endometriosis

I am 35yrs old and was diagnosed last year with severe endome. They did the laprosco. surgery and I went on 3mos of lupron. and my pain is still their , can hardly sit sometimes and havent been able to be intimate with my husband of 16yrs for 2yrs because the pain is so severe. Am only pain free about 1 week a mo. Have had 3 opinions and 2 say hysterectomy complete and the other doctor says I should try another treatment of lupron- which made me so sick I could barely walk. So I am planning on having the surgery in feb.2003 I am very frightened of surgery could anyone offer me support or have any similar problems as me. I am also concerned that Im 35 and will go through surgical menopause, because if i take hrt It can cause endo to grow again. Also adding to my fear I have an older sister that had hysterectomy and almost died from bloodclot to lung. and then other sister hemorraged during c sec and almost died. Please help me!!

hi beth

i as well had sever endo, had to laproscopies within the last five years, i never stopped bleeding, bled continuously for 4 months, i am 34 years old, and i just had an LAVH in october, best thing i have ever done, i feel so wonderful, i can sit down without pain, and my legs do not cramp anymore, and my bowels now work properly, my endo had wrapped itself around my bowels, and boy did i have a lot of trouble.
as far as the blood clot, they now put things on your legs to keep the blood flowing, and the more you can get up and walk around the better off you are, i had surgery at 7:30 in the morning, and i was walking at 3:00.
my doctor advised that i have the hysterectomy, because i had been in so much pain for so long, i decided to let them take everything, because he said that if i kept my ovaries, that the endo could attack them, and i said nooo way, i was ready to be through with that.
so if you do decide to go through with the surgery, i wish you all the luck, and i hope that you come out pain free like i did, i will be praying for you

Beth - I'm so sorry you are dealing with this. I am also 35 w/ severe endo, and have had several cycles of Lupron over the yrs, as well as a laproscopic procedure. Unlike you, I did very well on the Lupron, but am unable to take anymore (too many cycles). Since I have stopped treating the endo, I have had increasing problems and must now have the TAH/BSO. I have wrestled with this decision for the last year, and now have problems that necessitated moving forward with the surgery. Had these problems not occurred, I probably would still be just dealing with symptoms and waiting. My Dr. has been stressing that a hyst may provide me with a better quality of life, and I sure hope that proves to be true. I am worried also about life without ovaries, and I hope someone out there can provide some info. I will probably post on the hormone thread. Good luck, and feel free to email me if you want an "endo buddy!" Holly

Hi Beth ... First of all - a big for you ... you deserve it !!

I too am 35 yrs old and scheduled for hyst 1/10/03 due to endometriosis, excessive periods lasting 10-12 days with heavy bleeding & clotting; etc etc etc ....

In fact, I could have written your post, as many others here could have also. I too suffer with bowel, urinary and stomach problems from my endo. Did 6 months on Lupron, which unfortunately did not help my pain. I too have not been intimate with hubby in a long time - too much pain.

Thankfully, I have a wonderful, supportive hubby who has stood by me through this long journey, and long it has been long !! And geez, like you, we've been together 16 years ... Are you sure you aren't me ??? Just kidding !!

Take a deep breath, read all you can on this awesome site, and feel free to e-mail me anytime ....

You have definately come to the right place for support and the information which will hopefully help you make the right decision for you !!

Good luck !!

I had my TAH in Oct 2002 and had everything removed. I have never regretted my decision and feel wonderful! No more pain, no more worrying and having to plan my life around my periods ever. I do take a hormone pill every day and have not experienced any side affects. I can't tell any difference in myself at all other than I just plain feel better!

Every woman is different and I just thank God that I found this website and could learn from others who have had to go down this road. I don't feel like any less of a woman because I had this done. I feel better about myself because I don't have to worry about it anymore.

Best of luck to you!
Jen

Beth:

Sorry, fogot to answer the part about Hormones ...

Every Doctor is different, so I can only offer what mine has in store for me. Which is to go on HRT only after some time .. he wants any "left behind" endo implants to die off on their own. My Dr assures me (and no, I don't necessarily believe him ... he is a man after all and has absoultely NO CLUE what hot flashes/night sweats/dry vagina, etc feel like) that the surgical menopause is not much different from the menopause symptoms I suffered with the Lupron (and am still suffering) ... Should have seen my hubby when I was up at 3:00 am opening my bedroom window in the middle of a snow storm ... lol !!

Discuss these concerns with your Dr and go over what options are available to you .. there are tons.

Hi Beth,

I am 38 and am having TAH BSO for severe endo on Jan. 21. I have had the disease in varying degrees for about 22 years - for the most part, it was undiagnosed and untreated. Over the past 10 years I had menstrual changes with a 21 day cycle and 14 to 17 days of bleeding. The pain and swelling was excruciating. Just over a year ago, it got so bad I was passing out. I found a new dr who said "endo" and referred me on to the greatest specialist who said "endo". I had a laparoscopy, hysteroscopy and D&C in Feb. 2002. He removed some huge adhesions from my bowel and bladder. He couldn't do anything else as I was too full of endo all over, and it would take "weeks of surgery".

I was started on Zoladex and was launched into immediate menopause. The hot flashes were great in comparison to the pain and the periods, which were now gone. Because of bone density issues, I came off the Zoladex after 6 months and my endo was worse than it had ever been. I have now been back on the Zoladex for 2 months and it is not doing anything of benefit for me. We (me and my dr) agreed that the hyster is the only thing left to do.

I am soooooo exicted about having this surgery! Eventhough all must go (like a going out of business sale) I will be free from the pain, swelling, bleeding, etc. that has been there forever. I don't know what it will be like to plan things and actually be able to do them, but I can't wait!!!

Endo has affected my life, my DH's life, and the lives of my friends and family - so many women with endo have NO quality of life because of this horrid disease.

Like you, I was really scared about having this surgery, but there are some great books out there dealing with endo and hysterectomy and this site is an absolute God-send (we are so fortunate to have this forum!)! I researched a lot, talked to women who have gone through it, and am now really at peace with this decision to have the hyster.

I am not planning to try HRT for the first year after the surgery -- well enough said but we'll see how it goes... And, the hot flashes in winter really do keep you warm!

Good luck &

I am 7 months post from a TAH/BSO. I feel terrific. I forgot what it feels like to do everyday things without being in pain!
I am so glad I had this surgery. My DR wanted to wait 6 months for HRT and gave me a depo injection. I was supposed to get more depo at three months post and chose not to. Nasty stuff!

At 3 months post I tried the lowest dose of HRT possible. Within 2 weeks my endo pain came roaring back. I do not do HRT at all and feel really good. In fact I feel so good that my Mom <who had a hyst 17 years ago and been on HRT since> came off of her HRT and said she finally feels like herself. As though a veil has been lifted.

I take supplements:

Calcium
B-6
evening prirose oil
vit e
a good multi
coQ10

I also use vaginal estrace cream for dryness and progesterone cream to keep the endo away. Endo makes it's own estrogen as does belly fat.

"Endo makes it's own estrogen as does belly fat. "

Could you please explain this - I have never heard of this before . . .

Thanks!

I found your post very interesting as it is very similar to my situation. I have been worried about how difficult the hyst will be because of all the endo . Is it easier for the Dr to remove uterus, tubes, ovaries, etc... than it is to try and "clean up" the endo? Is it possible for endo to be so bad they can't go through with the hyst?