that i used for a while. it was a long time ago but i think i remember it worked pretty well, but it could only be used for 6 months so i had to stop it.

i haven't heard much from the endo in the last 4 or 5 years. maybe it's me reaching 30. but honestly i think that in the end what has "cured" my symptoms from this horrible condition was acupuncture! i went to acupuncture specificallly for endo once a week for nearly a year and then it was *gone* (knock on wood).

everyone's different tho... just be careful & don't let them fill you full of chemicals like i did. i really regret that now.

and, also, i have a really close friend with a similar case of endo. she had a procedure done where they cut the nerves to your uterus (?) and such down there to try to just stop the pain after they've tried everything else, trying to keep from having a hysterectomy. it didn't work, just so you know. she ended up having the hysterectomy at 29.

i am not trying to be a pessimist here, just to relay my story which has spanned many years, and was really a negative story til i went and got needled!

i am a HUGE supporter of acupuncture for all ailments now....

carol

 

[claire22]

yeh

Hi ,
I have had endometriosis since I was 13 and have had in total 9 laparoscopies they do help but only for about 6-12 months for me then it comes back but everyone is different !
I don't mind because the 6-12 months after op I am completely pain free , I am having an operation next week to have the new mirena coil fitted which stops endometriosis completely and stops my periods ,
so fingers crossed this will be more permanant
Good luck let us know how it went
Claire x