Help?! Post hyst endo pain and Lupron!

Hi Ladies,
I have been dealing with awful pain for years now. Had a lap. done July 06 and was diagnosed with having adenomyosis,endo.,pelvic congestion,abnormal cells,bleeding,blah blah blah. I had to have a hyst. 1-18-07. Took my uterus and cervix. Dr. left my ovaries b/c I'm 33 and he thought I was young to have them removed. My lt. ovary had endo on it that he cut out. Well 3 months post op and my endo is back!! I'm having horrible lt. sided pain and pelvic pain and the wonderful lower back pain. My dr. gave me a script for lupron 3.75 one injection for 6 months. And my insurance company won't pay. I would have to pay over 600.00 for each shot. Yeah, No if the lupron doesn't work I may need a bso.? So, do any of you have advice? Have any of you been on lupron did it help? and one more question How long does it help with the endo?
Thank's Lisa

From what my GYN told me when we discussed me using Lurpon a couple years ago, if the Lupron worked, then we would have a pretty good idea, without surgery, that endo was the culprit. If the Lurpon did not work, then we would explore other diagnoses and options.

I have heard that if your insurance company does not cover Lupron, your doctor may be able to contact the maker of Lupron directly for either discounted or free shots.

Lupron works differently for each woman and can last for various amounts of time. Since you are recently post op, if endo is the problem, it could be that there is not a lot of it and the Lurpon may be enough to finish it off, so to speak.

Is your doctor an endometriosis specialist? If not, you may want to consult with one if at all possible.

in there!

Hi Lisa

I'm sorry you are hurting. Just like pre-hyst, endometriosis has to be seen for a positive diagnosis, but as (((Weiser))) mentioned, sometimes the Lupron can really help give you a pretty good idea if that's what you are dealing with.

I don't have my ovaries but I did have recurrent endometriosis & adhesions removed last year. Although my right side feels much better, my left side still hurts just like it has my whole life. My point is... even with additional surgery it's really difficult to tell what the pain is from sometimes. Endometriosis, adhesions, scarring, nerve damage, etc.

I'm sorry you are suffering and I hope you get things figured out and are able to get some relief. I did Lupron the year before my LAVH/BSO and it really helped my pain. Some women are reluctant to try it because of the list of potential side effects, but for me they were worth the trade-off. I hope something works out for you regarding the cost. My GYN's office said they normally get approval because, although it's very expensive - it's cheaper than surgery.

I hope things improve for you soon.
Best wishes & gentle s,
Beth

Thanks ladies I spoke with the nurse at my dr.'s office today and she said she would have my dr. call me today. I hope to get some news today to help me out with the pain. Will post again when I have more info.

I have been dealing with stage 4 endo for 15 years. After multiple laps, and more drugs than I could count, I had a total abdominal hyst 3 weeks ago.
I was put on Lupron last year after lap #3. The side effects were horrific, and my endo grew back within 3 months. In my opinion, it wasn't worth the injection. I was dealing with side effects for a year after the injection. I never took the additional injection. Why take the meds, if they don't stop the endo?
I wish you the best of luck...

Kristin, Thank's for your input. I spoke with my dr. yesterday and I told him that I just wanted to have a bso and get it over with. But he said he wanted me to go on dananzol and I didnt like the side effects I read about. I've been through to much pain, 3 months ago I have a hysterectomy and I told him if my ovaries have endo. on them take them out. If they look good and healthy leave them. Well he left them and just cut out the endo. that has grown back so soon!!!! I am having a second opinion next week hopefully I can get some relief soon?
Any suggestions?
Lisa

I think a second opinion is a good idea. And one thing to consider, if you do have a BSO, what will you do for your hormone needs? Estrogen is benefitial for our cardiovascular health, strong bones, skin, eyes, etc. Taking HRT if you have endo can also be a problem as any estrogen can feed any microscopic endo that is left behind. Some doctors will not write scripts for HRT for their endo patients. Others will give low doses. And you would want to ask about using progesterone along with the estrogen in order to hopefully allow the estrogen to do its job, while the progesterone keeps the estrogen from feeding the endo, hopefully.

You will also want to ask how long after a BSO will you have to wait to use HRT. Some doctors say wait 1 month, some 3 months, some 6 months, some 1 year. So you will want to know how you will need to deal with surgical menopause, which can be horrendous from some, not so bad for others, if you are not allowed HRT for a space of time or not allowed to take it at all.

I wish I had a miracle answer and a cure, but I don't. And I wish I could tell you that if you had a BSO then you would be assured of never having endo issues again. But I can't promise that either.

Talk to your doctors, ask all the questions you can think of and compare their answers. Research as many Endometriosis Resources as you can and again, if at all possible, see an endometriosis specialist. It may be worth traveling to see one.

I wish you the very best for whatever you decide is right for you. We all have to consider our circumstances and make the best decision for us! And we are all here to listen and encourage you the best we can!

And do keep in mind that while you read that there are terrible side effects from the various meds you are being offered, there are women who have no problems using them. But generally people don't take time to write about positive experiences with anything. Human nature is such that we only write a letter when we want to complain about something! And with Lupron, it is possible to use add back therapy to help with the side effects.

s

My gyn that just did my total hyst is an endo specialist...he actually quit delivering babies to help women that have other female issues, such as PCOS and endo. He is a terrific dr, and he is a speaker for the endo assoc...When even he said, "the best thing for you is a total hyst..." I listened. I had researched endo for so many years myself, that I knew the dr was right.
I tried Danazol and Lupron and with no avail the endo grew back super fast. The side effects with both were awful.
Everytime I had a lap I had to have my bowels and bladder "worked on" as well because of the damage that the endo had caused to those organs. My endo never "dried up" regardless of what pharmacuitical (sp?) concotion I tried.
After I had my hyst, my doctor has put me on 3 month doses of depo-provera injections to dry up any endo they couldn't reach due to the location. I am on HRT to help balance out the lack of ovaries.
Just knowing that in 20-30 days, I will not be in debilitating pain, brings me joy. I can start living at the age of 29...finally. I have no children due to the infertility the endo caused, but there is always adoption.
I had to choose to get my quality of life back.
I do wish you the very best of luck.

-Kristin-

I just had a TAH with everything removed so the endo would not come back. I had a great doctor who has done many endo cases and no one returns with pain because the ovaries are removed. If ovaries are not removed they do continue working each month. Also, I opted out of Lupron because it never helped a friend of mine who used them for the same reason and please $600.00 is absurd for any medicine. My insurance wouldn't pay either unless the medicine shots were in a doctors setting already. Insurance companies afraid you will give yourself the shots. HELLO..... not me. So now I am trying hard to recoop from the TAH its not been easy

I wasn't give the shots you were to get the rest of the endo.